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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.