The fight continues....

So Joseph had his appointment with the new psychiatrists in Cincinnati they agreed it was reasonable to start tapering Joseph off his medications. We started with depakote slowly working things down. A week and a half into it Joey started having "hallucinations". We followed the crisis plan we had in place and took him to the ER I worked at for evaluation. I am so thankful for the amazing people I work with who worked diligently to get him transferred to Cincinnati. That evening he was sent to the inpatient psychiatric unit. Joseph was there for 5 days and in 5 days the physicians did more than anyone had in 5 years. The psychiatrist who was overseeing Joeys care took Joey off all his psychiatric medications. It’s the greatest feeling ever to finally have someone listen. Joey is no better and no worse than he was on all the medications. Just goes to show that again the physicians should have listened years ago. It saddens me at the same time because I know as well that this truly is his baseline functioning. We have had to continue to fight for any kid of help for Joseph and honestly the blows just keep coming. We were turned down for DD services. I am so sick and tired of all of this. He doesn’t fit in some nice little box that every agency wants him to fit into in order to give him services. Joey doesn’t have a specific diagnosis and mind you after years of being diagnosed everything I certainly don’t want another label on him just for labels sake. The problem is without a label no one will help. It is exhausting! Whether he is mentally ill or brain damaged he needs help, we need help. I know the prognosis for Joseph is not good but that doesn’t mean that we don’t keep trying to get him services to help him function in society as much as possible. I don’t understand why it has to be so complicated. As if all that wasn’t enough Joseph had a major blow up several weeks ago. We were headed home after picking up Max. We were on the interstate when Joey asked me if he could get a tattoo. I asked if he meant a temporary tattoo or a real one. He said he wanted a real one. I told him that 12 year olds are not allowed to get real tattoos. That’s when it all started to go wrong. He started ripping things apart in the car and throwing things out the window; garage door opener, knobs to the radio, miscellaneous contents of my purse. I got on the phone with 911 and began pulling the car over. That’s when Joseph unleashed on me. He repeatedly struck me in the head with his fists. He grabbed at objects in the car and hit me with those, broke my glasses in half. At one point, one brief moment of clarity I believe Joey had in the middle of it all he became suicidal. Screaming at the top of his lungs “I want to die!” and trying to run out into the traffic of the interstate. It took 15 minutes for highway patrol to arrive, 15 minutes of an onslaught of an assault, 15 minutes of being completely terrified I was going to see my son die in front of me. When highway patrol got there it was a mess. The officers were very nice but how many times do you think a highway patrolman deals with domestic violence from a mentally ill kid? After much conversation the officers transported Joey to the detention center. Joseph had court the next day. It was terrible. First the court was trying to close out some of his old cases. When a kid admits to a charge in court they have to describe the details of the crime they are admitting to. Well most of these incidents were so old Joseph couldn’t even remember what happened. At the end of it all he said to the court with tears in his eyes, I want to go back to detention, I can’t control myself and I don’t want to hurt anyone. The court ordered him back to detention for the time being and a whole series of events got set into motion. Everyone was standing around trying to figure out what to do. Probation, children’s services, his advocate no one knew what they should do and everyone had a different interpretation of what was going on. I simply wondered that since everyone had a different idea why not all get together and in a room and have a conversation. It was agreed that we would all do so. Over the course of that weekend I worked. I will have a side bar at this time saying I appreciate everyone’s concern for our safety and I have concerns as well but I am entirely sick of judgment from people who think this should be a simple fix, just let Joey go. I had a conversation with someone at work that I respect and consider my friend. I know or at least hope this person had no malicious intent. The conversation basically focused on the fact that I sacrifice everything for Joseph and he will never get better and I need to let him go and focus on my other kids and husband. This person said, “You already don’t have one son living with you and that’s a choice you made, how do you think Christian feels that you picked his brother over him?” Well great, as if I don’t have enough doubt in my mind. I called my husband and was almost inconsolable that I am screwing everyone up. Paul (being the amazing person he is) said so if you gave up Joey for Christian you’d be a better parent? I look at it this way, my son Joseph is sick. He is 12 years old. He has no ability to advocate for himself. This is a child who has no control over his actions but has deep remorse for all that has happened. I will not give up on him. This is not an easy road; this is a road that is filled with heart ache and difficult discussions but this is our life. If people can’t understand or don’t want to support my choices than they can stay out of it. Anyway I will get off my soap box. The following Monday we had the BIG meeting, Probation officer and his boss, Child services caseworker and his boss, CASA and her boss and than me. In this round table discussion one thing became very clear, child services are not our friend and my caseworker’s boss has a real attitude problem. She communicated at the meeting that children’s services have already provided several services to our family and at this point feels they will not provided anything else. I simple looked at her and said “If you have done all you can do and have nothing else to offer than why are you still involved.” I don’t think that got me any brownie points. The probation department pretty much ran the meeting and took control over everything. They stated they would be doing whatever they can to provide services to us and Joey. It was decided that in order for everyone to get on the same page they all needed to hear what the doctors had to say at the same time. That Thursday we would all travel to Cincinnati to see the doctors. Thursday Joseph’s probation officer, CASA, caseworker, my husband, Joey and I all took a van to Cincinnati. What a ride that was. Joseph was going about 100 mph. I couldn’t tell if it was because he was out of detention or if he was manic. Joseph was describing this movie that they had watched in school at the detention center. Joey described everything in great detail. The very interesting thing is that no such movie was ever shown. Once in Cincinnati everyone sat at a table and had a discussion about Joseph. The doctors feel Joseph has IED (intermittent explosive disorder) and neurocognitive deficits of unknown extent. The physicians were very careful not to get ahead of themselves in diagnosis and labeling. After much conversation it was determined the best scenario would be for Joseph to be directly admitted to Cincinnati Children’s. There were no available beds on the unit at that time so we had to wait. We waited, one week for a bed to come available. In all the time we waited more prying and more hands in the cookie jar trying to say what is right for Joey. I am beyond frustrated, there are too many people involved and most either don’t know what to do or are not willing to do anything because they have already done all they can do. I don’t want to loose my son; I am worried for safety of everyone, including Joey. I don’t want him warehoused, shoved off someplace for the sake of having him someplace. I am truly concerned about Joseph becoming “institutionalized.” He seems at peace in the hospital. I think no matter how we try at home for it to be structured, it can’t be as structured as a hospital and I know Joey truly fears hurting one of us too. I am tired of everyone pushing for answers we might not have for years and years. I guess we shall see how it all plays out this time. I just don’t feel it should be as difficult as it is to get help without being judged or having to jump through a million hoops. I do feel judged, I feel judged every time someone new comes into the picture. I feel I have to show that we are truly a family who cares and loves their son. The whole situation makes my head spin honestly. I am not sure where this is going to lead but if anyone thinks they are going to shove my son away they have a fight cut out for them. Again I will certainly try to keep things better updated. I appreciate all the support from everyone.

Here we are....

It's been a long time and much has happened. After the previous entry and much dancing with the bureaucracy that is all the agencies involved in our lives we were able to extend Joesph's stay a short time at the facility. We moved into our new home and got settled as best we could to be able to have Joseph come home.
 Needless to say I nearly lost my sanity during the process. Joseph came home for good but the battle has not stopped. We settled him in, attending the ymca summer camp and having a routine at home. We continued to fight with child support enforcement to forgive our past child support since we were reassuming the costs associated with his care and just having him, this is still a battle we are fighting. Honestly by the time it is figured out we will have paid it all off anyway. But all that is some of the smallest in worries compared to everything else.
Child services had to go to court to return him home because him biological father wouldn't sign the agreed entry, it didn't make a difference but just caused the process to be dragged out longer than necessary. We couldn't find a respite worker to work with us because the services come from department of developmental disabilities and even though Joey is low functioning with an IQ of 75 he is too high functioning for services. We again were denied for social security because we exceed the income criteria but certainly aren't making enough to always be able to afford everything he needs. Is anyone seeing a pattern here? Its the never ending grey area our family lives in. So we continue to fight for services as much as we can.

Now since Joey came home I continued to hope we were transitioning ok. I knew we would have some bumps but I was not prepared for all that was going to happen.

