abbe

Carolyn, I was wondering how Dan was doing. Do you use enzymes with him??? abbe

Mary, Have you tried the aceytl l carnitine. Nick had a really bad throat clearing tic that I swear it took away. this was before topamax. abbe

CP, Yes Sea Isle is so close to Ocean City. I thought all of the boardwalk food would be a problem but it really wasn't. Hope all is well for you also... abbe

Hi everyone, We were down the shore for a week (ocean city NJ) I am beggining to be able to travel and not panic that things will be bad when we get there. for the greater part Nicholas tics have been very, very mild to non existent. He is 8 years old (just in June) normal weight 50 some pounds. He is on 15 mg. of the topamax. He responded very well to the Topamax. I always kept him on 15 so I could see him tic if something was a trigger. He has been off dairy and recently I have allowed him goat's milk. Prior to the shore he has been good even with eating foods at summer day camp. The Saturday that we left his neck tic acted up pretty bad. he ate camp pizza on Friday. Played video games Satuday morning. Not sure if that was it or not. He did it another week and was able to handle it. Nicholas takes a baby asprin a day for a prior injury. He had an accident when he was 5 and tore his left artery in the back of his neck and had 3 strokes. He fully recovered from these strokes but needs to be on the asprin to keep his blood thin. We added these homeopathic mold drops to his supplements and has been doing very well on them. Lately I have been thinking the baby asprin messed up his digestive enzymes in his stomach which led to the allergies which led to the tics. This is my latest "theory" to go after. When Nicholas is at his dads house down the shore (newer house) mine is 15 years old. He usually has no tics what so ever. Something about the outside environment is good for him. The house is on the bay ?? My x does not watch his diet as well although he never gives hi what he isn't suppose to as best as he can. In other words he would give him cheez its and then say oh that only has alittle bit of dairy. Still Nicky is tic free there. I used to think my just didn't notice them as much so yesterday me and my new husband went for the day and hung out there. (we all get along!!!!) Nicky drank soda and ate while I was there and he was fine. I do not plan on taking him off of the Topamax until I can figure out how to get him tic free all the time for good. I wanted to mention on thing my ex stopped using soy yogurt for Nicks supplements and started using apple sauce. I may stop the soy yogurt when he comes home for a week and see. I only used it for his supps. abbe

Hello, Aceytl l carnitine took my sons throat clearing tic away abbe

[quote name= Faith, I never allergy tested Nick for environmental things. but when I started to go to this new doctor I was "into" the yeast issue and he gave me these drops called FNG. I think for the yeast but for some reason Nick freaked on them tic wise even on the topamax. I doubled his dose of the topamax one day and took him off the drops and he stopped. Well I never knew what the deal was on that but it rained in New Jersey for almost a month straight and something inside of me ( probably a voice from god) said it may be mold. So when I took him back the doc muscle tested him for that brand of drops and ever since he has been on them he has been about 98% tic free . He even was off all supplements for 3 days at my x husband's house because he was sick but remained on the drops and stayed tic free. Last night after supplements he had his neck tic before bed but didn't wake up with it. So I have to ask myself was it the goat's milk, was it a supplement, was he tired, or was it the asprin, My newest voice is telling me he needs enzymes. Nick is on long term baby asprin use everyday because he had a stroke 3 years age (that is another story for another time) he fully recovered but they want to keep his blood thin. Well I am sort of convinced that the asprin may have caused this whole mess . Asprin equals lack of enzymes in your stomach which leads to food intolerances which leads to allergies which led to tics. Sorry to ramble I am just getting excited that I can figure this mess out. abbe

Faith, Got them from my doctor called Toxic Fungi-Mold Nosode product code N18 company address on label Professional complementary health formulas P>O> Box 80085 Portland Oregan 97280 there was no phone number on bottle Is this something you want to try???

[quote Hey Wendy, It's Abbe, Nicholas mom.. I FEEL your pain. One of the things that I did with Nick was to keep him on the 15 mg of topamax until I can figure this puzzle out. It really has enabled me to see what still causes him to tic but not so badly that he or I stress. We have been tic free since the mold drops. Funny thing is one combo caused him to tic really badly and this one stopped it. If you need to vent I am here..............

