Re: Re: carmitine and siezures

January 4, 2012

can also be low cal. there are studies in dr Shaws book talking about this. also migrains make me want to do this

From: T Lynn

Sent: Friday, December 30, 2011 11:42 AM

Subject: Re: Re: carmitine and siezures

Hmmmm... have you considered Lyme? Pressing on eyeballs can be an indication for oxalates, but not always. Sometimes, it's simply eye pain/pressure. Air hunger, night waking could all indicate Lyme. The flapping and giggling could be bacterial.

Check out this nifty little symptoms chart. Here it describes pulsing feelings in the throat, pain and pressure of the eye, sleep disturbances etc. etc.

http://www.lyme-symptoms.com/LymeCoinfectionChart.html

Your son will not drink water? How about colorless cherry flavored electrolyte water?

*During our GFCF experience, I've found that my younger son does much better with small amouns of dairy. We keep it organic, in small amounts, and generally limit it to kefir and yogurt. (Once in a blue moon, cheese). It's definitely not something he can have everyday. His sinuses become stuffy and his exzema flairs. My guess would be he needs the calcium because of his refusal to eat vegetables (our biggest hurdle. And on my list of goals for 2012).

-Tammy

To: "mb12valtrex " <mb12valtrex > Sent: Friday, December 30, 2011 10:50 AMSubject: Re: carmitine and siezures

Alyssa,I read info on the folinic acid or folate issue and asked out DAN to test him if possible, she said she would just prefer to start him on the leucovarin. So, while i was waiting for the RX, I started him on folinic acid at high doses, and kept increasing so I would gear him up for the leucovarin. I was seeing nice results with attention and some energy, however 3 days into the leucovarjn , I lost him into his world again, stopped the RX, he came back. So, I think it was too high and now afraid to start any of it again. I will read all of your post and think of more questions, but I just feel so damned if you do/damned if you don't! I feel like we are running out of foods and drink choices. Feel like I can no longer tell what supplements work or not.He has been GFCF for 2 years, strict Spectrum Protocol diet for about 6 months, then this Thanksgiving, it became evident he has phenols and oxalate issues, so, I have removed the foods. Except for rice milk, I felt it was the lesser of 2 evils with regards to oxalates. He refuses coconut milk. I even tried to give him cow's milk- gasp- because I feared dehydration. He refused that as well. However, he did drink some and I saw no negative reaction to it. I have given him a spoonful of greek yogurt each day this last week, no issues with that either. So, wondering, if dairy is not an issue for him and I can let him small amounts?He has come a long way, last year, I could not even get off the floor, he zero energy.My current issues are: what to give him to drink minus diluted cherry juice with coconut water?What are yeast symptoms? He did horrible on Diflucan, now he is going to get amphotericin B, which i am scared to even give to him.He swallows so hard and constantly, pushing tons of air in his belly? Sticks his whole hand down his throat- though that has improved some with removal of sweet potatoes-odd?He is waking up at very early hours-way before the sun.He giggles and runs around flapping- could he have Angelmans as well?He pushes his thumbs in his eyes?And since starting no phenols, oxalates, salicylates diet, his urine stinks so bad and his poop is like sludge? What am I looking for with milk issues?This consumes me!BethSent from my iPad

January 5, 2012

>>My guess would be he needs the calcium because of his refusal to eat

vegetables (our >>biggest hurdle. And on my list of goals for 2012).

Haha! Ethan has this in a BIG way. This kid pukes when he even looks

at vegetables on someone else's plate from across the room. He

belches and gags when he's even in the same room as vegetables. He

doesn't have any particular sensitivity to vegetables, as he's just

fine to eat them when they're hidden. But if he even sees it, he goes

through this whole dramatic gagging and belching display (and he's 3

and doesn't know to fake it -- but he gags and belches with such

intensity that his eyes water up and runs out of the room gagging).

January 5, 2012

That is EXACTLY how used to get. That disappeared right around the same time that his pica disappeared when we started supplementing zinc. He can finally tolerate the sight and smell of veggies and can sit next to us now while WE eat them - he'll even endeavor every once in a blue moon toTRY them (this always results in him spitting them out. but hey, atleast he tries). He still can't handle the sight of baby food, though - he will toss his cookies every single time. He's disgusted by babies, in general....won't stay in the same room as them. He thinks they are the most vial creatures on the planet....and if you've ever met , you'd see the humor in this because he is the grossest kid you will ever meet.

lol. *The light at the end of the tunnel is: I have a grown cousin. He had many problems as a child: (tourettes, OCD, adhd, rage). He was the same way. Vegetable always had to be cooked first thing in the morning when he was at school so the smell would be gone from the house by the time he returned home at the end of the day. I've mentioned him here before: he's now grown, his symptoms are gone. He's graduated from college, has a great job, is happy and healthy and eats his veggies!! -Tammy To: mb12valtrex Sent: Thursday, January 5, 2012 7:00 AM Subject: Re: Re: carmitine and siezures

>>My guess would be he needs the calcium because of his refusal to eat vegetables (our >>biggest hurdle. And on my list of goals for 2012).