Meetings, appointments on and on trying to have everything in place for Joseph. On a day to day basis he was doing ok. But slowly it started to wear down. Joey might be 12 but he has the mentality of a 4 year old. He has no ability to entertain himself at all. So if you are not constantly paying attention or participating with him he gets frustrated. He started to have arguments over trivial things like taking showers or brushing teeth. Anything and everything he would argue about. Its exhausting. On 3 separate occasions we had to have the police to the house because he escalated and began breaking things in his room. Each time they would come out he would calm down for a minute and we would have yet again another court date. Exhausting. Nothing was going anywhere. There are so many people involved with Joey and yet nothing seems to happen. Now don't get me wrong I know the people involved work very hard including his case worker, but its the powers that be who make the decisions that take their sweet time because its not effecting their lives. Anyway, Joey has had one appointment with the new psychiatrist at cincinnati childrens which was several hours only to have them look at me bewildered at the end and telling me that they were going to look over everything and we would talk again in a couple of weeks. Now I didn't expect them to make huge changes right than and there but it would have been nice if they could've had a game plan. I guess we shall see at this next appointment.

With everything piling up I couldn't imagine anything else. Silly me I should know better by now. Paul had gone out of town and my dad and father in law were managing the kids for the weekend while I worked. Everything seemed to be going well, I hadn't gotten any phone calls.
I got home on Sunday and Joey asked to go play with his friends. Sure why not, I told him to be home at 9 and went about some house work I had to do. Joseph came in the door about 840 and from the second he stepped in the room I knew there was going to be a problem. Joseph has a very distinct look when things are going o be bad. I can never describe to anyone how it is but his eyes are vacant and he just grunts and screams. Joseph came at me pushing me into the door. I grabbed my phone and called 911 immediately knowing there was no way this was going to end well. Joseph punched me in the face and slammed the bathroom door shut. I could hear a commotion in the bathroom but as long as he was in there me and max were safe. Dispatch said police were on the way and hung up. Joseph came flying from the bathroom and at Max and I. I managed to get us into max's room hoping to wait it out. Joseph forced his way in the room and threw a old doorknob at max nearly hitting him. Joey had managed to get between max and I and I was terrified. Max tried to run at me and Joey grabbed his shirt throwing him to the ground. I manged to get hold of Joey and contain him. Max was crying and I looked him telling him " run max run."  Little max got up and ran. I lost my ability to hold Joey back anymore. I ran after Max to keep myself between him and Joey. Joey came running after us but luckily the police showed up at that time. Joey was subdued by an officer. While he was being calmed down another officer came to survey the damage. Joey had destroyed the bathroom and thrown his medications everywhere. The officers took pictures and my statement and than took Joey to detention. Max was not seriously hurt and I picked up the house. Jesus what is happening.

The next day we had court again. God I am so sick of court. His caseworker, lawyer, probation, and CASA were all there. Joseph admitted to the charges so we could get him on probation and he returned to detention until a safety plan could be put in place. After several long conversations with everyone my head was spinning. Again there is concern for safety and with that we start to have little choices if this continues to happen. I have been told PPLA is something, which means he goes back into child services custody for placement but there is no time limit like before. This is not a option as far as I am concerned. I mean  if we can't do it foster placement sure as hell isn't going to be able to, he'll bounce from place to place and not get what care he truly needs for his issues. What I believe needs to happen is he needs to be admitted into the hospital at cincinnati childrens for a medication wash. I don't know anymore if any of the medications are helping or if they are making things worse for him. Obviously he isn't stable. I mean what if we take him off medications and he gets better? Or he doesn't get worse than there is no point to the medications. Or there are other possibilities for medications that might be better. Just too many variables and I certainly don't want to make any decisions about Joey and our family without knowing there is no other options.
Now this seems simple enough but I can't get anyone to listen or step up and do it. His previous psychiatrist wanted nothing to do with it. He is just starting with new psychiatrists and they seem a bit overwhelmed with him. So I reached out to his neurologist to see if we could get anywhere because frankly we are running out of time and so now I wait. His neurologist reached out to the psychiatrist and I am simply waiting to hear what anyone has to say. In the meantime Joey is back home from detention and seems ok but I feel as though I am always holding my breath waiting and hoping nothing happens.

Well ladies and gentlemen thats the short version of the last several months. I will try to do better at updating but quite frankly I am exhausted most of the time from dealing with everything. I just hope at some point one of the many people involved will be able to see that we need to get Joey unmedicated and see what his baseline is. Thank you again for listening. Love you all.

We were almost there....

It's been a very long month for our family and I have not done my blogging duties keeping things updated. So since I am awake very early this am I feel it is appropriate to update everyone. Joseph was doing well and things were going along as planned. He had started the homeward bound path where he was spending 4 days a week with us and the other 3 at the facility.

It all started one day as I was heading into work. I got a phone call from the facility and it was Joseph, there had been an incident. Joseph was on the phone making little sense of the situation. Joseph had said somehow he had gotten ahold of broken glass and in a moment of rage and frustration cut his wrists. Now he did not cut deep enough to require immediate medical attention but he said to me in a very serious and desperate plea " Mom I need help, I can't control myself." I spoke with the family teacher at the house telling him I felt Joseph needed to go to his psychiatrist for crisis evaluation. The family teacher understood my concerns and called the administrators. To my horror I received a call back 5 minutes later telling me the administrator stated " If he is calm now there is no need to take him for evaluation." I made the decision for my sons well being at the moment to leave work and drive 2 hours and pick him up to take him in myself.
We got to the hospital and Joseph was clam throughout the situation. His psychiatrist made an emergency appointment for him that friday for evaluation. I was to say the least upset at the way I was treated by the crisis staff and ER, I am certainly not ill informed when it comes to the care of my son and I was talked to like I had an IQ of 50. But that is neither here nor there I guess. I took Joseph back to our home and breathed a sigh of relief that his psychiatrist would be seeing him soon. The following day I felt Joey on edge, what was going on in his little mind was a mystery but soon it would all boil over.

That evening I told Joseph he needed to shower. He said to me he wouldn't until I had come in from outside. I walked into the house and simply said "ok I'm inside time to shower." That is when it all fell apart. It all happened so quickly I couldn't even tell you specifically what happened. He came around the kitchen counter and started pushing me, screaming and grunting. I tried to calm him but I could see he was already gone. He reached for things and began throwing items. I shielded max from the onslaught of items. I knew I wasn't going to be able to get control of thee situation so as I shuffled max into our bedroom and closed the door to keep him away from danger I called 911. Flashbacks of memories long since buried I tried to remain calm and explain the situation. Joseph got a hold of a sharp tweezer like object and ran at me. I was able to avoid injury but he was in full meltdown mode. Luckily Wayne was there and was able to get Joseph on the ground. The police arrived a moment later and as they walked in the home and wayne let go of Joey he took a swing at Wayne. The police handcuffed him and he began to calm down. Max had escaped from the bedroom at this point and ran up to where Joey was saying " ok? Joey, Joey ok?" It was depressing. I tried to the best of my ability to explain the complicated situation with Joseph and was very lucky to have an understanding officer. They transported Joseph to the hospital for evaluation and again life began complicated. With so many people involved, Marsh had to be notified and refused at that time to have him come home if he was discharged, CSB had to be called and because it was late we only get an on call caseworker and not the person we have worked with for almost 2 years, and of course the hospital and psychiatrists. What a mess but after several hours Joseph was admitted to the hospital. I couldn't believe we were back in the hospital! I knew it was the right choice but really at this point in treatment.

Four days he stayed and no changes to medication or word from the psychiatrist. He did however seem to be better for whatever thats worth. I thought its been several months since a big incident thats ok. We know things won't be smooth always but its over now and we can move forward. Of course this brought Joseph back in front of the courts again and the case will be held open again for monitoring but the worst had passed or at least I thought.

The next home visit was uneventful and all appeared to be returning to normal. It was going to be an exciting time for the family, Christian was home for the summer and everyone could finally be together. I thought all would be well but I should have known the circumstances that we put everyone together in was not going to turn out well and it didn't.

