Thursday, April 19, 2012

Carolina Institute for Developmental Disabilities and a Hard Few Days

- from Christy

Last week was a big week for us. Josiah's long awaited and greatly anticipated appointment with the Carolina Institute for Developmental Disabilities (CIDD) was on Thursday. Our awesome developmental pediatrician Dr. Daniel Moran referred us to the doctors at the CIDD for a behavioral evaluation. His hope was that they would be able to assess and make recommendations concerning Josiah's medication, and that perhaps they could determine whether behavioral therapy would be beneficial for Josiah.

Before I get into the details of our appointment, I would like to share OUR feelings concerning medication. I'm "shouting" OUR simply because we firmly believe that every child and every family is different. Deciding to medicate is a very personal decision. There is so little known about Autism, and the disorder differs so greatly in severity. It would be wrong to think that the exact protocol for one child would work for all. There are no two Autistics kids the same! Each one has their own strengths and their own set of unique challenges. Our decision to use medication with Josiah came after years of trying any and every way to help him sleep. We didn't start using Meletonin until after Josiah turned three. The Meletonin helped Josiah fall asleep, but it did not maintain his sleep. By the time Josiah turned five, Jeremy and I knew we had to try and seek a different approach to help him. His nights were horrible, and his days were miserable. This past summer, we found out about Dr. Moran, and he referred us to Dr. Boyce, a fabulous neurologist who specializes in severe sleep disorders in children. With the help of both doctors, we began using prescription medications to help Josiah rest. Presently, his sleep is greatly improved. Not "normal" by any means, but praise Jesus, so much better. I DESPISE giving my five year old high powered medications, but I know that HIS quality of life was greatly affected by insomnia. Medication was our only option for improving this.

Jeremy and I along with Josiah and my Mama for backup went to the appointment. It was a good meeting, but it was hard too. We had a gut feeling just how severe things were, but it was a whole other matter hearing the doctor say it. We were told that Josiah is on the very high end of severe. This should not be confused with high functioning. What they were telling us is that Josiah is extremely severely autistic. In other words, completely disabled by the disorder. He has no self-help or coping skills. We have to help him eat, dress, fall asleep, calm himself, etc. The doctors also agreed that he most probably has brain damage from the meningitis or the treatment of the meningitis that he contracted when he was seven days old (that's a story for another day). He also has extensive sensory needs. On top of all of that, Josiah has SEVERE hyperactivity and impulsivity. On one of the tests given for impulsivity, normal range is a score of 3-5. Josiah scored above 50, and that is with medication. 

The doctors gave us some good insight and perspective. They feel like the pressure to continue seeking outside therapy is unnecessary, and they encouraged us that it was ok to view the purpose of school not for academic growth, but for the opportunity to learn to be comfortable in different settings and with different people. We are unsure right now when Josiah will return to school, but, when he does, it will be with a one-on-one support person and for only thirty minutes a day to begin with. They also made it clear that behavioral therapy would be impossible at this time. 

There were a few suggestions in terms of Josiah's medication. He is currently taking four prescription medications: Risperidone, Doxepin, Zoloft, and Tenex. The doctors suggested slowly weening Josiah off of the Zoloft, because he really is not getting much benefit from the drug. They want to increase the Tenex in order to help Josiah's impulsivity. The problem is that Josiah can only tolerate a very small amount of this drug without falling asleep. The plan was to try and start him on a stimulant in hopes that it would enable us to increase the Tenex without causing sleep. The stimulant of choice was Ritalin. 

We tried the Ritalin out on Saturday and Sunday, and it was HORRIBLE. It made Josiah manically hyper for about two hours, and then he crashed the rest of the day. Extreme Crashing! We tried one more microscopic dose on Tuesday after consulting with the doctor, and, while not nearly as severe, the side affects were not positive. Those few days of medication trail have already affected Josiah's sleep. We totally understand that it takes some trial and error before figuring out the right medication combination, but Josiah's sleep is of paramount importance to us right now. We have decided with the guidance of the doctors to ween him off of the Zoloft and Tenex. He will continue to take the Risperidone and Doxepin to help him sleep. We will then reevaluate where Josiah is and make decisions concerning medication at our next visit with the CIDD. 

Overall, I came away from our appointment with a tremendous sense of relief. I was comforted in knowing that we have done all we can up to this point for our boy, and that it is ok for us to live in the reality of what Autism means for Josiah. Does this mean we are hopeless? Never! Our God holds all the power in heaven and earth, and He can choose to bring about development in Josiah whenever and if ever He chooses. BUT.... God has chosen our sweet boy to live with this disorder, and He has blessed us and entrusted us with his care. Our job is to love Josiah, and to remain faithful. God has a perfect plan for our sweet boy. I can't imagine facing all of this without Jesus. What a good and gracious God we serve!          


  1. Christy, I enjoy reading your blog, and I so admire your strength and faith!! You have a beautiful family!

  2. Parents with kids with disabilities constantly wonder if they are doing everything they can, don't you think. Then to hear the doctor confirm that you ARE doing what's right for your child can be relieving. How do you deal with those questions in your head and heart, friend? i've been having them more and more lately as we have to make decisions for our children.

    1. Cristy I struggle with this daily. One minute I feel confident about our efforts and the decisions we have made, and the next minute doubt creeps in. We will go to doctors appointments confident in what we will and won't do, and, yet, we come away with a different plan. This always leaves me feeling like a poor advocate for the boys. GUILT! As much as I know fear and guilt are not pleasing to God, it is a struggle to fight back these emotions. Like you, I know that God sovereignly planned the challenges He has given our boys, and I do find comfort in knowing that part of His plan includes us as caregiver and advocate. All we can do is act in our child's best interest and from the deepest place of love, care, and compassion. I love you friend, and am praying for you!

  3. Haven thanks so much for reading our blog and commenting! We pray God uses it to encourage others!


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