Follow up from Texas.

We had our follow up appointment with his doctor in Texas the other day. I was so thrilled to share everything that had changed in the last 3 months. As I went through the list of positive changes, improvements and growth we saw, the doctor’s eyes got wider and wider. He said, “Wow, you have made my day, I love hearing these amazing success stories”. This is not uncommon with kiddos going on this regimen. It’s a combination of the anti-inflammatory and the peptide that is working so well. He did say that not everyone sees this rapid of results as it takes up to 9 months to see the full benefits from the Dihexa peptide but seeing as how many improvements we have seen in Jonah, he suspects his peak for the Dihexa will be closer to 6 months. 

To answer a few questions about this regimen:

1.       Improvements have been shown to be permanent. This peptide helps the brain create new synapses (brain connections) and once those are created, they will not go away once the medicine is stopped. 

2.      He will stay on the medicine for the foreseeable future. It is possible he can eventually not need it but that will be determined on his growth and development in the years to come.

3.      We will adjust dosage as he gains weight and ages. Currently he is on the lowest possible dosage. We have room to increase dosage as well as frequency. Currently he takes this medicine every 3 days. 

4.      We have been told to expect plateaus in his progress after peak. He will likely make gains then plateau for a bit then we will see another rise in gains and then plateau again, and this will repeat and is common. 

In regard to a previous post about the difficulties we were experiencing with the Organic Acid Test (OAT Test) sample, I am pleased to share that after months of trying we finally got a good urine collection, and the sample was accepted by the lab this time. We are anxiously awaiting the full report from that lab. This test measures 76 organic acids in urine, providing insights into metabolic processes, nutrient deficiencies, gut health, and potential toxin exposure. It helps identify metabolic imbalances and can indicate issues like dysbiosis or nutrient deficiencies. 

Jonah has done better than expected with his AFO leg braces and we have worked our way up to half day of wear. That was a prayer request answered. Thank you. 

This week’s progress came in the form of communication and sensory accomplishments. 

Side note: (I am also so humbled that I am able to write progress he has made on a weekly basis, I am so thrilled how rapidly he has started to improve after spending most of his life not making any of these gains)

So, after 8 months of speech therapy we had our first independent usage of his AAC (communication device). He pressed the “more” button all on his own, intentionally and functionally to request more from me!

His speech therapist also got 2 word approximations this week. What that means is that while he didn’t clearly say the word it was an intentional attempt to repeat the word, and its sound had similarity to the properly pronounced word. Example, he said “Go, go, go” but it was spoken with more of a “Doh doh doh”. The other word he said was “more” but in the form of mostly the “oor” sound. 

The next was playing with PlayDoh! He actually squeezed and pulled and pressed the playdoh! This is a big sensory achievement because he has never grasped anything with his whole hand. He has a major aversion to anything touching the palms of his hands so if he can’t touch it or pick it up with his fingertips he wouldn’t even try. This is also the reason he compulsively throws things. Anything he picks up he throws it immediately. Basically, it’s in an effort to get it out of his hand. The only thing he has consistently held with his whole hand is a bottle, which he doesn’t sip, he chugs it till it’s empty then proceeds to throw the bottle. He holds it just long enough to drink. There is no concept of sipping on it and setting it down to come back for it later. This is also why he gets multiple sippy cups a day but with only enough in them for one drink or so at a time. He has a history of drinking too much water (to a dangerous level) and we had to find a solution to that which was not giving him a full sippy or he will chug it and do that 20x a day, especially when he was using drinking water as a soothing mechanism. Thankfully that has improved some. I still don’t leave the house without 3 ready to go sippy cups and a bigger backup refill bottle.

Prayer requests:

-          Speech as always. Full conversational speech!

-          Although this isn’t on our radar right now as a skill to even begin working on, I’d like to start praying for it. Potty training. Many profoundly autistic kiddos are very late in potty training (upwards of teenage years) or are unable to ever achieve it. We are faithful that he WILL be able to be fully trained!

-          Increase in safe foods. Currently he eats the same 5 things every single day. I would love to diversify his diet to get in more nutrients.  

-          Full independent walking. That he will one day walk away from his walker and not need it!

Thank you for all your support and keeping all these prayers requests going up! It’s working and you are all a huge part of that!

Much gratitude,

The Mabes