I was at work again at the end of my shift. My father had Joseph, Christian and max at his house, the first time Christian and Joey had seen each other in almost a year. I was getting ready to give report when I get a call. The first words I hear are " the police are here." My father proceeds to put the police officer on who tells me there is significant property damage and Joseph had pushed the 2 year old against the wall. I shut off... the officer kept talking but nothing was registering as I told the on coming nurse I had to go. After much time there were several variations of what happened but to the best of our ability here is as close as we will get to the truth. Joseph and Christian were walking back from the park together and Joseph had told Christian he liked his shoes and how it must be nice to get new stuff all the time. Christian responded by saying " I have been away from my family for 2 years and it's all your fault mother fucker." Probably not the best response but truthful in Christians mind. Well this very statement set forth a series of events that would change the course of treatment for Joseph. Joseph went into a rage, broke Christians headphones and mp3 player. My dad heard Christian screaming from the front of the house to come out and see Joseph in throws of storm that couldn't be stopped. Joseph screamed at max, took away his sippy cup and pushed him into the wall. Destroyed several items in the home. Christian was able to get max upstairs and into a room where he locked the door till all was safe. When I got to the house it looked as though a crazed person had torn the place apart. The officer on scene was the same we had dealt with the time before. Joseph was already in the police car and the trouble with so many involved was already becoming apparent. Joseph went to the hospital again only this time his psychiatrist didn't admit him. He went back to the facility that night. Again this put a chain of events into motion that left my head spinning.

The facility stated they were discharging him on the 25th of June regardless but there was obvious concern for safety given the last episode. Our options were to place him in another facility. After long meetings and much discussion I didn't feel this was what we should do. Our neurologist made it pretty clear that Joey's psych issues were secondary to his neurological disorder. Taking that in I don't feel that another psych facility was really going to do him any good and if anything it would simply cause more harm. I am very blessed to have the case worker and CASA that we have for our family who are on our side and agree. With that being said they have fought to extend Joey at Marsh for a brief time and are working to get him a respite worker for when he returns home.

I know that despite concerns I have I want Joseph back with us. I want to be able to take of him and continue to advocate. I am thinking we look into him seeing a psychiatrist at cincinnati childrens to coordinate care with his neurologist. I know that again I see him deteriorating cognitively. I think his decline became even more apparent to me after my mom came out. Seeing him through the eyes of someone who hasn't seen him in a year made my heart break all over. Our neurologist said in his last email that

 " At this point the 3 main possibilities are

 1.     there is a progressive, degenerative condition that explains his problems

2.    he started out with an undiagnosed genetic problem that is not progressive/degenerative but which makes him more like to have psychiatric symptoms over time AND more vulnerable as well to side effects from medications

3.   he developed a problem in early childhood, which is as of yet undiagnosed, which caused some regression and then subsequently this makes him more like to have psychiatric symptoms over time AND more vulnerable as well to side effects from medications."

I know at this point all we can do is wait. Our CASA is looking into other options for treatment as well. I know I just want him home. 

A long and painful process

So after the disappointment in the ER at Cincinnati Childrens the anticipation of the neurologist appointment was weighing on all of us. After the first few minutes I knew that it was going to be different than every other experience we had ever had. We had a real conversation with a doctor who listened. The first step for the neurologist in trying to determine what was going on was to get an MRI and run some chromosomal tests. The blood work was taken right in the office at that time. I was both shocked and angry that this test required nothing special at all, it could have been done years ago. The MRI needed to be scheduled for another day as Joey would require sedation, a fact I knew would be needed but still worried me. We scheduled the tests and I continued to be amazed at the staff. The RN at the MRI facility actually asked me how I was doing with everything. The day of the appointment a child life specialist was there to help Joseph with the process and even bought him a football for being so brave. He did well with the whole procedure it was probably more difficult on me than him.

The long wait. It seemed like months but in all reality was only a few days before we heard from the neurologist. I of course was at work and unable to speak over the phone when the doctor personally called me, again something unheard of for us. He sent a initial email that stated

Hi Mrs. Dicola,

I tried calling you but there you were not in. I left a message. I hope email is OK. The MRI did not point toward a specific diagnosis. I do think there is some atrophy – some unexpected “smallness” of the thinking part of the brain. This was what the CT showed. Our neuroradiologist, who is very experienced at looking for rare diseases, did not think that the pattern was a typical result for conditions causing the brain to deteriorate or degenerate. I agree it is not typical and certainly it did not show us any of a number of classic findings for rare diseases that cause severe behavioral disturbances, tremors, etc. Even if we had an MRI from when he was 2-3 years old for comparison and if that prior MRI were completely normal with no suggestion of shrinkage, we would not have a specific diagnosis at this point. There just aren’t any changes that are specific for a particular diagnosis and, fortunately or unfortunately, the MRI does not help guide us toward any other types of blood tests or spinal fluid tests. I do not recall if your son has seen a pediatric ophthalmologist (who dilates the pupils with drops and looks at the retina). Could you let me know? Sometimes this can provide important diagnostic clues about the brain and if this has not been done I can send in a referral. That might guide us toward other blood tests.

My first reaction was not good to say the least. All I could think was great now we have more high definition pretty pictures of Joeys brain that told us what we already know. I had questions. So with all the composure I could muster I sent a reply. 

I am sorry I didn't get to your call I am at work. Joseph has not seen a ophthalmologist. If the MRI really didn't point to anything specific why is he getting worse? Did his blood work come back normal? I am at work till 7 pm tonight you can reach me on my phone here at 000-000-0000 or I will make sure to have my cell on me. I'm just wondering what the next move is.

I would like to take this time to thank the people at my home away from home who were supportive that evening while I had a little mini meltdown. 

After a night of sleep and still more anticipation and anxiety I received a response. 

Dear Mrs. Dicola,

That’s no problem – I can be difficult to reach as well.

 Joseph has not seen a ophthalmologist.

 The back of the eye is the window to the brain and sometimes shows problems that are a clue to diagnosis. He needs to see an experienced pediatric ophthalmologist though and not an optometrist specializing in glasses. Would you like me to refer you to one here? If they find something it could be very helpful, but to be honest the chances are not that high. My view is that this is a good idea anyway.

 If the MRI really didn't point to anything specific why is he getting worse? 

MRI shows many things, but not all things. The findings on his MRI don’t show us what kind of disease might be causing him to get worse or what happened back when he was little and he started having problems.

 Did his blood work come back normal?

Yes the tests I sent did – there are hundreds of rare diseases that cause severe behavior and learning/thinking problems and that can be progressive. Some we know tests and genes for, others we do not.If the ophthalmologist identifies particular findings that would guide us towards blood tests related to those findings. If not, there are still some other blood tests we can send but at this point the chance that any of them would give us a diagnosis is low. 

This can be a very long and painful process. I (and all neurologists) have undiagnosed patients with serious problems. Sometimes, new findings become apparent over time and a diagnosis is made – for example I follow twins that had psychiatric problems for a number of years and then at age 17 some findings emerged which allowed us to figure out the diagnosis.

So there it is folks. It is going to be a long process and it might be years if ever that we truly know what is going on with Joey. At least it appears that we have a doctor willing to continue to search for for answers with us. The hardest part is not knowing, not knowing the prognosis or course this will all take. I guess all we can do is just continue to forge forward and do the best we can. In the meantime I just continue to be grateful and blessed by my family and friends and there unending support. Without all of you I would never be able to do this. 

25 hours.....

I can't take it anymore. I am so sick and tired of pass the buck. Let me tell you the latest in the long list of disregard for my son. On Saturday Joseph started reporting hallucinations both auditory and visual. He was not dangerous but he was scared. Asking me "Mom when will all of this stop?" I called the group home because he was on a home visit and they told me to take him for evaluation so I did. I went to my ER where I trust everyone. The care we had there was amazing and I thought finally we will get somewhere when the attending seeing him didn't just blow it off as a psych issue and said lets get him down to Cincinnati Children's where they can evaluate him for medical reasons and admit him to get some answers. I was elated. So transport comes to take him and I follow. After we arrive and our put in a room we see a medical student for about 10 minutes and some blood work is ordered. After several hours a different medical student comes in and says "everything looks OK and if you are comfortable we will discharge him since he has a neuro appointment so close the neuro fellows believe he can just be seen than, we want to call out to psych and see what they think." Needless to say I was not happy. I told the medical student No psych does not need to be called, he is followed very closely by psych already and is in a treatment facility. He left the room and than the attending finally came in. She went through the same speech and when she was finished I told her, "if all you were going to do was blood work and send us home there was no need to have us transferred here in the middle of the night, the hospital we were at could've done that, you couldve called neuro before hand and seen if they had any idea about admitting him and saved us the trip, the expense and the stress for Joey." So after 25 hours awake we were no better than before we went.

