New Member. 8yr old receiving LDA....Diagnosed on the autism spectrum at age 2. Really an autoimmune disease (NIDS-NeuroImmune Dysfunction) - Mothering Forums

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#1 of 2 Old 04-10-2012, 07:30 PM - Thread Starter
 
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So, my guy is complicated....i.e. chronic autoimmune condition since 13 months. (I think we can guess why ;( ).

Anyway, I have a consult with Dr. Schrader in three weeks with my questions, because my LDA doc is great here in IL, but isn't able to answer a lot of the issues we are having with LDA and his reaction, and is not his neuroimmune doc prescribing the meds.  Sounds like most of your kids on this thread just have allergies and some minor sensory stuff, and haven't been down the road I have (over 15 specialists from 7 states and 10 or so labels ranging from PANDAS to ADHD to Autism to autoimmune encephalopathy).  

 

My guy seems to be allergic to everything.  In reality, his overactive immune system just fires off at everything.  I didn't know how bad he was with chemicals until after his first LDA shot, his arm swelled up (by that shot) and his ears turned bright red and were on fire.

 

Anyway, my questions are:

He is having a very hard time with the critical three days.  He is allergic to potatoes so those are out.  The first shot, he did fine with fish.  Second round (given today), he was tortured and full of anxiety (he already has anxiety with aggression issues so we don't need any more).  What happens if we cheat on food during the critical days?  Tonight I caved (he was starving himself) and made him tapioca/rice flour pancakes.  Rice is iffy with him, so I felt very guilty.

 

Next, he has to be on an antiviral (he has an hhv6 titer 1245 times that of a normal kiddo).  I can't find anything about antivirals and if they are safe, inconclusive, or cancel the shot.  I skipped today (shot day), but really need to put him back on it tomorrow if I can...yet I would hate to cancel a shot after all we went through....so, I would really just like to know about antivirals.  I tried to get a yes or no from Schrader's staff today with no luck.


Last, after the first LDA shot, around week 4 we tested problem foods and let him sort of eat whatever since we were on vacation (he has been GFCFSF since he was 2).  Instead of acting 'autistic like' when consuming these foods, he said how sick he felt.  Acted like a typical child, but since that day, now he says at least 6 times a day every day how sick he is....and 'why do I have to be so sick'....'i am sicker than i ever thought i could be'...'I am going to be sick forever'.  He says it is deep in his body-all over....not one specific place.  Now, mind you we hadn't started antiviral at that point.  The only thing we did was LDA.  I am wondering if this is the effect of unmasking.  Now, he actually feels it.

 

Even though he is so miserable, does this sound like LDA is working?  Thanks to anyone who has some insight.

 

Peace,

Kersten

 

www.thefarrellfoundation.org

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#2 of 2 Old 04-19-2012, 07:17 PM
 
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I don't have any advice about the allergy thing, but wanted to pass along some information I just learned. I was actually just cruising this section looking for something else when your post's title caught my eye. There's a genetic mutation called MTHFR that I've been learning about because I believe our family is a carrier. What's very interesting is 98% of the people who are Autistic also have this gene. There's been some recent treatment with Methyl B12, and also sometimes with Folate and TMG added with incredible results. Google it and you'll find tons of information about Methyl B12 and autism. 

 

 

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