Updated: Apr 12, 2021
Yesterday, March 1st we drove to Eugene for an appointment at the Children Research Development Center CDRC with Dr. Amelia Roth, MD.
The appointment overall was POSITIVE.
We received some new diagnosis. Changed some diagnosis. Made some significant medication changes. We will be working much closer with the CDRC team. I was able to express some MAJOR concerns; and they are concerns the team shares, also.
Let's walk through the diagnosis list. Attention Deficit Hyperactivity Disorder ADHD (New, but not unexpected replaces his former diagnosis of Hyperkinesis,) Childhood Anxiety, Obsessive Compulsive Disorder OCD, Sensory Modulation Dysfunction SMD, Articulation Disorder, Disordered Sleep, Ligamentous Laxity and Pica (New, but not unexpected.)
ADHD, while we have been treating Niklaus as a child with ADHD for a little over 2 years it is very reassuring to know that he will have accommodations while in Elementary School. It makes it much easier for me to feel comfortable sending him to mainstream school when that happens. I should probably make a blog about the books I have read about ADHD and have helped our family. Childhood Anxiety, this does not define and make life hard to navigate for Niklaus like his ADHD does. For the most part his anxiety just causes him some uneasiness and confidence issues. His anxiety kicks in the worst in social situations and when he is not in a comfortable environment, his house. The drive to Eugene and being away from home for 10 hours made him very uneasy and anxious. I do not know how many times I heard, "Can
OCD, couple this with ADHD and you have a child in turmoil, Niklaus' OCD causes him to feel like perfection is necessary in all aspects of life; while his ADHD makes it impossible for him to have the ability to entertain the perfection his OCD insists. I can only imagine how his poor brain and body are in a constant conflict with each other and the unrest that must cause him. Where we see the most OCD is with food and water consumption. He was at one point drinking over 100 ounces of water a day and he is constantly trying to get a granola bar or apple.
SMD, this basically is the that Niklaus has difficulty regulating sensory input. In general Niklaus seeks sensory input until he is so overstimulated that he shuts down. He does have quite a few sensory avoidances, mostly related to food and textures. His sensory seeking and avoiding is almost as life altering as his ADHD. It controls many of the things he does and how he reacts throughout the day. He will be returning to Occupational Therapy this week and working on sensory regulation.
Articulation Disorder, while Niklaus started talking earlier than 6 months old his articulation has always been off. Now as a 5 year old his articulation and just forming words takes a lot of concentration, practice and work. She was also concerned about how hard he had to work just to speak, as far as making his mouth formations, she called it Verbal Dyspraxia. While he was not diagnosed with this she is concerned that he may have it, and this could be a huge part of his articulation issues. He has another Speech evaluation on Tuesday of next week.
Disordered Sleep, I think this is more related to his ADHD and not having that managed and to a point where he has control. We have figured out through documentation that sleep is very hard for Niklaus, he cannot slow down his body or his brain enough to fall asleep on his own. This has been an issue since he was very young like under 6 months old. Niklaus did not sleep through the night until he was over 4 closer to 5. And even with sleeping through the night he is still only sleeping in 6 hours stretches most of the time, a very restless 6 hour stretch. He talks in his sleep, walks in his sleep and shifts and moves so much in his sleep.
Ligamentous Laxity, basically he has loose ligaments that lead to extra bendy under supporter joints. His ankles and knees are effected the most. He is at a higher risk for dislocated joints and joint stress. He also has noted hypotonia. Coupled with loose ligaments his joints are not properly supported and he suffers from muscle weakness and fatigue. He could not successful walk around the block until last Summer.
Pica, Pica is a disorder that relates to the compulsive eating of non nutritional items. We have struggled with this since Niklaus was very young. He used to eat handfuls of dirt and pebbles or constantly mouthing of thing. This also goes hand in hand with his OCD. Because of his Pica he feels the need to eat things, because of his OCD he has to touch everything with his mouth. While we have learned to manage this it is a struggle when in new environments.
Dr. Roth is concerned about how extreme Niklaus' obsessions and compulsions have become, they are almost life controlling and all consuming. She mentioned Prader-Willi Syndrome, however it is very unlikely that this is the cause of Niklaus' issues, she is looking into options however because they are very extreme. I am very grateful for Dr. Roth and the whole CDRC team. They really work hard for the children they see.