Not only am I exhausted but I am upset. I feel all alone on this. I know my friends and family are supportive of everything but the weight of all of this is crushing me. I feel that I should do this on my own. Someone said some interesting things to me through this ordeal that this can be an inconvenience to everyone. I feel if that is the case I am better off doing it alone. It might be difficult for me to do but better to do than burden others. I plan to move forward and pick myself up. I will continue to fight for Joseph and I will not give up till someone can give me some answers. I love my children with all my heart and I have discovered that their well being is front and center in my life and will always be that way. Maybe I just don't have room for anyone else because when things get tough so far all I have ended up with is more hurt knowing that those who should be there feel its an inconvenience.

Joey has his appointment in one week and at that point I hope and beg that this doctor will listen and say I won't stop till I have an answer, but my faith in that is teasted....

A mothers instinct

So I went around the red tape and took Joey to the ER to get his head scanned a couple of weeks ago. During the focused neuro exam Joseph had difficulty lifting his left leg, tracking with his eyes and coordination tasks. I knew I had done the right thing. The results of the scan were not what I expected; it showed he had mild/moderate atrophy of his frontal and parietal lobes inconsistent with a child of the age of 11. What does this mean? I don’t know….

Frontal lobe atrophy is a reduction in the size of the frontal lobe, the foremost area of the brain. Result, changes to its shape and structure can cause a variety of problems. Patients with frontal lobe atrophy may experience it as a standalone issue or in association with an underlying disease. Many neurodegenerative diseases like Huntington’s are associated with shrinkage in the frontal lobe over time. Patients with this neurological condition can develop planning, emotional regulation, movement and critical thinking impairments. Sometimes the condition onsets slowly. The symptoms are sometimes mistaken as signs of mental illness before more progressive symptoms indicative of neurological problems develop. For example, a patient might have disorganized thinking, emotional outbursts, and hallucinations. As frontal lobe atrophy progresses, the patient may start to develop movement disorders and more obvious neurological deficits. The frontal lobe helps the body plan and executes voluntary movements. Patients with degeneration in the frontal lobe may move more slowly, shake or have difficulty with fine motor tasks. This can also affect speech and eating, as the patient may have difficulty swallowing and articulating clearly.

So in desperation reaching out to every doctor I know and some my friends no we have come up empty handed to any thought of what this means. We have an appointment with a pediatric neurologist in April and hopefully that is where we will find answers. My biggest fear is that we have been poo pooed away so many times in regards to this being an organic cause I just hope the doctor looks past all of Joseph’s psych diagnoses and looks at his symptomology. He has never stabilized; he has never gotten any better. This is all just a lot to process. We have spent the last 3 years institutionalizing my son thinking that was the best treatment…. We have spent the last 3 years with our family separated thinking we were making the best choice. I know people have said “you only did what you thought you had to” that doesn’t make me feel better.

There are so many questions and no answers. In the meantime Joseph seems to be on a back slide again, last week ending up in full blown rage stabbing himself 5 times and ending up on 24 hour watch. My heart is breaking and every day that passes this is getting harder to handle. I know that I am trying to keep it together but I am slowly crumbling. We are putting together a synopsis of his medical history to bring with us and in plowing through all the records I find myself becoming more angry and sad. Reliving all the events. At one point a hospitalist at Phoenix children’s hospital said in a note, “If headaches persist, recommend outpatient neurology consult.” Do you think anyone ever told us or followed up?! I shake with rage as I write this thinking we might have had answers 3 years ago.

All we can do is wait and hope that this time we will get some answers.

Why cant they just scan his head!?!

So I will bring this subject up. Those of you that know me know that I have been pushing doctors over the last several years to do an MRI or CT scan of Joeys head to make sure that there is no organic cause to his issues. My fight for this has moved up several notches in the past two days because of some disturbing developments.
Joey has had a fine hand tremor ever since the seroquel incident and we have learned to manage it and I think Joey has learned to live with it. However on his last home visit Joey did not just have a fine hand tremor  his whole body was tremoring. I can only describe it as Parkinson like tremors. Now what truly worries me is the sudden increase in severity, just a few weeks time. I am aware that the medications can cause a variety of these types of side effects but I can not wrap my head around the seemingly sudden onset. He has had no change in medications or dosages, he has had no major weight loss or weight gain. I just can not figure it out. I am concerned that his liver function could be impaired and that could be causing his metabolism of these medications to be compromised.
My next worry is the sudden slowing of his cognitive functioning. I again am aware that the medications could attribute to this but it seems to be a overnight development. Joseph has great difficulty in getting a full coherent  thought out. It takes great time for him to develop a full thought process and when he manages to do so the thoughts are so disorganized its often difficult to follow his train of thoughts.
He has complained of headaches since the dawn of time. Anyone would think this would be reasonable to say lets scan his head and make sure there is no issue. So what if it comes back negative at least we would know. But what if maybe just maybe this entire time we have treated my son mentally ill and he just has a lesion or tumor? The frustrating part is the tunnel vision by every doctor I have encountered that simple blames everything on his mental illness or associated medications. Mentally ill people get medically sick too and all symptoms of mental illness can also have a medical reason. I saw everyday in my field people with far less compelling symptoms get ct scan after ct scan, I don't think its too much to ask for them to extend the same thought to my son.
Well that is my rant and rave for the day. Let the battle continue and hopefully one day someone will do it so I have a concrete evidence that there is nothing going on. In the meantime the doctors have ordered to check Joeys lithium and depakote levels again. I will keep you posted on the ongoing fight.

Baby Steps

So its been about a month since I have updated everyone. It's difficult at times to keep up day to day because the changes in Joey are so subtle that its seems a waste. December was a difficult month for Joey but we knew it would be going into it. He always has a hard time around the holidays but we enter the new year with high hopes for him. Its been said that the anticipated return home for Joey will be in June. I have many feels about the situation. I know that statistically Joey will soon not be benefiting from long term treatment, he still has a way to go. I know that Joeys disease will forever be a process and it will be a long time in the future if ever we have it fully under control. I also know that Joey has shifted from out of control behavior caused from his bi polar to behavior within his control caused from his conduct disorder. I have a harder time with later simply because he can control himself he just chooses not to. With that being said we have made big changes to his treatment plan. Joseph has a set list of expectations to meet in order to have privileges especially home visits. Joey must attend school through the week and not have any restraints. He has had two weeks of learn the hard way by having home visits canceled because of his behavior. It is disappointing but we as a team feel it is how to shape his current problem. We have also expressed this through the court. Joey is still being monitored and now the court has shifted thee view from a mentally ill child who has no ability to control his actions to a child with mental illness who has some stability on his disease but is making choices to still have behaviors. How this helps us and him in the future is its setting up another governor in place that can help curve the behavioral choices he is making. Not that anyone wants to see their child in trouble with the law but Joseph will need to realize sooner than later that there is real life consciences to his poor choices. He seems to be slowly getting the picture with all this in place but only time will tell. All I can do is hope that the closer we get to him coming home the more support we have in place for him and the more he develops the ability to make better choices in life. I will keep everyone posted and I again can not begin to express the gratitude I feel for the support received.

Mommy....Am I going to be like that?

In the wake of the tragic events that occurred this week I feel it important to share how that effects our family. While many might have to answer the questions of their children asking " Am I going to be safe at school?" or "What if someone like that comes to my school?" But in our family every time one of these tragedies happens I have to answer the question " Am I going to be like that?"
You see what Joey hears is that these bad people where sick in the head. Joey knows he's sick and knows he can be violent. So while trying to process all the events that happen I have to convincingly tell my son that "No, that won't be him."  When in all reality I don't know.
This might not be the politically correct thing to talk about but I am going to put it out there. I really don't know what the future will bring for my son. I know that the older he gets the less control I have to ensure he takes his medications and goes to the doctor. I know I can instill in him day after day how important it is to take his medications but when he is old enough there will be nothing I can do. I know how devastating the last weeks events were but my mind does not just go to the victims of the crime but to my son and how I have no way of knowing if he will slip into a dark future.
Now I don't think of this daily or even monthly but the thought is there. Everyone can say, "your doing all you can for Joseph" and "it's different." But if I am honest with myself, it's not. Joey has been so psychotic at times he didn't know who Paul and I were, he thought we were poisoning him and he's "protected" himself with weapons. We continue to struggle everyday with Joseph. We tell him all the time how much he is loved and how many people care for him but in the end I don't think that is enough. 
Who knows what lies ahead of us but I will say if there are not changes to the mental health system in this country events like this will continue to happen. My greatest wish is that Joseph is not only protected from acts like these but that he will never be the one who causes such sadness.

