myrose

You do not have to convince me about the allergy trigger. What a difference in my daughter while on claritin. She stopped rubbing her eyes completely as I have already stated. I am so convinced now that we have an allergy issue. I had already taken steps before like her hepa filter in her room and air purifiers through out the home. Her bedding is all covered with allergen covers as well. Dust is NO where in her room and I dust the house now sometimes 3x a week! In other I have exhausted all the methods to help with her home environment but outside and at school she is wide open to everything. Can I ask about exactly what you are using and what it is specifically for?? I need something for hayfever and the nasal thing. Its called rhino something....I can't remember the name much less do I know how to spell it LOL I really do not want to stay on the claritin.....but at least we are not on Topamax any longer. Boy this is a long road but I really feel its coming together for us this time around. Allergies are I believe one of our BIGGEST triggers even more so than MSG!!!!!!!!!!! (I meant our triggers not everyones)

I think its day 9 now with no topamax. We are still tic free and going good. We started with claritin childrens tabs after topamax and she is still on it. Saturday I am stopping the claritin tabs. So hopefully if the tics come back fast after that I can pin point allergies as a trigger for her. Anyone know how to treat the nasal congestion naturally? The only thing we have not tried is the netti pot (she refuses) It seems hayfever is what gets her. She has not rubbed her eyes since starting claritin either. Can anyone help me with possibly treating the nasal issue and hayfever with a more natural remedy that works??? (she did have x-rays, but nothing was swollen) Thanks everyone

Darla, Go to Mercola.com and do a search on the drug. Dr. Mercola just put out a paper on this and how a very low dosage can help (thus less side effects) The article may be interesting/helpful for the info you are looking for.

If anyone is curious or interested here is (I think) a picture of the device fromva pilot study. Scroll down to page 17 to see it. http://www.tmjstack.com/casereport.pdf

I know every situation is different and I am in no way judging or trying to scare anyone but my sisters friends cousin died suddenly after being on this med for 2 years. I would also like to refer you to Cheri's post in regards to the findings and also sudden deaths when using those meds. Again.....I am not judging or trying to scare you but just wanted to make sure you were aware in case you are not.

Trying to find some one posting about this device and Dr. Sims for all of you. I found one tonight so far: Here is the website/link http://blogs.babycenter.com/momformation/2...-food-allergies When you get to the page scroll down until you reach the replies part and then scroll down to number 18 She says it works when its in but if he takes it out they come back immediatley. Also states that it did help with other condition. Hope this helps, I will search more tomorrow for everyone. I do hope this works for some of you (I really want it to be a miracle and help everyone)! But for now until I have more info and actual testomonies....I am kind of skeptical.....as I guess everyone is. Will you post your results CCC???? Goodluck and I wish and pray the best outcome for you.

Thanks so much for thinking of us.....so far still so good. No tics at all. She is in summer camp at her school. It's from 10am to 3pm and unfortunately she is getting into things like carmel and popcorn and candy. I tried reasoning with her and she keeps insisting she wants to eat what the other kids are having. I guess sometimes they may get sick of all the food restrictions and such. I have talked with the one in charge of the summer camp and although they also offer lunch I am sending her in with it everyday and told them she is to eat HER lunch. At least I am in control of a healthy lunch and dinner. The snacks I will let ride for now because camp is over on Friday. I just hope the new stuff she is getting into will not effect her negatively. (is that a word LOL) I am still holding my breath and we just got the script for her to start her OT therapy again so this is good. My biggest fear or maybe I should say "concern" is that we have 10 family members coming in from New York on the 6th of July and well I feel the food will be somewhat out of control during their 2 week stay. I plan to cook out alot and allow her to have the nitrate free hotdogs but I know there will a lot of eating and dining out.......I will hate this!!!!!!!!! My brothers triplets that are coming are turning 4 in September and they eat everything! Like blueberry waffles from the freezer aisle and all that YUCKY stuff. My daughter will want to eat what they want....this will be a difficult time for me/us to say the least. I wish there was NO JUNK available anywhere so then we all would not have to worry about it again!!!!!! Frustrating!!!!!!!! Thanks again for thinking of us.....I will keep updating and keep PRAYING! for us and everyone!

