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Last night on Topamax

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continued good luck to you ---like we have talked about before some spouses see past the tics I know mine does, he loves our son and feels the tics are such a small piece I think as moms we want to fix everything and some dads as well---but i wish I was more like my husband some days these tics can be consuming it probably makes for a good balance having one parent one way and the other another way. continued good luck I gave my son 25mg last night so we shall see. keep me posted.



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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

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I have heard about 3 weeks to be fully out of system? but I dont know how accurate that is



here is what wiki says about it's half life etc



continuing to pray for a smooth transition off and that things will stay calm.


I dont know if your daughter is dye sensitive but if so see if your pharmacist can find a colorless claritin form for you. when my son was on Crohn's meds initially, we were able to find dye free stuff via either compounding pharmacies or sometimes generic versions.

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Hang in there I know you what mean. continue to keep us posted. It would be something if the tics never came back that would be so awesome. Have a good weekend.



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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

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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



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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)

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Hey myrose,

my little boy jerks in his sleep as well- more right when he's falling asleep and when he's close to waking up that I've noticed- makes me nervous too but I try not to worry about it too much. I've noticed my husband does the same thing and really has done so for as long as we've been married(going on 20 yrs.) and he's never had any kind of seizure. I have felt myself jerk too sometimes when falling asleep and have noticed my 13 yr. old daughter does it too, but none of us have seizures, or any kind of disorder- hopefully it's nothing to worry about.


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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.....

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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!!!!!!




Thanks again for thinking of us.....I will keep updating and keep PRAYING! for us and everyone!

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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

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Just started Nick on homeopathic drops for mold. I guessed he had a mold allergy because it rained in New jersey for 4 weeks straight and he was doing poorly. I used the benedryl for two nights and his tic stopped. I took him off benedryl and tried these drops and he is tic free now. I really think allergies play an important role



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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)

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