Felt Compelled To write...TICS are STILL GONE!

[myrose]

I feel as though I deserted these boards! I got so much encouragement, care, concern and help here. I have been living again! Laughing again! Playing again! ALL WITH MY DAUGHTER AGAIN. I realized how much time I lost with her during the whole ordeal. It still makes me cry when I think about it.

Some of you know my daughters history. Here is a quick recap: Started blinking a few days after receiving 9 vaccinations in one day. Shoulder shrugging and neck tic followed. Pediatrian said to wait it out. I did for a bit. The little twitches didn't bother her, probably bothered me more.

They did seem to increase so after 6 months I went to a neuro on my own. Blood tests were done for pandas and some amino aicds. A 20 minute sleep deprived EEG and an MRI. Blood tests were okay, MRI was okay but the EEG was reading somewhat abnormal. We repeated the EEG but this time a 24 hour one with video monitoring. We were told the 2nd one was okay a few days later. We refused any meds and her tics became part of life but all was still pretty much okay.

Then the arm tic started. This prevented her from writing in pre-school. Her arm would jerk forward while writing. I called the neuro back and then suggested clonidine. I said okay. This seemed to work but shortly after she began to experience nightmares. I was then told that this was unfortunately a rare side effect of the clonidine. I was furious and refused to try the next one they suggested. That very night I started to educate myself of her condition. I started reading every chance I got. It was then that I found these boards. I learned so much here. I then started with it all and I mean ALL. We did the food thing, the supplements, the eliminations, the allergy thing, the chiropractor, the physicatrist, the acupunture, the therapy. Heck I even iTnstalled a ultra blue violet light on our air conditioning unit. Hepa filter in her room. Got rid of all the carpets. Everything went natural right down to the toothpaste, shampoos, laundry detergent and cleaners. I even sent her pee in for testing and had my home tested for mold. Chlroine filters on the shower heads and a water purification system. I turned my home into the "GREEN" house of the year!

Everything we tried seemed to maybe help but we never sure because they always came back no matter what. It was always just a matter of time.

It was always a NEW doctor, a new test, or something else she couldn't do or eat. I basically put this little girl of mine into a BUBBLE!!!!!!

We even started to avoid birthday parties because of the cake and things, she also ate a different snack than any of the other kids during snack time.

I even took the pool away from her because of the chlorine! Life went on for me but only for the purpose of reading and reading and reading. Looking for triggers and explanations. Little did I know what I was doing to my daughter. I never had time for her anymore. I was always on the computer, always reading, always taking notes, always saying NO you can't have that or NO we can't do that. I tried to make excuses for it all but aftertime she caught on and I saw the sadness in her face. She wondered why she was so different than anyone else. I told her she was NOT different but SPECIAL.

Then the weekend came that changed my life.....She woke up one day with a new tic. This tic was different from the others. It was a head bob up and it was SEVERE. It was so bad it was hard to look at her sometimes. She started to complain about it, this was new because she never complained about her tics.

Her teacher who never even noticed her tics before informed me of it. Her neck started to hurt so bad from the bobbing she was constantly crying.

I picked her up from pre-K that week and once she got in the car she could not stop crying. All the while her head was still bobbing backwards. She told me she hated herself and that no one else at school has shakes (that is what she calls them) She then continued to tell me that I must not love her because I wasn't helping her. I then tried to explain that all the things we were doing was to try and help her. She then said she didn't want anymore help then. She cried all the way home that day and never really was like my little girl again. She began to dislike school which was shocking to everyone but we later learned that some kids were making fun of her. I started to experience SEVERE heart palpatations, stopped eating, lost 9 pounds. The realtionship with my husband was pretty much gone at this point as well. He was always screamed at for something he gave her to eat that was NOT on the list. No one understood what this was like...no one. All I did was read, drink coffee and cry. I spent a week in bed and one day out of the corner of my eye I caught a glance of my daughter. She looked so sad, her eyes swollen from the constant crying and her neck held to the side because of the pain. I was either going to just lay back down and die or do whatever I could no MATTER what it is to fix this mess. I chose to get out of bed that day and call yet another neuro. My daughter was SO SICK of doctors by now. She wouldn't even go near them. I had her records sent over via fax the next day and the office called me quickly. He said it looked like seizure activity in my daughters EEG. We scheduled to have yet another done and in the meantime he called us in a script for topamax. I picked up the topamax that day. Within 3 days her tics were gone. I was astonished to say the least! I took a walk with my daughter that night and for the first time in what seemed a lifetime....she wasn't stomping her feet. She was singing!!!!!!!!!!!!!! I was SO SCARED to hang on to this! We have had too many hopes when something worked for a bit only to have them come back. I thought finally maybe we have found the problem. I HATED the old Neuro and wanted to do VERY bad things to him. Just thinking we went throug all that ###### for nothing. Well....we did the EEG wih the new neuro expecting fully to get a diagnosis of some sort of seizure disorder. Especially because of the Topamax taking the tics away. To our surpirse her EEG showed a little discharge but was fine and she definitely has no seizure activity going on and the tics are not related at all to anything in her EEG anyhow. Puzzled as we all were we decided to keep her on the topamax and see what happened and if they came back. It was smooth sai;ing for about a month 1/2. We went in for a check up and all was well. The kind nurse practioner even gave me some free samples of topamax. She knew that our insurance covered NOTHING and at this point after all the tests and thigns we were about $18,000 in debt. I thanked her and and went home. I started my daughter on the topamax samples after her prescription ran out. Two or Three days later I almost fell to the floor when I saw her head bob came back.