This may help everyone in understanding the device. It states it can help eliminate or reduce the movements but apparently doesn;t work for everyone and sometimes cannot eliminate the movement disorder completely (may reduce though) I found him in Novemeber 06 when this all started for us. http://www.freshpatents.com/Device-and-met...20080202530.php

Thanks Mary. It always feels better when you know someone else does it too! What puzzles me on the seizure thing is that her EEG was mildly abnormal showing spikes and discharge on the right side of her brain. The reading was noted as complex partial seizure activity. But she has never had a seizure and also did a 24hr video with her EEG as to possibly catch a seizure that we might have missed. (the neuro said to us that it could be a 10 second stare) My daughter has starring spells all the time! so at that time we all thought her tics were of myclonic nature and from seizures. We then repeated the EEG and the spiking was not there. The whole thing was and is still (in my mind anyhow) very confusing to me/us. They said her reading was the activity of complex partial seizures but she was not having seizures????? whole thing made no sense to us and still doesn't! Anyhow the reason we started on the topamax was because the new neuro called it in after reading the EEG. Then after he had her repeat the EEG...he said it wasn't seizures but it controlled the jerking movements/tics so we stayed on it anyhow. One neuro said this and another said that. That is why everytime I read something that is related to seziure activity I get all tensed up and wish I understood it all. So afraid someone missed something along the way. We will do another EEG but they are $5000/pc for us and we have had two already. Hoping to have another before the end of the year just so we can get the same reading twice. PS) I think I was right about it going away after she is in a deep sleep.....I have been laying in her trundle bed beside her and she has not done it at all. Thanks again for the info.....

UPDATE: 6 nights now and no topamax. Trying to keep the diet just as it is with no new changes at this time. So far so good. I have witnessed no tics at all. We are still doing the claritin daily. Want to find a more natural way for this but for now and during this time I am just not going to change anything. I have noticed that she jerks in her sleep. More so immediately after falling asleep and then after being asleep a bit it seems to stop. But....I could be wrong (maybe I am just not seeing it) I have done some reading about jerks in children while sleeping and it all keeps coming back to seizure topics????? No idea what to make or think of it right now. Its not there when she is awake so its not bothering her nor I. Just makes me curious though..... I am so happy that we have come this far and are still doing good. Not ready for the CELEBRATION inside yet but it feels good to see her med and tic free right now (thats for sure)

Hopefully someone can help. My neighbors had some company staying at their house and I got to talking about my daughters condition and natural approaches etc.... I also bragged about this board and everyone here and how blessed I was to have found this place when it all started for us. She informed that her daughter has a condition called "Morphea/Linear Scleroderma" I have done just a bit of reading on this so I do not fully understand the condition. She is into treating naturally and would love to find a board like this so she can talk to others about it (just like we all do) Does anyone know anyone who has this condition? And lastly can anyone help (possibly Cheri) in guiding her to a place like this somewhere on the net? I will look a bit now and see what I find but any help or info to pass on to her would be greatly appreciated. Thanks so much everyone

Thats a good thought on the claritin, I will stop tomorrow and ask for I am almost out of it. Today was another good day. She has been home all week (school let out last Wednesday) so there have been a few periods of her being bored and still she is doing good. No tics yet again today. I am trying so hard to make sure when I see them so I will know actually what might have caused them (food, or whatever) Maybe they were allergy induced all along and the claritin is keeping them quiet. My mind is going crazy though! One part of me is so happy to see no tics but yet the other says "alright come on out so we can get a routine together and get them under control before school starts". Cheri.....3 weeks???? BOY! Its going to be a LONG 3 weeks We are having a great summer in the meantime, we have done so many things together this week. Tomorrow she gets to pick out her new bike! She is very excited. Her old one is a bit too small and she has been saving her money so long for this bike! What she doesn't know is that Daddy and Mommy are buying the bike so she can continue to save her money. Have a good night everyone