A damn cruel disease

"It must be remembered that for the person with severe mental illness who has no treatment, the most dreaded of confinements can be the imprisonment inflicted by his own mind, which shuts reality out and subjects him to the torment of voices and images beyond our powers to describe."

-Anthony M. Kennedy
U.S. supreme Court Justice


Here we are 11 months into treatment. Joseph has shifted from uncontrolled random outbursts and violence to controlled random outbursts and violence. I would rather the first of the two. At least I could forgive the actions. I know in my head he is still sick but I still have a hard time because on some level he is making calculated choices to do bad things.

I feel I may be slowly loosing my sanity in this whole process. The stress is killing me. I can't sleep and when I do I am plagued by nightmares that are difficult to differentiate from reality. What if Joey's disease make me insane? Not in the contagious disease type way but the there is only so much one person can take kind of way.

We are filing an extension for Joseph to stay in the facility for another 6 months. They are starting to say that there goal for discharge is June of next year. There is a part of me that is relieved and another part that is terrified. I am mostly terrified for my ability to get everything together by than. I just got the joyous news that the child support would be increased to nearly 600 a month to pay arrears owed. Than the cascade of  things that effects. Paying off Joey's medical bills, saving money for a house so we joey is discharged he has somewhere to call home, saving money so when he comes home we can afford what it costs to have a mentally ill child. And here comes the tears and panic attacks. I know everyone keeps telling me to take it one day at a time but when you have a chronically ill child you have to think forward. I'm 31 years old and this was not supposed to be my life. I worked hard to get through school and provide for my family and now I am working days on end and still not getting anywhere. Day in and out I think, this is it, this is my life.

In the midst of all of this Joey going forward and backward never really making progress for long. Will anything ever at least be ok? And will it be ok before I loose my grip?

What if this is as good as it gets?

So a few weeks ago Joseph had an overnight visit. I was anxious I'm not going to lie. The last time I had Joseph with us unsupervised max and I were locked in a bathroom with him beating the door as I called the police. However I set out trying to be as positive as I could. It's not as though there was any "big" incident that caused my disrepair it's just as though nothing had changed. The tension was palpable. It's hard for those who haven't lived with Joseph can understand but I will try to explain.

In a typical household there is inevitably push back from children when asked to do tasks. With Joseph when you ask something as simple as please pick up the blanket from the floor the response is "no" and his body tenses as he glares at you almost daring you to push the subject. Its difficult because the parent in me wants to have him do what he is told to do but the other part of me knows the danger that everyone can be in if he is pushed. This situation is nothing different than how he was prior to going into treatment. Do you parent your child and pray he doesn't go ballistic or do you let him call the shots and in turn not parent him?

How? How could we be three years into all of this and almost a year at this facility and have made no progress?! What if this is as good as it will get? What if this is life until he is 18 and an adult? This can't be my life or his. I prayed that the following visits would go better but this left me deeply discouraged.

Are we at baseline?

I had a disturbing thought the other day while working in mental health at the hospital. Far too often we have patients come in during crisis however there are no services we can offer because they are functioning at their "baseline". The more I thought the more disturbed I became about this situation. Just because someone with a mental illness is functioning at their baseline they are not necessarily functioning at a level appropriate for society. I again think back to many of Joseph's hospitalizations and subsequent discharges where his GAF score was no higher than 40. A GAF score of 40 may not require acute hospitalization but it does not mean that he is functional for society either. A panic fell over me as I thought about Joseph being in placement for the past 10 months and how we have progressed from where we were we still are not a level that is safe for him to be at home. What if this is Joey's baseline? What if he will forever be at a level not considered in crisis but not functioning? There are no more institutions for placement of people with mental illness who are not fully stable for society. What will become of my son when he is of age? I know much of this is forward thinking that I need to be wary of but I can not totally block out the fact that he will not be in residential treatment forever.
That being said I have yet another panic point. He will not be in residential treatment for forever. At this point us becoming financially stable is getting more difficult. Despite our best efforts I feel the court could have cared less about our situation and the child support amount ordered. That being said how can we get things where they need to be for Joseph? He can't come home to my father in laws house where we have no space for him and all his belongings are piled in boxes in the basement. How will that provide the stability needed?! Shit! I am so overwhelmed I just wish there was an easy way. I know I must take things one day at a time but on the other hand how can we be prepared for Joseph as well?
Well we keep moving forward than backward and over again. I watch with anticipation for Joseph to have a "breakthrough". We will get there someday..... I hope. Until next time. Thanks for reading and supporting us in our journey.

Project Believe: Our Biggest News Yet

project Believe: Our Biggest News Yet: Project Believe grew this week! As we have geared up to make Christmas Magic happen for the kids at Cincinnati Children's Hospital Co...

The Miracle Med?

So its been awhile since the last blog update. The last time I wrote Joseph had had a major meltdown. It took me awhile to get over the anger, hurt and frustration of it all. When we went to see Joseph's psychiatrist following that incident I laid the cards out that something needs to happen. I simply stated that how at this point in time and Joseph being 8 months into his program are we still having major outbursts that put him and others in danger. Joseph's psychiatrist suggested another medication, naltrexone. Originally used for opiate dependency they have started using it for people with problems of obsessive thought. The rational in how it could help Joseph is that if we lower his obsessive thinking we will lower his anxiety and therefor lower the incidents of outbursts. Many thoughts run through my head, Oh great ANOTHER medication however I am so desperate to help my son get better I guess I would do anything.
 So down the road we go again trying something new and so far its working. Since Joseph has started the medications he appears to be better. Its not that he is not still having struggles but he appears to be able to stop himself and process what to do before just acting out. Everyone is celebrating and part of me is as well however I am cautious. Joseph has a very long history of  doing amazingly well on a drug for a sometime and than poof its almost as though he's switched with a placebo. I just don't want to act as though this is the cure all till we have substantial amount of time behind us.
That being said Joseph did really well for about 3 weeks and than this past week started having struggles again. Now its not nearly to level hes been at but he still cant make it through a full day of school. I don't know if Joseph will ever reach a time he is fully functioning. I just hope and pray that when he comes home we have services in place to help us out.
Now for the neurologist. Well I think he was a very capable neurologist who did absolutely nothing! We spent 40 minutes explaining everything for the past 11 years of Joey's life to have him looked totally puzzled and than suggest more medication. He spouted of something about there being the possibility of some temporal lobe dis regulation something or other. Either way still no imaging. I just wonder if we will ever have the answers to Joseph or how to help him.
I know that Joseph has to start to process his life. I know it seems like a hard thing to ask a child to do but he has some major unresolved issues. Especially with his biological father. He still has an idealized idea of his dad. He will talk about him and acknowledge he has done bad things but in the same breathe he will talk about how he wishes he could talk to him. Its hard to handle. Joey calls Paul dad and there relationship is that of a father and son. I would never tell Joey what has happened I simply say that his dad loves him but he has made a lot of bad choices in his life and Joey needs good people around him and if when he gets older he wants to contact his dad he can do so. I hate that this is how it is but it is what it is. I hope Joey will continue to move forward with the loving family he has.
We continue to fight for our son in the hopes he can come home to us soon. I pray we can soon get to the bottom of his issues and treat them appropriately instead of the shot gun effect of treat it all and hope it sticks. We still have a long road ahead but maybe just maybe we are headed down the right path.

