Thursday, July 20, 2017

Clinical Trial

This summer is flying by! I have so much going on that I feel like my head is spinning.  Jacob's progress has been interesting lately.  He seems to be making more connections with us and with his brother and cousins.  When they are playing, he tries to insert himself in the middle of them sometimes.  Instead of just watching from far away, it seems like he wants to be a part of the guys, which has been pretty cool.  On the other hand, Jacob's eye tics/stimming have come back full force.  We have been tracking it for the clinic to see how often he does it.  During meal time alone he will do it 160+ times.  I collected several videos to show his pediatrician and she seemed pretty confident that it still wasn't seizures.  I wish I knew why he had such a sudden onset of the tics and why he is doing it so often. Hopefully, the clinic can address it soon.

Additionally, I had a meeting with Jacob's BCBAs regarding alternative communication devices for him.  These are apps for the ipad that help non-verbal children to communicate through clicking on text and pictures and then the app vocalizes the sentences for them.  Jacob is very smart and has proven through his work at the clinic that he knows and understands thousands of words. However, he NEVER uses speech for more than basic functional communication of his wants and needs.  In my gut, I feel like there is more in there he is trying to get out, but just can't or won't.  However, introducing communication devices isn't as easy as I thought.  

The therapists explained that Jacob has extreme anxiety and because of that he shuts down completely in certain situations, rooms, or with certain people.  They said that children with autism typically have higher anxiety, but Jacob's is something totally different.  His way to control stressful situations is to stop talking completely.  He won't even make sounds.  That makes him feel good, so it reinforces him to continue his mutism.  Today, we went to the medical center for his clinical trial and the pediatric psychiatrist agreed that it sounds like Jacob has selective mutism, but that it would be extremely difficult to find a doctor that understands both selective mutism and autism because both are very complex conditions.  If you know a doctor that can help, please email me.  I intend to start researching tomorrow but wanted to reach out to the community in case anyone else has experience.  Typical treatment is therapy, but that obviously wouldn't work for Jacob at this point.  Our conclusion from the meeting on a communication device is to try simply typing out words with Jacob in a non-stressful environment.  They were afraid that if Jacob learns that he can type instead of speak he may never speak because of his selective mutism. The idea is to make him say the words out loud if he types anything that he wants and not let him get away with only typing. Oh, how I wish I had all the answers.  It seems like the older he gets the more complicated this all is. 

About 15 weeks ago we began a clinical trial with Texas Children's Hospital to see if this new digestive enzyme would be helpful for Jacob.  It helps to breakdown proteins and for kids.  Jacob has never had digestive issues, but they are in their 3rd round of clinical trials and needed kids with and without digestive issues in the study.  Most children with autism have a hard time breaking down proteins which is why many are on special diets. The first 14 weeks were blind so we won't know if he was on the actual enzyme or the placebo.  Now, he is enrolled in the open label (he is on the enzyme for sure).  I have to collect stool samples within a 24-hour specific window every 2 weeks and organize it into tubes and pouches and packets like I am a true scientist and take it and him to the med center for a 1.5-hour exam.  If Jacob ever doubts my love I will surely remind him of this. haha We will be in the open label study for up to 3 years or until it's available to the public.  I haven't seen any major changes, but I am hopeful that it is helping his digestion. 

Last but not least, I spoke to someone from Autism Service Dogs of America today.  There is no update on our specific dog or the specific date, but please continue praying.  We are hoping for October.  I did find out that dogs naturally reduce stress and their service dogs are trained to help even more through deep pressure and comfort.  A woman here in town has a child with autism and one of their service dogs and told me that she couldn't even put into words how much the dog has helped, but it has been life changing.  I asked her if it has helped a lot with anxiety and she said that is the main thing it helps with.  I cannot wait for Jacob to experience some comfort like that.  I think it's amazing that when we applied for the program we were mostly wanting a service dog to keep Jacob safe from elopement (still an issue), but now we will also have an added help for his anxiety.  Isn't it awesome how God provided something for us that we didn't even know we would need?  

God's provision in our lives completely blows my mind.  Completely.  

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