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Getting desperate! Rages still really bad.


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Angela, I am so sorry you and your family are going through this. It gets really difficult. Have your son been tested for Lyme and related tick diseases through Igenex? Has he had an MRI?

 

No, we haven't had tests for PANDAS or Lyme yet. I did manage to get ASO and DNase-B titers, but that's all anyone has been willing to run for us. We're definitely going to check on Lyme disease and co-infections. I tried to get Dr. I in San Antonio to run these for me, but he said no.

 

We asked the neurologist back on Sept. 3rd for an MRI, but he said no because his diagnosis was "psychiatric" issues. I wanted one because ds11 had a very hard fall on concrete (fell backwards off a step stool in our garage at age 8), so I was wondering about post-concussion syndrome since he had a very small outer lump afterward.

 

I think half the battle is finding a good doctor. Can't do as much without one. Thanks again to all for your support and suggestions. I'll post updates as they happen. Luckily, today was supposed to be a good day, and it was. No rages! Preparing for tomorrow....

 

Angela (SearchingMom)

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I wanted to chime in that any type of calcium supplement will cause my youngest son to rage. It was one of the first triggers I found. He also reacts to many other things such dyes, sugars, HFCS, MSG, but calcium is the worst. I am on a lot of the autism groups, and there is a small subset of kids that react badly to calcium. I started him on the GFCF diet when he was 1, and I desperately tried every type of calcium supp on the market since he wasn't eating any dairy, but they all sent him bezerk. Finally I gave up, and he gets no supplemental calcium. But he still tests normal to high on blood tests for calcium, so whatever he gets through veggies stays with him I guess.

 

And just yesterday he had a short bout of aggression. He hadn't had any aggression at all in months since being on long-term antibiotics. I double checked his muffin (he now eats gluten no problem), and sure enough, it had 10% of the RDA for calcium added to it! Just that small amount sent him charging at me.

 

 

 

Angela, I am so sorry you and your family are going through this. It gets really difficult. Have your son been tested for Lyme and related tick diseases through Igenex? Has he had an MRI?

 

No, we haven't had tests for PANDAS or Lyme yet. I did manage to get ASO and DNase-B titers, but that's all anyone has been willing to run for us. We're definitely going to check on Lyme disease and co-infections. I tried to get Dr. I in San Antonio to run these for me, but he said no.

 

We asked the neurologist back on Sept. 3rd for an MRI, but he said no because his diagnosis was "psychiatric" issues. I wanted one because ds11 had a very hard fall on concrete (fell backwards off a step stool in our garage at age 8), so I was wondering about post-concussion syndrome since he had a very small outer lump afterward.

 

I think half the battle is finding a good doctor. Can't do as much without one. Thanks again to all for your support and suggestions. I'll post updates as they happen. Luckily, today was supposed to be a good day, and it was. No rages! Preparing for tomorrow....

 

Angela (SearchingMom)

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