Deanna yes I know what you mean....but when we started Topamax it was because it consumed everyone and everything here. When it got severe as it did (I do not wish this on anyone) she cried 24/7 and couldn't even go to school. Everytime she tried to write her arm kept jerking forward. This arm jerk was along with the whole body jerk. Hurts to think and remember it even now. What I meant with my husband is that I am trying to see how she will act when the Topamax is fully out of her system. In other words I want to see the tics if they come back. If she eats something different now and then starts to tic, I will never know if its what she ate or if the topamax has finally left her system....do you know what I mean? My husband just forgets about it (not on purpose) and its just frustrating because I really want to be able to see what happens off from the topamax before I enter into the picture something different like a different candy she has never ate before. Do you understand...what I mean? My husband said he forgot all about it and I just think it should be top priority and wonder how he could forget. He himself was in tears when we could not help her last year. I just am so focused on this withdrawal thing.....and I think he should be too. This whole puzzle is hard enough to figure out....it would be easier if both parents were on the same page. I am going to smack him in the head next time LOL

UPDATE: Still nothing everything is great and her mood is better than ever! We are taking nothing as of this point....not even vitamins. I am holding off on everything so I will not get confused and overwhelmed. Want to find all the triggers. The only thing I have been given her is the claritin tablets (littel purple tablets 2 per day) in the morning after breakfeast. I started this because of the eye rubbing and it has not come back. So......3rd night no Topamax and so far so good.........I wish I knew how long it takes to get out of the system though... I will add that she had some candy yesterday and a milk shake made with bananas, strawberries and almond milk. I didn't know about the starburst candy (Daddy did it!) but she only had one square and I feel I have to let her enjoy that once in awhile but I stresses to my husband how important this timing is right now. I want to know the first trigger and am also logging everything. Sometimes I feel I am alone in this....he really just does not get it and it frustrates me to NO END! Does anyone else have a husband who really does not get it???? What do you do in a situation like this to make them understand the importance of it all? Its not that he does not care...its hard to explain I guess.

Cheri....Thank You I will have to look for this at Publix this week. Hope we like it!

Forget to add they we too tried the kirkmans you mentioned....in my opinion it made things worse back then so I stopped them. Again everyone is different though...and sometimes with the wax and wane its impossible to know if something is causing it or not. Frustrating!!!!

Hello, My daughter always took intrakid and I still take the intramax. A few others here I know started the vitamin so maybe they can chime in?? Also Mercola.com came out with a new vitamin for children that has no iron in it. We also take vitamins from xtendlife....my daughter has no issues on these and I really liked them. I only give every other day because I am scared.....we switch off between these three brands because of the cost....sometimes I can afford the really good one such as intrakid and others I can only swing the mercola.com ones. It has never effected her and I kind of like the switching....you get some things out of one that maybe another one does not have and I never really worry about getting too much of something I guess. We are still on our bottle of the mercola ones now (every other day) and next I will splurge and get the intrakid and then the xtendlife. Although this works for us....as you and we all know everyone is different. I know its frustrating when its comes to vitamins...you never know what they will react to or what they may get too much of and lastly what they do not get enough of.....this is my reasoning for switching the brands and of course the everyother day dosage. Too scared to change it.....I have learned when its not broken...don't try to fix it LOL Hope you find what you are looking for. And I am sure some of the other intrakid users may chime in.

Okay Cheri I will. I always forget to post the link on the end as well! Sorry I also feel more than 3 out of 1000 experience Tics/TS. Don't know why but I do.

Maryann, not sure how old your daughter is but a friend of mine has a son who legs (calves) hurt alot and they dismissed it to growing pains. Her husband said his legs hurt the same way. I know some believe in growing pains and some do not......just thought I would mention it. Not sure what the doctors call is on growing pains either...

