We had a phone appointment to go over the test results, and unfortunately his white blood cell count is down again. So his immune system is still weak even with all of our efforts to repair it. He was also on the lower end of normal in calcium. (Mainly because I stopped giving him the full dose, I was giving more like a quarter of the dose and sometimes none, to make sure he wasn't getting too much and that he had enough vitamin K2 to properly absorb it) So we have to wait yet AGAIN to start chelation. The doc wants him to do 3 full weeks on double the calcium we have been giving (I just moved it back to the full daily dose) and then start. This was disappointing to us because holding up chelation, holds up HBOT as you have to start one, give it some time to see if you are getting results before starting something new.
We are still using Enhansa, but it is pretty potent, so when we try to move up the dosage to get to the recommended daily dose he becomes lethargic and a bit grouchy. We are very slowly working our way to the full dosage and hope that something good will come from it as it has the potential to do so much. The doctor mentioned that if we do not start seeing results from Enhansa that the next step would be LDN (Low-dose Naltrexone) which is proving to be great for boosting the immune system. Exactly what our little guy needs.
Because I was upset at waiting on chelation I decided to do another treatment that I have been considering - The vitamin A protocol. The protocol is only 2 days so that is easy enough - but it is a high dose so kind of scary. It is also something that you may not see results with for a couple of months, so another waiting game. Basically you give 400,000 iu's of vitamin A for 2 days in a row. It went well, he initially had an increase in babbling and was in a generally happy mood with more energy than usual. He had a little rash on his face on day 3 (day after protocol) but today is day 4 and it is already clearing. Nothing else to report on this yet. We did it for his visual stimming. Visual stims can be a sign of measles in the gut, since doing a scope is the way to test this, most parents just do the protocol without the testing. Some kids have very dramatic results.
I forgot to mention in my last update that in December Dylan had to have another set of ear tubes, so he was put under again. Not good for a little guy that is still struggling to recover from all of his previous surgeries.
We are still looking for good therapists and so far I have had no luck. The speech girl that comes to your house is booked, so he's on a list. Although we liked her, and she does take the scholarship, she failed to mention until our intake appt. that she expects payment and then signs the check she receives over to us when the state pays her, which is quarterly.... If we had that in our budget we wouldn't need the scholarship! Ugh!! Another issue to work through, but we will somehow figure it all out.