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.