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Hi, I'm convinced my son's issues are related to phenols/sulfates and am considering trying No-Phenol. There has been some chatter about this here and would love any and all feedback from those of you who have tried it. Thanks! Donna

Carolyn, How is it coming with the No-Phenol? Thanks! Donna

Goodness, this forum is slow lately.

My son had an EEG yesterday for the first time. It was a sleep deprived eeg, so he only had 4 hours of sleep. He had to lay there for 40 minutes in the dark with 25 leads on his head with his eyes closed. You would think any 10 year old with 4 hours of sleep would have fallen asleep. Not Nathan. He was just about out of skin by the time he was done. He kept tremoring almost for almost an hour. Like jolts were going through his body. I immediately took him to a park & he ran and played enough to calm him a bit. It's almost like his brain is so stressed that it is making it worse. We don't have results yet. Does this sound familiar to any of you? Donna

It won't let me search "gum" b/c it's too short. What that link for gum without dyes & junk? I can't remember the name. Thanks!

Everyone must sleeping lately.

So we are finally getting a referral to a allergist for some allergy testing. It will take weeks though before we can even set the appointment. Medicaid......thankful to have it right now, but arrgggh. My son is obviously triggered by diet and I am looking forward to some help that way. We are also pursuing evaluation for ADD. I am hoping to learn some techniques for all of us to cope with that aspect better. I just feel so guilty b/c with the ADD he can hardly function and after a while it makes me angry. That's so mature of me. He can't help it & I get mad. Great. I don't know who needs help more, me or him. I guess I need to go over to the ADD board. Has anyone had experience with the FailSafe diet over the Feingold? Some one recomended it & I am just starting to check it out. Thanks. This is just so damn hard.

What happened? Anyone know?

Heather, Please, tell me who. Please!!

Well that was a big fat waste of time. He had never heard of "any condition that was influenced or made worse at all by diet". He has no clue as to why diet triggers his episodes. He'd never heard of the Feingold diet. He told me if I wanted allergy testing done we would have to have my primary order them b/c he would have no idea what to ask for as he had no experience with diet. He said if I wanted to pursue the diet aspect affecting him that I would have to "do some research on the net". He wants and eeg & if that's normal, then we will medicate. Over my fat heiny. He is obviously triggered by diet & can start to have an episode with in minutes of eating something he shouldn't........but no, let's not pursue that peice to the puzzle. I'm so annoyed right now. I've been to two naturopaths, a chiro, a primary care doc & now a neurolgist. They all watch the video & say , wow, somethings wrong but have no clue. He did say today that it may be tourettes, but it's too soon to dx.

Good point. Now I feel like a dork. My MD is sending him to a ped. neurologist and I really am not exactly sure what they will do. How would a ped. neurologist help in this case. Do they normally diagnose this spectrum disorders? I really want to go the allergist, but he says no, do the neurolgist first.

See, that's what I am wondering. Will he actually do anything other than diagnose & recommend meds? Does he do any testing for anything usefull etc? A diagnosis would be great, but I think I can get that at the local doc too.

We are on medicaid this year so our referrals to a ped. neur. are limited. I can take Nathan to one locally. Only one option here. Or I can drive 2 hours away to Childrens Hospital in Denver to doc's that I know will have everything at their disposal. Gas prices, well, that makes me pause going to Denver. My question is this. What can I expect from a ped. neurologist visit. What kind of testing will they do? Could it be productive? Would it be worth it to go farther away to a possibly better facility, or should I just go to the local one? What can I expect from a visit to this type of doc? My primary care does not want to do persue any allergy testing until the ped. neurologist has been seen. I'm just not sure exactly what a ped. neurologist will do. Thanks, Donna

Hi Tami, Yes, he is symptom free with the exception of his normal ADD symptoms. Thanks for the tip about the test. I'll check it out.

His triggers are definitely food related. He is fine as long has he stays on a strict simple single ingredient diet. He's still no sugar of any kind too. If I can't spell or pronounce it, he doesn't get it. No dyes, preservatives or sugar basically. We got the feingold, but haven't started full force yet. Last week peaches & pistachios set him off with in 15 minutes for a few hours, but I'm not sure why. But they were new foods he had not had, so I know it was it. Our food diary has been very helpful & he has become so intune with his body one bite will tell him if he should have it or not. He says he can "feel" if shouldn't eat it. I haven't started any new supplements. I would love to be armed with some testing suggestions next time I go. Thanks.

We finallly made it to the MD and he agreed there was something wrong, but had no clue or recomendations other than to go to a pediatric neurologist. He didn't recomend allergy testing, even though his episodes are CLEARLY triggered by diet. Nathan is 10 yo with no diagnosis & symptoms lasting two months now. Here's a post I started about his symptoms etc. Can anyone please get me pointed in the right direction. I would like to be armed with a list of tests/testing that I would like done next time I go. I would think allergy testing would be vital. What else? What can I expect from a neurologist? Thanks for any suggestions. Donna

Thanks Cheri, I'll check out the link. So far I've been to two ND's and one MD, plus one chiro that specializes in allergies. Nada so far. I really would feel better to rule out anything physiological causing this, but I can't imagine there is. Thanks again. Donna ETA: I've checked out the link and there is nothing near me. I'll keep looking though.

We finally made it to the MD today & he had no clue. We will get a referral to a pediatric neurologist, but that may take up to 3 freaking weeks. Arrgghhh. My poor man. He's doing well today for the first time in days, but he's exhausted from all the stress his body has been under. I am just so sad and don't understand what is going on. Some parts of the puzzle are fitting together, but we are long way from understanding.

Carolyn, I am sure none of this is sneaking in as I am cooking everything, I mean everything from scratch. Straight spices only. No soy sauce, no etc. Meat, potatoes, noodles, rice, frozen veggies, homemade bread. That about sums it up right now. Thanks for the tip about the free glutamates, I didn't know that. It is just going to take more time, for both of us. Thanks again! Donna

Hi Carolyn, Your threads have been so helpful. You have amazed me with all you have put together. Nathan is not eating anything I have not made myself from scratch. Except the hot dog. So I know he is not getting any of those things. Last night by the time he got home his lip was bloody from biting it in an effort to sit still. They had stopped & bought more epsom salts so we immediately put him in the bath & like ususal, that immediately calmed him. Could just a small amt of sugar have triggered all this? Coconut does not seem to be a trigger. He will swallow it by the spoon ful with no problems. It just drives me nuts when I can't understand the why. Thanks for you help. Donna

I'm giving Udo's. It's flax, sunflower, sesame, coconut etc. Do you think that could still be a problem. Maybe I should take him off everything and start from scratch.

Oh, yes, we homeschool.

Faith, I agree. Our first MD appt was supposed to be today, but our car broke down. We will perservere of course, but dang, I'm a bit at a loss. Thanks for the jab of reality.

Thanks Liane, Good points.... My husband just called. They are on the way home from something they went to. Nathan wouldn't get out of the car b/c it was so bad and he's sitting there biting his lip in a superhuman effort to be still & control it.

Oh gosh, I"m clinging to the edge of sanity with the tips of my fingers. Please someone give me something to cling to.