Re: verbal apraxia?? --- Dana pls help

January 31, 2012

We're wrestling with apraxia now, too. Maia had/has global apraxia -- no ability to point at objects out of her reach, shake her head for " no " , nod her head for " yes " , and had trouble with many vowels (well, all sounds -- no vocal imitations at all). She spent the first 3 years unable to utter a single syllable and had very bad excessive drooling until age 3.5.

She's beginning to make sentences now (still needs help with some words and articulation still needs lots of work, but she has suddenly become able to sound words out when a word is presented to her on paper and she can see it). What's worked for us (this is the order we did in which it helped with apraxia):

100% soy-free dietlow oxalate dietcarnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5 mg of zinc with it each time)5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it did nothing -- 5-MTHF definitely works much better for us)

copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week to balance off the zinc we take)

carnitine for mito support (b/c we have mito problems, carnitine is required to help process things like certain amino acids -- namely, leucine for us -- to help with the production of neurotransmitters).high dose B6 for our oxalate issues (we're doing about 7 mg per pound of body weight) - b/c they were inhibiting mito functions which were inhibiting neurotransmitter production

NAC (although we've had to moderate the usage of NAC and decrease the dosage because Maia started biting more people)high dose riboflavin to correct deficiencies Vit D in the winterVit A to correct deficiency

fish oil, evening primrose, flax seed oil, coq10magnesiumRiboflavin and copper have brought the most significant changes, but these may be problems specific to us. Also, we had done carnosine before going low oxalate, but it didn't help with apraxia as much before we went low oxalate. After we were low oxalate for about 2 months and Maia dumped a whole whack of it, carnosine worked much better and that's why I listed it after LOD.

We had also done fish oil very early on and it did nothing until I gave proper mito support and until I corrected the riboflavin deficiency -- because without the proper mito supports in place (riboflavin deficiency and carnitine), the body couldn't process fats properly and the EFAs I was giving weren't being absorbed and not helping with apraxia. Magnesium also helps now but it didn't help in the beginning. Again, I think we needed more B6 and needed to correct the riboflavin deficiency so that B6 could be used.

The next things I'm trying (I like having a game plan), and I'm hoping it'll make the apraxia lift some more and we can get better articulation and better word recall -- I have a really good feeling about because of stuff I found out lately:

AKG (to bring down ammonia levels and to improve B6 absorption, which should help to make more neurotransmitters)AC chelation (Maia is likely mercury and lead toxic, also suspecting arsenic toxicity too b/c of reactions to rice -- mainly because of the riboflavin deficiency that created oxidative stress, these toxins built up from food, water and the mercury came from me having 8 amalgam fillings).

revisit tackling the biofilmHTH. Good luck with it -- I know apraxia is really really frustrating. I really hate apraxia more than I have the words to express.

February 1, 2012

Awesome post, Alberta. This is a keeper. -Tammy To: mb12valtrex Sent: Wednesday, February 1, 2012 1:06 AM Subject: Re: verbal apraxia?? --- Dana pls help

We're wrestling with apraxia now, too. Maia had/has global apraxia -- no ability to point at objects out of her reach, shake her head for "no", nod her head for "yes", and had trouble with many vowels (well, all sounds -- no vocal imitations at all). She spent the first 3 years unable to utter a single syllable and had very bad excessive drooling until age 3.5.