It was just supposed to be a dentist appointment

So Joseph had a dentist appointment today which I wanted to go to because he has some serious issues with plaque etc that I want to address. I went up to the facility and everything was fine, I rode along to the appointment since it was 45 minutes away. It was Joseph, myself and a staff member who works with Joseph regularly.
Joseph had a little issue at the dentist so I stepped out to the waiting room and the staff were able to get Joseph to calm down and finish his exam. However when he was done he left the office before the staff from the facility was ready to go. I told Joseph to wait but he went ahead anyway visibly agitated for some reason unknown.
We got into the vehicle and started to head back to the facility when Joseph began acting up, throwing things at me and at one point he grabbed the seat belt of the staff member driving trying to choke him. the staff tried to redirect Joseph but the efforts were futile. We pulled over to a gas station to try and get the situation under control.
The next bit is simply flashes of what I can remember from the chaos that ensued. Joseph got out of the van and went immediately for anything he could get his hands on. The staff member was trying to control the situation but they are limited on what they can do. Joseph was throwing rocks and anything he could his hands on at the staff. I moved to get out of the way and Joseph grabbed a clipboard ran after me and hit me with it in the arm as I tried to shield myself. I went into the gas station hoping to prevent further chaos but Joseph followed. He picked up and apple from the stand and from a foot away threw it at me striking me on the left side of my face, the apple burst and people just looked on horrified at what they were seeing. He went back outside and continued to throw things, even opening a package of water bottles displayed in front of the store. I felt trapped, if I went out of the store everyone and everything was a target but it was the same  in the store. There was no where to go but wait for the police to arrive.
People walking in and out of the store stared asking "what is wrong with the boy?"  what can you say to that?
After what seemed like an eternity the police showed up. five cars in all as we are quickly trying to explain the situation Joseph runs. It took several minutes of them chasing on foot and in cars before he circled back around to the gas station where a officer was able to get a hold of him. Joseph was fighting it so they placed him in hand cuffs and put him in the back of the car.
The officers gathered to try and understand what was going on and all I could do is stand there as if I was watching a movie. I snapped back to reality when the officers asked me to fill out a statement. One very kind detective had me sit in his car. It took every ounce of my being to concentrate on what I was writing. Each word was difficult to form. After some time I manged to had over a piece of paper that looked like chicken scratch. The officers stated at that time they were going to take him down to the station till they heard from the judge. The staff and I fallowed.
We arrived at the station and one officer called the judge. Given that Joseph is 11, he is already in a facility and is already in CSB custody they determined to release him back to the facility and forward the complaint to Miami county where his file is. We still had to wait for a supervising staff to come from the facility to the station to transport Joseph.
I felt a fool in the police station telling the officer that Joseph really is a good kid just with problems as she looked at me with the sad, pathetic look. I hate being this person. I fear I will one day be a parent on tv saying, he was such a good kid. I don't know at this point how Joseph will ever be a part of society. I have no idea what set him off or why he does what he does. I sometime just want to scream at him and tell him if you'd just knock this crap off life would be so much easier for you. I wish it was that simple, but right now I don't know what the answers are. I will just put this day away and keep praying this comes to an end someday.

Ten steps forward.... Fifty back....

It has been quite awhile since I have posted and much has happened. Joseph did really well with his family visiting and we were even able to enjoy his 11th birthday party but life certainly fell apart when everyone left. The week after everyone went home Joseph had some of his most violent outbursts to date. I am frustrated that his counselor didn't work with him more to prepare him to cope with this adjustment. Joseph seems incapable at this point to deal with any of life's problems in an appropriate manner, lashing out violently only to end up crying and depressed about the real problem he cant deal with. We are working very hard as a family and agency to have him get a new counselor who will be more effective for him.

We had also begun taking Joseph off the ablily in hopes to minimize the amount of medications he has to take. That did not work out so well. Joseph takes 7.5mg twice a day and with just the little adjustment to 5mg in the morning and 7.5mg at night Joseph started having hallucinations again. I fear he will never walk through life without the daily effects of psychosis unless he stays on his medications. To hear the fear in his voice when he talked of the shadows chasing him in the hallways and the vivid scenes that played out during the night where terrifying for me let alone a 11 year old boy. I can only imagine what its like to live day in and out without knowing what is reality. I made sure at the first discussion of Joseph having psychotic hallucinations we moved to put him back on his regular dosage of abilify, since than he has not expressed the daily onslaught of hallucinations but I see him at times still weary of his surroundings.

My husband and I have also had to leave our home behind us and move in with my father in law. Josephs medical bills are burying us and we took a hit when the child support order for Joseph came out to be $500 a month. We cannot afford our home and the cost of Josephs treatment and stay afloat. Hopefully with this change we will be able to save money and start chipping away at the debt we owe to the hospitals.

Josephs placement has been extended for at least another 6 months. I feel as though we have hit a hard stop again. Joseph has made little improvement in effectively being able to deal with daily life events. I worry that his life up until 18 will be institutions. Don't get me wrong I certainly have not given up hope in my son I however see this continuing to be a struggle for years to come. I pray that those helping him in this journey continue to fight for this young man who has the potential to be great. I hope that he will reach a point in maturity that someday some of his conduct issues will resolve because he will realize how much easier and more amazing life can be if you don't make it a constant battle. I hope all of you continue to pray and support us in this journey. Once life has settled I will make a better effort to update more frequently. Thank you for your support.

A brief update

Joseph has been showing improvements with new changes to his treatment plan since the neuropsych evaluation. It was reported today that Joseph has had only 8 restraints in the last month which is down from 25! With this information I was able to have Joseph's psychiatrist agree to start tapering off his Ablify. I am praying that we can continue to get Joseph on the least amount of medications possible. His visits with the family from Arizona have also gone very well. I am concerned of how he will do when they leave but we will cross that bridge when we come to it I guess. Joseph is making small gains still but it is still expected he will remain at the facility for up to another year. I will take all the small steps we are making and just hope they continue.

Which is the lesser of two evils?

So a lot has happened since the last post. Sorry for the delay in updating everyone. Christian has arrived and has been staying with us. I couldn't be happier! The first night with Christian was rough get more doses of how this effects everyone in the family. Christian went to bed for the night and I decided to peak in on him before going to bed. I found Christian sitting on the bean bag on the floor. When I asked Christian what was wrong he just started crying. Christian says he misses Joseph so much and it was hard being in Joey's room without him. Christian and I cried together. Christian asked questions I didn't really know how to answer, Why did Joey have to get sick? It was one of the first times I think Christian really opened up about his feelings, I'm glad I could be there for him, I just wish I had more answers for him.

Now on to Joey. The neuropsych evaluation report is very thorough and I am extremely impressed. I won't go into the history portion of the report because well I've all ready done that in the blog but here is the rest.

Findings:
 Behavior: Joseph was on time for the appointment, and was accompanied by his mother and staff from the residential facility. Joseph appeared to be slightly older than his stated age, and was properly dressed and groomed. His level of cooperativeness was variable throughout the evaluation and he was alert with consistent eye contact. He completed paper and pencil tasks using his right hand with appropriate grip. Joseph appeared to understand test instructions and did not require frequent repetition. Spontaneous speech was fluent with no noticeable articulation problems or word finding difficulties. There was no unusual voice intonation. His thinking was goal-directed, with no evidence if a formal thought disorder. No difficulties with social reciprocity were detected until he did not want to complete a task. At this point he became defiant and required frequent prompting which resulted in variable responses to positive reinforcement. Joseph made the examiner uncomfortable on occasion due to his quick tempered nature. Nevertheless, he calmed down when tasks were stopped and something else was initiated. Joseph exhibited difficulty with behavioral self regulation including impulsivity. He also presented with mild physical restlessness, All other areas of motor functioning appeared to be normal, except for mild bilateral resting tremors of his hands. Joseph demonstrated no difficulty with sustaining attention. He reported sad mood and presented with frustrated and irritable affect. He would react with frustration and anger in response to failure or difficult tasks . His overall approach to testing was frustrated and testing could not be completed, as later in the afternoon Joseph refused to continue. He became very angry and walked out of the room. Thus, the evaluation was discontinued. Unless otherwise noted, results are believed to be an accurate assessment of his current neurocognitive functioning; variable effort/impulsivity appears to have vitiated a few of his scores.

The next several pages of the report are all the scores so I am just going to jump to their impressions.