I couldn't believe it, I just wanted to die. I knew that if we all had to go through this again the outcome was just not going to be a goodone for anyone.

I took a deep breath and suddenly remembered all the things I learned on this board about ingredients! My daughter was taking topamax in the sprinkle cap form but the ones the nurse gave me were in a tablet form. For the heck of it I researched the ingredients and WOW they were different. I quickly called in to get her old prescription renewed and refilled and started her back on the sprinkle cap form the next day. One day later...the tics were gone again.

Its been almost 3 months now and we are back to the family we used to be. My daughter is SO HAPPY! I have her back!!! We sing, we dance, we play, we make cookies, we do everything together. I LOVE this little girl so much and to think back on what I turned her life into will always be hard to forgive myself.

I lost so much time with her! The tics ran my life and then they took hers over.

I know how most of you feel about meds and I can assure you that I did my research well. Topamax is used to treat migraines, seizures and is also being recently used for weight loss. Its the only med that does not cause that Tardive thing (movement disorder). It does have some scary side effects like tingling, kidney stones but this is in high adult doses from 50 to 400 mg. My daughter started at only 15mg and after a week we went up to 25mg. We are staying here and I will never increase. The neuro continues to push an increase stating that she is at too low of a dose for her weight but I have and will continue to REFUSE. This low dose has never caused any issues for my daughter. The first week on it I noticed that she lost her temper a little more but as fast as I got concerned...it went away and never came back. She is not tired like most tic meds make you and she has not gained or lost any weight. She is still 5 years old but had enough maturity to tell me that she NEVER wants to stop taking her medicine. She asks me for it every night after dinner. We continued to eat well and healthy, we always did before this anyhow so there is not a big change there. But sometimes we go out and she eats WHATEVER SHE WANTS!!!!! Sometimes we go to Mcdonalds TOO!!!

She swims everyday again and we make it a point to go to EVERY BIRTHDAY PARTY we get invited to and I let her have all the cake and ice-cream SHE WANTS!! She even eats the same snacks as everyone else does in school now.

She turns 6 in a few weeks and Monday was her first day in Kindergarden!! SHE LOVED IT!!!!!!!!!!!!

The only other thing she takes other than topamax is a good multivitamin.

Well I am sure this turned into a novel! I just felt so compelled to share our success with topamax to everyone.

Hopefully one day she won't need medicine but today she does and I am okay with that now. One thing I have learned through this whole ordeal is what really counts is the QUALITY of life. It is for us anyhow. Have a nice night everyone and I sure do wish gods speed on anyone who needs it. Also a big hello to all my friends here and a BIG Thank You to all of you who have helped me through one of the most difficult times of my life.

[patty]

Myrose,

 

I am so happy to hear about your success. I understood everything you wrote and felt you spoke for many of us. How sweet it is to be truely free and happy and enjoy your family!

 

Best wishes to you & your family.

 

Pat

[guy123]

Glad you have success!

