Hypotonia

Hi Heather,

I've asked Anita's ped to refer us for Celiac testing; we've got the results today and out of 4 markers one was off (all IgA have been normal but IgG was elevated - normal is less than 10 but Anita's was over 15)

was Ana's markers off a lot? did you have all of them abnormal or just one or two?

for us: this one marker off does not mean celiac disease dx but it is enough to refer us to the Children's Hospital GI dept and have it investigated further...

I wonder, Anita's strange reaction to soy and/or CoQ10; her IgG off.... maybe she has metabolic condition? maybe her neurotransmitters are affected by the malabsorbtion/wrong processing of something?????

while ago I asked the neuro to test Anita for neurotransmitters disfunction/deficiency b ut she said that Anita didn't present like she had that problem... yet, we hear so many times that some children do not present like "something" but they have "it"...

if you don't mind me asking... have you had Ana tested for neurotransmitters? did she had thyroid tested?

Thanks and (((((((((((((((hugs)))))))))))))))) 

sorry if my response is delayed!! I am such a slacker on the board these days!

Ana's IgA testing was not abnormal. It was also her IgG levels which were off which the drs told me was the "least reliable" test and didn't mean anything-- but after continuing to see her react to foods we did more testing with enternolab.com I recommend that if you can afford it. It tests the stool for antibody levels. Doctors aren't thrilled about the testing because it is new but I think it is great- the more info you can get the better!!

you should also consider testing for IgE reactions. We did ours with the ELISA test.

I just got a new book too, which was really great-- by Dr Bock called
"Treating Autism, ADHD, Allergies and Asthma" I really recommend it! I bought the books you recommended about What to do about your...child. I got the brain injured one and the physically superior one :) I haven't read them yet, but they look great when I just thumbed through. :O)

“Hold fast to dreams, For if dreams die, Life is a broken-winged bird that cannot fly, Hold fast to dreams, For if dreams go, Life is a barren field, Frozen with snow” ~Langston Hughes

they are beautiful:)

thank you for the replay and information:) I'll get the book, it's always good to know more!

somewhere there I think Anita's issues are metabolic and affect the way her brain works.... why would she be different on different days????? (I mean neurologicaly different - flapping, rocking????) is is something we feed her? I swear she is so, so, so much better after we put away soy and CoQ10... but still, something is still in the way...

have you ever tested Ana's thyroid?

I also intend to do that since I'm not sure Anita's was ever tested; thank goodness Anita's ped is a caring doctor and wants to help us (since neurologists don't even bother to answer the questions) 

have you ever come across this page? some interesting stuff:

http://www.fi.edu/learn/brain/index.html

how is Ana doing now? Anita's speech and language are emerging which gives me hope for better days to come:)

I'm glad you've got Doman's books; they really work for us; we do reading, balance, walking/running. hanging/swinging; flash cards; and soon we'll add back crawling for a few months (but I'll have to cut down on something else because as it is we can hardly manage with all the things we do LOL)

thanks again for all the recommendations:) we have an appointment with GI in early Dec; I plan to go prepared with the lab test info you gave me and with plenty of ????

thanks Heather:)

((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))

I'm glad you'll check out the Bock book, it is really a wealth of info. I haven't had Ana's thyroid checked but i have definately been thinking about it lately. I'd like all my kids to be checked out for endocrine issues. They have a lot of blood sugar issues which haven't really been addressed.

I bet you will find the GI doctor to not be responsive to the enternolab testing. It is a big battle waged in the celiac community. GI doctors don't accept the results of the enternolab testing because it essentially renders the GI doctors unnecessary-- I've been met by a few hostile doctors in regards to that testing, but I stand firmly behind it. Ana is doing WAY better now that we have eliminiated every trace of gluten and any other IgE positive foods. The spasticity in her legs is finally going away and she is getting back up on her feet now. She is really doing everything so much better, the only issue she has right now is that she is not walking, which considering all the emotional, cognitive and sensory issues she used to have it is AMAZING! :O)

I definately think you should push for the ELISA IgE testing. We did ours with a DAN doctor. In my experience it was the IGE foods that were causing the neurological issues like you mention with the hand flapping, etc. Have you check out the book "The Core Diet"? That is a great place to start if you are still trying to identify food reactions.

Soy is a very common trigger as are gluten and casein, along with others like corn. Ana reacts to all of those things.