Impressions:

1. Joseph has been historically diagnosed with ADHD, psychotic disorder NOS, bipolar, ODD, PTSD and IED.
2. Because of Joseph's emotional and behavioral challenges, current testing was limited to the morning session, as he refused to continue after lunch break and effort was variable on a few tasks. Nevertheless, we were able to assess multiple cognitive domains. Results indicate intellectual functioning to below average. He scored consistently or better than this level on tasks of gross motor strength, visual perception, expressive language, and speed of processing. While his scores on attention testing were lower than expected, hos effort of these particular tasks is questionable.
3. Although Joseph has a history of an ADHD diagnosis, a description of his behavior from both Ms. DiCola and facility staff as well as unsuccessful treatment with neurostimulant medication do not support this diagnosis. Rather, it is more likely that his aggression and impulsivity is better accounted for by a psychiatric disorder. Based on Ms.DiCola and facility staff report, it appears Joseph's aggressive and explosive outbursts are more behavioral in response to not getting his way.
4. Information from a review of records and clinical interview with his mother and facility staff indicate that Joseph has had a repetitive and persistent pattern of behavior in which the basic rights of others or major age-appropriate societal norms have been violated. For example, he often bullies others, initiates physical fights, has used a weapon that can cause serious physical harm to others, has been physically cruel to people, has deliberately destroyed other's property, lies and has run away from home on multiple occasions in which police have been called. Also, Joseph appears to have little concern for feelings, wishes, and well-being of others given his aggression towards people. Also, it was reported Joseph can misperceive the intentions of others as more hostile and threatening and can respond with aggression. Facility staff reported that Joseph lacks appropriate feelings of guilt or remorse as he frequently tries to put the blame on others. Thus, Joseph meets criteria for Conduct Disorder. Research states that self-esteem is usually low with those of conduct disorder and facility staff reported that Joseph frequently makes statements indicating low self esteem. Associated features are also usually poor frustration tolerance, irritability, and temporary outbursts, which are observed with Joseph. These problems have precluded his attendance in school or living in the home. A diagnosis of Conduct Disorder precludes one from being diagnosed with ODD or IED.
5. Emotionally, results from self-report and parent/caregiver report are consistent with the diagnosis of Major Depressive Disorder, Recurrent, Mild. His conduct behaviors are likely exacerbated by his depressed/irritable mood. Reportedly, Joseph has reported feeling sad/empty, irritable, fatigued, difficulty thinking, recurrent thoughts of death, and has experienced past auditory hallucinations. It may be that the hallucinations were secondary to the severity of his depression/mood given that they were congruent with his mood at the time. Joseph has a historical diagnosis of bipolar disorder. This is a diagnosis best determined by multiple observations rather than a one time assessment. However, Joseph's changeable mood during the day, which has been termed "rapid cycling" is too rapid and not typical of bipolar disorder. Therefore, we suggest that the diagnosis be reverted to a rule out diagnosis of bipolar disorder. Joseph has a historical diagnosis of PTSD; we had hoped to ask him more questions about his current symptomatology regarding this diagnosis, but testing was discontinued secondary to his refusal to continue. We believe it highly unlikely that a traumatic event that occurred at such a young age could result in current PTSD symptoms, as a person must remember the traumatic event.

Recommendations:
1. Joseph's physician is encouraged to refer him for a neurology consult for a more comprehensive medical work up. While a remote possibility, it is important to rule out an organic cause given the severity of his violent outbursts. His neurologist may want to consider an MRI or EEG.
2. Ms.DiCola reported no successful treatment of Joseph's behaviors with his current medications. She is encouraged to discuss this with his psychiatrist. Joseph may benefit from treatment in an inpatient psychiatric facility for medication assessment.
3. Joseph is encouraged to continue with outpatient psychotherapy. To date, the most promising approach is multisystemic therapy for conduct disorder.
4. Due to the severity of Joseph's behaviors, we recommend continued placement in a residential facility.




So there it is in brief. The whole report is actually 12 pages. So how do I feel? I'm torn. There is more research and approaches to treating conduct disorder however those who are unsuccessful in treatment grow to be termed antisocial personality disorder. Secondly I feel the time clock is running out on treatment for Joseph. Where he has should minimal improvement they have started home visits. We are past the 6 month mark of funding from child services and I think that because Joseph has parents and family who are involved they will push to move him out. Now please don't misunderstand me I want Joseph home more than you can imagine but not before he is ready otherwise all progress we have gained will be lost and things will get worse. I guess time will only tell right now. Joseph has court on the 26th and I believe the court will be a HUGE power figure in deciding what the next few months will bring. In the mean time I am scared and tired. I am tired of always having to fight to get him care. And scared because we aren't rich he will pushed out before he is ready. In the meantime I just keep fighting.

Pictures

A small victory

So where I left off.... We had the appointment with Joey's psychiatrist. He didn't necessarily agree with my theories however he agreed to start trying to tapper Joey down off the medications. I guess all we can do is see. The psychiatrist doesn't celebrate the small victories like we do but Joey is making small, baby steps in forward motion. The only stipulation to taking Joseph down from medications is he has to see an improvement in violent behavior or at least no back sliding, which I can agree with. We started with the propanolol  which is the least of my worries but it's a start I guess. If Joey does well over the next month we will look at the Abilify next which is defiantly on the top of my list. With the elimination of Abilify we can also tapper him off of cogentin. So with fingers crossed we go forward. The hardest part of the appointment was when Joey looked at me and said "Mommy when am I going to get better?" Ugh break my heart and all I could say was soon.

Joseph has been doing well. That same week he performed in the facility's play The wizard of Oz. Joseph has always been involved in drama so I am glad he can continue. To my great surprise he also performed a piano song he had learned this year. Joseph's artwork is also a huge accomplishment as many of you have seen on my facebook page. With all these new outlets opening up to him I can continue to hope he will find coping skills and outlets to express himself in a healthy way.

Tomorrow is a big day. I will be waking up at the crack of dawn to drive to Toledo for Joey's neuropsych evaluation. I just hope and pray that this gives us a direction to continue to help Joseph.

In the meantime I try and stay positive and continue to advocate for Joseph. I had gone on a letter writing tirade when the insurance company continued to deny us residential coverage for Joseph. I wrote letters to the Senator and even President Obama. I had received phone calls from various agencies in the government giving me avenues to explore. I was unbelievably surprised however when I received an email from The White House and President Obama himself. It's great to know that my frustrations and concerns have not fallen on deaf ears. On any level I will take these small victories last week and pray that this is the beginning of things looking brighter for my family. Stay tuned for more on this journey and thank you to all those who read and share.  

STOP STOP STOP!!!!!!

So when we last left off Christian had been diagnosed. A week into Christians treatment on lithium we had an incident. Christian had been in the pool with his Grandpa and was going to ride his bike to a friends house. Christian got down the street and started to feel "funny" I thank God he was smart enough to know something was wrong and turn around. He was headed home when he lost coordination and fell off his bike. By the time he got to my parents house he was having terrible tremors. My stepdad knowing we had been down this road before rushed Christian to the ER. The amazing ER staff brought him right back and started a work up to check him for lithium toxicity.

Lithium Toxicity can present the following symptoms:

• Diarrhea
• Dizziness
• Nausea
• Stomach pains
• Vomiting
• Weakness
• Coma

• Hand tremors
• Incoordination of arms and legs (ataxia)
• Muscle twitches
• Seizures
• Slurred speech
• Uncontrollable eye movement (nystagmus)

By the time the physician had examined Christian he was having the ataxia, hand tremors and muscle spasticity. They drew labs and took and EKG to make sure he was not having cardiac arrhythmia.  The EKG was fine... Thank God. More interestingly enough when his lab work came back Christian was not toxic he was actually sub therapeutic! The physician diagnosed Christian with sub therapeutic Lithium toxicity, yeah that's right.... This means Christian had a toxic reaction at a below therapeutic level. The physician gave Christian IV fluids and rechecked his levels to make sure they were dropping and I said he is not taking that medication any more. I have been down this road with Joseph and I am not doing it again. The psychiatrist has called a few times to say there are other options for medications we could try... I DON'T THINK SO!!!! Christian is much better and thank God has no residual effects from the reaction. 

This brings me to my next mission. For months I have been advocating that we need to try to bring Joey down from his medication and my feelings and requests have fallen on deaf ears. Joseph has been on medications for almost 2 years with NO improvement. At this point because of his sensitivity I don't know if the medications make things worse. Take Abilify that Joey takes, side effects may include increased aggression. Now don't get me wrong I know Joseph has some issues that need to be dealt with but at this point I don't know what is him or what may be because of his medications. Josephs levels are always therapeutic even during the most violent outbursts. How can that be possible? These medications are supposed to make him better. Its very easy for the doctors to put a child on medications but than no one wants to take them off. I know I agreed to medications for Joseph because I feel that at the time I was so desperate to try anything to help my son. Well now we are two years in and need a new game plan. I know the doctors will not do a true medication wash but at this point we need to start one at a time and see what happens. If Joey gets worse well we know they were helping some. If he gets better well than awesome! If he doesn't change at all than there was no benefit to having him on these medications anyway. I know what these medications do to peoples bodies and what they have done to Joseph's at this time I want to start fresh and see where are true baseline is with him. 

