Last week my mom and me took Dylan to Barrie Galvin's Center for an evaluation to start therapy. They use the Floortime approach for OT and Speech. Keith and I decided to sign up for the 3 day workshop. We went to our first session last Wednesday evening and have our second tomorrow. I have the book Engaging Autism by Stanley Greenspan so I had the basic idea of what Floortime was, which is basically communicating with your child through their natural interests and learning to build on that. It is a good concept and seemingly easy, in fact we found that we do a lot of it naturally in our house so we have a good foundation, but building on activities and keeping the child's interest while doing so can be surprisingly difficult. You have to be very persistent and very creative. All in all I do like this approach because it just makes sense that if you work with someone's interests, they will be responsive.
We will do our 2nd round of EDTA Chelation tonight and then Dylan goes for bloodwork tomorrow. (Poor guy) HATE HATE HATE the bloodwork. I seriously have to talk to his doctor about limiting it to 3 times a year. It is just too traumatic for him (and us) and the lab is never happy to have to use our special kits. I wish that DAN! doctors could/would have their own labs, it would make a world of difference.
We met some nice people in the Workshop and are seriously considering trying a Chiropractor for Dylan. We have heard so many good things that it is worth a try. One of the girls said her son overcame his low muscle tone issues through it and that would be huge for Dylan. I also have an appt at Natures Sunshine on Thursday for him with a homeopathic doctor. She does some type of lasering for allergy removal. Along with muscle testing and other traditional remedies. I am very interested in the DPT nosode so I hope that she is familiar with it. Friday it is back to Barrie Galvin's for OT. So we are pretty busy right now.
We are still trying to figure out the HBOT issue. Basically the financial part of things, but we know we HAVE TO do it. His muscle tone in my opinion is his biggest weakness, HBOT is proven to help with that and can completely reverse it, which could totally change his life.
Chelation - Finally!
We finally got to start chelating on Tuesday. They are EDTA Suppositories, so just before bed I gave one to him. He handled it fine and so far, so good. Nothing bad to report. The schedule we are starting with is One (1) 125mg suppository every 14 days, I hope that if he does well we will be moving that up to at least 1 a week. Most kids are doing a higher dose and do them every other day, or twice a week. Not sure why he has started Dylan out so slowly but I guess it's best to be cautious.
We quit using Enhansa because when I tried to move it up to the higher dose, his eyes became very itchy and puffy. When we removed it, they were better. I might try to give it one more time to make sure it was that, but I am guessing it was. Normally, I would be upset about this, but from what I have been reading about LDN (Low Dose Naltrexone) I am kind of anxious to give it a try, so that will be our next new thing.
I am also looking into vaccine clearing with nosodes. Especially for the DPT vaccine as I suspect it played a role in things.
Other than that we are still planning on doing HBOT but need to come up with a plan financially to do it.
We quit using Enhansa because when I tried to move it up to the higher dose, his eyes became very itchy and puffy. When we removed it, they were better. I might try to give it one more time to make sure it was that, but I am guessing it was. Normally, I would be upset about this, but from what I have been reading about LDN (Low Dose Naltrexone) I am kind of anxious to give it a try, so that will be our next new thing.
I am also looking into vaccine clearing with nosodes. Especially for the DPT vaccine as I suspect it played a role in things.
Other than that we are still planning on doing HBOT but need to come up with a plan financially to do it.
Test Results and Other Stuff...
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.
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.
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