How Common Is Tourette's Syndrome? Neurological Disorder Affects Three Out of Every 1,000 Children, Boys More Often Than Girls By Bill Hendrick WebMD Health News Reviewed by Louise Chang, MD June 4, 2009 -- Tourette's syndrome afflicts three out of every 1,000 children between ages 6 and 17 in the United States, the CDC says in its first-ever estimate of the prevalence of the neurological disorder. The findings are revealed in the June 5 edition of the CDC's Morbidity and Mortality Weekly Report. According to the MMWR study, Tourette's syndrome is three times more common in boys than in girls, and about twice as common in children 12 to 17 as in those 6 to 11. Twenty-seven percent of children with Tourette's syndrome have moderate or severe cases, the study says, and 79% of youngsters who have it also have been diagnosed with at least one additional mental health or neurodevelopmental condition. Tourette's syndrome typically starts in childhood and is characterized by recurring multiple motor tics, and at least one vocal tic. Symptoms are generally most severe between 10 and 12 years of age and lessen by adulthood. These are involuntary, repetitive, stereotyped, usually sudden and rapid movements or vocalizations that may be suppressed for short periods of time, the CDC report says. "TS [Tourette's syndrome] and tic disorders have been linked to higher rates of attention deficit/hyperactivity disorder, obsessive-compulsive disorder, and impairments associated with these conditions, such as learning disabilities and problems with peer relations," says Rebecca Bitsko, MD, health scientist at the CDC, in a news release. She says because so many children with Tourette's also have other neurological or mental health problems, the relationship between the conditions warrant further study. Non-Hispanic white children were more than twice as likely as non-Hispanic black children or Hispanic children to have a parent-reported case of Tourette's syndrome. "Having an estimate of the number of U.S. children who are diagnosed with TS is a first step toward understanding the overall impact of this condition in the population," Bitsko says. "Further research must examine differences in access to health care for children with TS in different population groups, the impact of TS on the quality of life, long-term outcomes for children with TS, and strategies for reducing the impact of conditions associated with TS." Researchers examined National Survey of Children's Health data from parents or guardians for 64,034 children 6-17 years old between April 2007 and July 2008. The NSCH was the first large, national, population-based survey of U.S. children less than 18 years old that included questions about Tourette's syndrome. SOURCES: Morbidity and Mortality Weekly Report; vol 58: pp 581-585. News release, U.S. Department of Health and Human Services. © 2009 WebMD, LLC. All rights reserved.

Bmom When you say "I guess they" do you mean children with tics have body jerks at night? or just people in general? I thought most (not all or always) tics disappeared when sleeping? What do you think the jerk is about??? she only jerked before when she ticcing constantly.....it never went away even in her sleep.

Thanks for the tip CSP. My daughter has been tic free so I am sure I will see that FIRST one pop through UGH!!!! I hope we can better handle it. The little tics like eye twitching and the mild ones never bothered her or I. Its when the severe headbob and whole body jerk came into play that pretty much helped us all fall apart. I am okay with the tics until they bother her and then I feel helpless..... I hope they stay mild. Cheri...what stuff are you speaking of? Never heard of it. I have B-complex on hand, mag and the new "tic Tamer" ready to go. Tonight there was NO MEDICINE at 7:30!!!!!!!!!!! I guess now we will just have to wait and see what happens. I am right now watching her sleep and I have seen her sort of jerk her shoulders....tics back so soon??? or just a dream??? I really do not know about this. And I am getting very scared to say the least. Thanks for all your support and wishes!

GOSH!!!!!!!!! When or where does it end!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Deanna....do you mean PM or email email?? I did get your PM but I did not receive an email from you. Thanks everyone for your good wishes...I really am not feeling so well about this....just scared I guess.

Anyone ever have issues with olives? Black or green? I bought the all natural ones today and thought I would make a cold pasta salad with the veggy macaroni. She has had black olives before but never green, are they basically the same? May sound like a stupid question but I am getting into the habit of checking EVERYTHING different out thoroughly... Thanks everyone (I tried to edit my mispelling of Olives in the title but it will not let me)???