[quote name='myrose' date='Jun 23 2009, 0 Yes I would without a doubt. You have nothing to lose and valuable insight to gain. abbe

[quote name='myrose' Wendy, Why did you go off claritan? Just curious. I would go back on to see if that stops it right away. If it does you will know it is allergies. Then you can decide your plan of attack. When Nick first started with this mess he had a throat clearing tick. I did the acetyl l carnitine and it never ever came back. Even when the other tics come and go it never came back. He used to get a whole capsule and now I give him one half. abbe

Deanna, I only got blood work done on Nicholas once. Most of the things I detected were from the acid urine test and through his doctor doing muscle testing. I am sorry I am sooooooooo crazy right now with my kids and I am going to Jamaica for a wek!!! yeah!!!!!!!!!!!!! But when I get back I can help you some more if you want abbe

Deanna, Sorry for the delay. I have been so crazy over here with Nicholas birthday party and his bigger brothers graduation/overnight camp etc. Ok so Nick is on 15 mg topamax. He just turned 8 and is 50 some lbs. The 15 mg is all I ever used. I continue to try and guess what Nicks root cause is and last week I felt mold might be an issue for a number of reasons. His doctor put him on homeopathic drops called Toxic fungi-mold nosode. Ever since he went on them he has been tic free again. His tics were bad 2 weeks ago when it kept raining and I gave him benedryl for two nights as an experiment and they went away. I still believe ultimately that once his body is built up enough allergies won't be a trigger. He has a low gultathione level and his doc said he tested poorly for NAC> He tested positive for cysteine and I had started that also at the same time as the drops. I also added co q 10 and a adrenal complex. I am not sure what is working but I am keeping his program like this for a while. I am going away on vacation but when I get back I am going to introduce chlorella to rid him of the mercury that his doc says he has. the adrenal complex is called miladrene. Hope this helps abbe

[ My son has a stomach tic that comes and goes like the rest of them. it bothers him the most. Epson salt baths and watch the food intake abbe

Wendy, My x husband and my new husband will never be as extreme as me on the worrying end. Sometimes I think men are hardwired not to panic about every little thing that way they can try and keep us calmer. it annoys me all the time and my husband and i fight about all the "research" I always am doing but at this point he knows that is just me and accepts it. Maybe if they were too hyper or worried that would annoy us also !! ha ha abbe

Wendy, Mary.. Just wanted to tell you I have been reading your posts and try not to worry. You have the Topamax and know that it works and that is a good thing. Like I said before I chose to put Nicholas only on th 15 mg so i could see what his triggers still were. Having him on 15 mg took the "edge" of the tics if they flared up to say the least. In other words they were very manageable. He has been tic free on the topamax and also had his tics ( not severe on it) Just this past 14 days we have gone through a tic cycle again started in his neck and went to his stomach tic. I live in new Jersey and it has rained for 2 weeks. I have always suspected a mold allergy so two nights ago I gave him a teaspoon on benedryl, his stomach tic subsided. Gave it to him again last night and it seems to be gone. So I am looking into mold/mold allergy. I guess what I am trying to say is if you need to lean on the Topamax (maybe at a lesser dose) until you have your daughter all "figured" out it is an option. One that helps me remain calm as I figure out the puzzle...... abbe

Mary, I took Nicky off dairy when his all started and he immediately stopped wetting the bed. We are almost 100 percent dairy free. I have introduced goat's milk. He seems to be able to tolerate small amounts like if it is in an ingredient in something. He had soft serve ice cream last week and it started his stomach tic back up so bad I think he won't ask for it again. Because I have him on the 15 mg of topamax I can still see if something is a trigger for him. IF IT makes you feel any better dairy IS NOT very healthy so you are doing your son a favor.... abbe

Hey, Has anyone seen flax seed oil cause tics in their child. I know there have been posts about fish oil but haven't seen any on flax. I ask because I started Nick on 1 tsp. last week and this week he has his stomach tic. The only other thing that I can pin point is he had ice cream/dairy and I don't know if he had a reaction...thx abbe

carolyn, i agree it sounds scary. my doctor said when they inject small amounts in the head they use a much much smaller amount then you would use internally or iv. He said when mercury is stuck in the brain it is harder to get out and this way helps it cross the blood brain barrier. I am not doing it at this time and maybe at any time. I have learned by now to make my own decesions. He is using laser therapy at this time for detox.... abbe

carolyn, i agree it sounds scary. my doctor said when they inject small amounts in the head they use a much much smaller amount then you would use internally or iv. He said when mercury is stuck in the brain it is harder to get out and this way helps it cross the blood brain barrier. I am not doing it at this time and maybe at any time. I have learned by now to make my own decesions. He is using laser therapy at this time for detox.... abbe

Hey, I was wondering if anyone has heard of DMPS for mercury detoxification. Nicholas doctor wants to inject it in his scalp so that it is absorbed into the brain to draw out the mercury. I am of course now researching the heck out of it. Has anyone heard of it? abbe

[quote Wendy, I used to have Nicholas on b5 from Natures sunshine because his last urine test showed he was low. But his new doctor who does accupuncture and muscle testing (kinesiology) said to stop using it that he didn't need it. He "tested" needing more b complex but not b5 alone. Interestingly enough his second urine test came back two days later and he was off the charts high on b5. Nicholas had his first sccupuncture treatment last week only two needles. He went tic free and still is with the addition of vdeo games and some junk food at a party!!!! abbe

[quote name='Caryn' date='May How do you test for it (pyroluria???) abbe

[quote name='kim' date='May 23 2009, 10: Is P5p the same as insotol??