 

My notes about Topamax say this:

 

Class:

- Anticonvulsant

 

Name:

- Topiramate

 

Tradename:

- Topamax

 

Method:

- The reduction of tics in some patients may be explained by its potentiation of GABA activity

 

Notes:

- Can be used for OCD

- No reports of it exacerbating movement disorders

 

Side-effects:

- Change in taste

- Pins and needles

- cognitive deficiency

- difficulty understanding concepts

- loss of appetite

- somnolence

- nausea

- upper respiratory tract infection

- osteoporosis

 

 

Tomorrow I'm going to do more research on this drug. Right now it's 3:20 AM and I should be in bed

[myrose]

Yes Guy123 as I stated there are so nasty side effects but those occur in adult doses of 100mg and up. An adult neighbor friend of mine here resorted to Topamax a few years ago because she could not function anymore in just the daily grind with her migraines. She started at 100mg and worked up to 300mg. The good news is that the migraines stopped for the first time in years! The bad news is that but she lost quite a bit of weight, could not drink soda anymore because of the taste, and had tingling sometimes in her feet and hands. She had to come off the topamax because of it. She then met another doctor who told her that the trick to the topamax is to start at the lowest dose possible and work your way up EXTREMELY slowly. At a last resort she tried again and had success this time. She stayed at 200mg this time and the few sie effects that came again had passed quickly. She is back to work and very happy now.

Her Doctor also suggested taking supplements with the medicine. One she mentioned to me was B-6. Apparently there have been quite a few studies that are showing some supplements relieve the side effects of meds. B6 being one of them. I wish her luck and hope her continued success.

My daughter is only 25mg, its a VERY low dose for her body weight but for some reason the tics vanished anyhow. If the tics came back (hate to think of this) I would NOT increase her dose. She is too young to have side effects much less understand them and I STILL hate the thought of meds.

I am not sure how old you are but if you decide to try topamax PLEASE remember to just go slowly. We still have not got a diagnosis of Tourettes, she labeled as a chronic tic order. Apparently she had a predisposition for them and the 9 shots brought them out. One of the boards I cam across while reading one night had a girl who had been diagnosed with Tourettes and after starting the topamax it dissapeared. NOt sure how old she was or what dose but she never mentioned side effects. One thing I have learned through my journey is that what works for one does not always work for everyone and that everybodys body is different and reacts differently to EVERYTHING. So as I secretly hold my breathe I will say that Topamax has been a miracle for us and the quality of life it has given her far exceeds anything else for the moment..... Enjoy your day and I am hope you got some sleep!

 

 

 

 

 

 

 

 

 

Glad you have success!

 

My notes about Topamax say this:

 

Class:

- Anticonvulsant

 

Name:

- Topiramate

 

Tradename:

- Topamax

 

Method:

- The reduction of tics in some patients may be explained by its potentiation of GABA activity

 

Notes:

- Can be used for OCD

- No reports of it exacerbating movement disorders

 

Side-effects:

- Change in taste

- Pins and needles

- cognitive deficiency

- difficulty understanding concepts

- loss of appetite

- somnolence

- nausea

- upper respiratory tract infection

- osteoporosis

 

 

Tomorrow I'm going to do more research on this drug. Right now it's 3:20 AM and I should be in bed

[bmom]

I just had to say that I am so glad that you found something that is working. How strange it is that the tests came back abnormal and then normal. It seems like there was definately some sort of intervention that made the doc. try this specific drug. I have often been feeling like you with taking everything away from my son. I am now headed down the PANDAS route and hoping that we will find success there. My poor son has not watched tv or done videos for months and believe me, if that solved the problem 100% I would continue. It seemed to help, but no cure. Anyway, I started thinking that quality of life is suffering and considering going the med route instead. I then began to pursue the PANDAS more again and I am hoping this will be our "topamax". I think what we have seen on this board is that everyone wants what is best for their child. That may be different for each person. Good luck and thanks for taking the time to post. For me, every piece of info. is important. I keep notes on what worked whether that be meds, supplements, etc. And each success makes me happy.

[guy123]

Yes Guy123 as I stated there are so nasty side effects but those occur in adult doses of 100mg and up. An adult neighbor friend of mine here resorted to Topamax a few years ago because she could not function anymore in just the daily grind with her migraines. She started at 100mg and worked up to 300mg. The good news is that the migraines stopped for the first time in years! The bad news is that but she lost quite a bit of weight, could not drink soda anymore because of the taste, and had tingling sometimes in her feet and hands. She had to come off the topamax because of it. She then met another doctor who told her that the trick to the topamax is to start at the lowest dose possible and work your way up EXTREMELY slowly. At a last resort she tried again and had success this time. She stayed at 200mg this time and the few sie effects that came again had passed quickly. She is back to work and very happy now.

