I mentioned on my blog before that we were interested in starting the new therapy called Respen A. Since we were actively fighting clostridia through the use of flagyl and also using diflucan to avoid a yeast flare as a result, I decided to wait for about a week until we were all done with flagyl and diflucan was going well and behavior was stabilized. We started on the first day of winter break, 2 weeks ago yesterday. I also wanted to try this over the break so that I could monitor any possible negative reactions instead of having him go through these at school/therapy/etc.
By day 2 we noticed increased affection and attention to members of our family.
By two weeks in, each day is filled with new concepts, new awareness and new emotions it seems. My son seems to be seeing things that literally have been right in front of his face for months (if not years) for the first time. He is reminding us about his supplements and even reminding us to mark things off on his daily chart of foods/supps/etc. Now mind you, we've done supplements and charting for years and never once has he reminded us about charting or dosing. My daughter was doing something funny and my husband and I were laughing about it yesterday, he came running from another part of the house to ask "what's so funny??". This was a first. A park outing last week with 6 kids (ages 3 - 12) was a good example as well. All 6 kids were playing "pirate" and running between a grassy area and the playground. There was my son right in the middle of things, playing along the whole time (about 2 hours). He wasn't wandering off, playing by himself or off talking to himself. I am anxious to hear what his teacher thinks when he goes back to school in a week. He was a child who really did compensate well socially given his challenges but these changes are huge. We have also seen less self talk. He will regularly ride bikes on our street with neighbors but even after they have walked/ridden away he would talk to them or himself. This has really diminished since starting Respen A.
What is Respen A? It is a little brown disc. It looks a lot like a pop dot if you are a crafter or a scrapbooker. It is round and raised, not flat like a smoker's patch and soft and mushy. It comes with pieces of paper stuck to both sides that you just peel off. Then you use medical tape to keep it in place in the middle of the back (or somewhere that they cannot get to to take it off). You put it on in the morning and give 2000 mg of calcium as it can deplete calcium. Then you take it off at bath/bedtime. Very simple, very easy. It is a homeopathic remedy but still requires a prescription. The pharmacy also cannot ship to AZ so you have to have someone else in another state (like CA) where they can ship to and then that person would have to ship it to you. But, in my estimation, well worth the effort!
So there is the update after 2 weeks. I hope to have even more to update in the future. Dr. Woeller says to try this therapy for at least 6 months. So far I am very happy with it and have not seen many side effects if any. The only possible side effect is trouble falling to sleep at night. We've reintroduced melatonin with very positive results. Other than that, we've not seen any negative behaviors.