I spoke with his case worker and the director of his house at the residential facility and thankfully they are both on board with me. We have our medication review on Thursday both of them are coming to the meeting and hopefully with a united front we can get somethings changed and fingers crossed maybe Joseph will improve. Until than we are just running the coarse. Joey has his good days and bad but we continue to hope and pray that we figure out the key to making him better. 

Genetic Holocaust

The likelihood of developing bipolar disorder is many times greater in children with parents who have mood disorders. Researchers have observed that a first degree relative of a bipolar patient has a 13-35 % risk of developing a mood disorder. It has been consistently reported that the risk for a child increases significantly if a sibling has a mood disorder. That being said the psychiatrist have just diagnosed Christian. He started on Lithium last week. The bright spot in the sea of clouds is that the psychiatrist believe Christian is more of a "typical" presentation and not a severe as Joseph. Either way this sucks. The fear that we could be going through all this again. The fear that I will have another child I can't help. In all of this I am starting to question my own sanity. I am consumed with feelings of guilt, of every choice I have made as a parent. I get advice from everyone. Unfortunately it has come to a point that I don't think people even know what to say anymore. every direction I turn for answers I come up empty handed or with more questions. I am trying to put faith in the choices I am making and that the treatment or even diagnoses are right but the truth is I really don't know anymore. I feel so afraid and alone. I know that I have support from my family and friends and yet I feel a terrible weight on my heart that I am perpetually screwing up. Only time will tell I guess. Until I see positive results for both of my children I try desperately to hold on to hope that their lives will be happy and successful.

Change A Mind About Mental Illness

This Ad is amazing and so true.

Round and round we go

So Joseph has been at the residential since the first week in January. I would like to say he is getting better but I can't. The staff keep trying to give me hope but I feel lost. I keep trying to put on a strong front that this is where he needs to be and he is going to get better but I don't know what to think anymore. Nothing much changes from day to day. Some days are better than others but I feel something has to change soon. When he entered the facility he had court dates set because he was facing charges stemming from the last incident at our house. He was assigned a public defender and had a competency evaluation ordered. Last week Joseph had court and it was determined that they had found Joseph competent. I am not sure how to feel about it. Part of me knows this might help Joseph because the court can order treatment and evaluations etc however to sit in court and hear that my son knew what he was doing that day and knew it was wrong but did it anyway hit me like a ton of bricks. Anyone who has been with Joseph since the beginning of this mess will tell you how it has changed. Joseph's episodes used to be blind range and delusion in which you could see he had no control over what was going on or at times any idea where he was but now, now its different. He is calculated in his actions and at times even has a smile on his face when he is in the middle of a violent outburst.

I want them to start all over. He has been on this medication regiment for almost 2 years and not only has he not gotten better but he has gotten worse. The ramifications of my choices for my son way heavy on my heart and mind. What is this doing to his body and brain development? Is any of this making things better because it certainly doesn't appear to. Unfortunately this is a area of medicine that has little research especially for children, we don't know what the long term effects will be.

We visit Joseph every week and some visits are better than others. He is sometimes very happy and joyful and other times is so angry at me. He blames me you know.... He says I've put him there, I have done this to him. The times I really have to bite my tongue is when he tells me he wishes his real father were here because he wouldn't have let me put him there. Oh my gosh child if you only knew.

Joseph can not manage on any level. He is unable to maintain in school, home or in public. At this point in time he is restricted to the ground because he had a violent outburst off property with staff and put himself and others in danger.

As difficult as it is to have him home it is also very difficult to have him away. I have no control or knowledge of what is happening all the time. I know I need to learn to let go a little but this is my child and I can't make him better. My heart is heavy right now and on top of Joey's struggles Christian is struggling as well and I cant be there for him. I feel like a complete failure as a parent. I know what most of you will say is that I am doing the best that I can but when you cant help your children its hard to feel that way.

The ray of hope.... Joseph has a neuropsych evaluation at the end of May. I hope with the in-depth testing they perform we will have some new understanding of what we could be dealing with or how to help Joseph.  Until that time we just take it day by day and pray that we will see some changes soon.

This is Joey's favorite song.

It just keeps falling apart

Im not exactly sure what happened in October but it started small. Joseph was having difficulty with school and at home. He had quit football which was okay because those meat head, over weight wanna be pro football once were good 30 years ago coaches sucked every joy out of the game for Joey. Anyway it all started to fall apart and with each incident things got worse. Joseph was doing the in and out dance of hospitalization again. I cant even count how often we had to have police come to our house. I was getting phone calls from the school that Joey was becoming so aggressive and violent he would have to be removed.

I was starting down the path of residential for Joseph again and happy to find out that our insurance through my work had Cincinnati Childrens as their in network provider for residential. I did not get help from the hospital to help set up the referral for Joseph so it was up to me. I called Cincinnati Childrens and they remembered me from before. Joseph had no problem meeting their criteria and being excepted. But the insurance.... By the time we had gotten to this point Joseph had been hospitalized in Ohio 6 times. The insurance denied Joseph stating that we had not exhausted our efforts for less intensive means of treatment. Excuse me here but what the hell hadn't we tried!!!!!!!!! Meanwhile while fighting with the insurance Joey kept deteriorating. We couldn't get Joseph on medicaid for supplemental insurance because Paul and I make too much money lol.  We enlisted the help of Child Services. This would take us down another path. Our fist case worker was great she got to witness Joseph at his finest. He had been kicked out of school because of violence and was having a meltdown when she showed up at our house. We had meeting after meeting with every service the county had to offer. The problem was none of what they could give us we hadn't done for years already. We were getting nowhere with the insurance so child services started looking into being able to fund part of his stay at a facility. The day after Joseph was denied again by our insurance I received a phone call from his school. Joseph was with the school police officer and I needed to come pick him up. Joseph had assaulted his teacher. We had him admitted to the hospital again. I could not believe no one could help us. Assaulting teachers, jumping out of our car on the interstate, giving me a bloody lip, how could he not meet their "medical necessity"?!

Joseph had missed every holiday with us because he would end up in the hospital. child services eventually placed him in a therapeutic foster home till we could get funding lined up for residential. Joseph had problems in the foster home too. No matter where he went he was getting worse. Christmas was fast approaching a Christian was coming to visit. Joseph was going to come home to us for the holiday. He was home less than 6 hours. Joseph's I pod was not charged and wouldn't work right but he wanted it now! I told him he would need to wait until it charged and that set him off. He came at me swinging and screaming. I picked up max to get him out of the way as Joseph began throwing things. I made it to the kitchen where Joey cut me off and grabbed a BBQ fork, raising it up he charged at Max and I. I pulled the baby into our half bath and called the police. I could hear the destruction going on outside the door as I told dispatch to hurry. I thought he was going to break the door in. I heard the police come through the front door and started shouting stop police! Joseph took off outside and was running from them. The police officer got a hold of Joey and Joey kicked him several times. I stood in the house surveying the damage. The bathroom door had a dozen holes in it. All my Christmas nutcrackers were knocked over several of them broken. There were holes in the walls, an overturned table and broken lamp. The police officer told me not to touch anything. It was some officers I knew they had been here before. The officer asked what they are doing to try and get Joseph treatment and I gave him the short version of the story. They called the district attorney and filed a report this time with the hopes that with court involvement they could order treatment and the insurance company couldn't do anything about it at that point. So right before Christmas away Joey was again to the hospital.
After the first of the year it had been decided that Joey would go to treatment we were just waiting on Child services director to say yes to funding. We were running out of time on the therapeutic foster home and couldn't safely bring him home either. When we finally got an answer it was the worst choice of my life to make. I got a phone call at 6 pm and was told that Child services could fund Joseph's visit if we gave temporary custody to the state. To make matters worse I only had till midnight to make the choice because once I got paid at midnight we would have "too much money". After all the fighting and pushing I would have to give him up to get him help. Now everyone will say its only on paper and just for funding but does it really matter? We are still decision makers for him in a round about way and still 100% involved but this is what I have to do to get him help. I cried for days. I couldn't believe I had to do this. Joseph was transferred in the beginning of January to the facility and that is where he is today. We see him every week and talk to him everyday. I see such little improvement at this point I don't know what to think. I know it will take time but I am not seeing forward motion. I sometimes worry that I will know Joseph the rest of his life in institutions. The hardest part of all this is the inability to be able to help me son. I cant fix him, I cant take away his pain. I would give everything I own in this world to make him better.