Her Doctor also suggested taking supplements with the medicine. One she mentioned to me was B-6. Apparently there have been quite a few studies that are showing some supplements relieve the side effects of meds. B6 being one of them. I wish her luck and hope her continued success.

My daughter is only 25mg, its a VERY low dose for her body weight but for some reason the tics vanished anyhow. If the tics came back (hate to think of this) I would NOT increase her dose. She is too young to have side effects much less understand them and I STILL hate the thought of meds.

I am not sure how old you are but if you decide to try topamax PLEASE remember to just go slowly. We still have not got a diagnosis of Tourettes, she labeled as a chronic tic order. Apparently she had a predisposition for them and the 9 shots brought them out. One of the boards I cam across while reading one night had a girl who had been diagnosed with Tourettes and after starting the topamax it dissapeared. NOt sure how old she was or what dose but she never mentioned side effects. One thing I have learned through my journey is that what works for one does not always work for everyone and that everybodys body is different and reacts differently to EVERYTHING. So as I secretly hold my breathe I will say that Topamax has been a miracle for us and the quality of life it has given her far exceeds anything else for the moment..... Enjoy your day and I am hope you got some sleep!

 

I'm 27.

 

I also read of acute glaucoma as a side effect.

 

Seriously tho I will ask my doctor about this.

 

And I don't drink pop anyway

 

Are you allowed to just stop taking Topamax whenever you want? Or is it one of those that you have to come off very slowly?

 

Seriously, reading your thread made me happy. I'm glad you found something that works and I hope it keeps working :D

[Toms_Mom]

Thanks so much for checking back in with us! Please continue to check in once in a while (even over the years would be great) to let us know if the topamax is still working well. It's so good to hear! I'm so glad you have your life back! We know a boy who was on orap for 7-8 years and did great on it and no longer needs it- (although I know that is a drug most of us want to avoid and consider medication as a last resort) it's great that it worked for him and I'm glad to hear of the topamax as a possible medication if we ever decide to go that route.

BTW what is sprinkle cap form?

 

Thanks,

Mary

[myrose]

Hello TomsMom. Sprinkle caps are just capsules filled with little white spheres. You can pull them apart and sprinkle the spheres in food. Maybe thats why they call them sprinkle caps???? The tablet form was just a solid fomed pill like an aspirin. The ingredients are different and thats what I cannot figure out. Why would they be?? Anyhow I hope all is well with you. As I got back on the these boards tonight and started reading....all these bad memories started to flash back in my mind. I just cannot understand why there is not info info out there and studies for tics. Most people I know have never even heard of them. I am one that never heard of them either until they showed up in my daughter. They can most times cure cancer and now the cloaning thing......what about the tics????

We also luckily ended up with a nice new pediatrician who believes in natural healing as well as meds when needed. My daughter at one time felt the urge to pee after laying down every night and had to get out of bed 5 or 6 times! It only stopped when she finally grew so tired that she would just fall asleep through it.

The new ped gave put her something called nux vomica (hope I spelled that correctly) for seven days and it seemed to clear up I would say more than 90% of the problem and then it just went away shortly afterwards. It cleans the toxins out of you body. She is also the one that is convinced that my daughter had a predisposition for tics and the 9 shots in one day brought them out. She won't give my daughter any shots. She has them all anyhow up to this point. Just wish I would have started with this pediatrician from the get go............For now I am just going to make sure that my daughter enjoys her life and stays a happy child.

We will see the new neuro every 6 months so we can monitor her. I will keep you posted of anything that changes....good or bad.

 

 

 

 

 

 

Thanks so much for checking back in with us! Please continue to check in once in a while (even over the years would be great) to let us know if the topamax is still working well. It's so good to hear! I'm so glad you have your life back! We know a boy who was on orap for 7-8 years and did great on it and no longer needs it- (although I know that is a drug most of us want to avoid and consider medication as a last resort) it's great that it worked for him and I'm glad to hear of the topamax as a possible medication if we ever decide to go that route.

BTW what is sprinkle cap form?

 

Thanks,

Mary

[faith]

hi myrose,

glad to hear things are going so well still. I understand full well how it must feel to go back to being "normal" after going thru all that. Even thought we want our kids to eat healthy, we also want them to enjoy the kid stuff that their friends are enjoying. It does bother my son a great deal when I have to restrict something and he does not like anyone to know-and I have loosened up on some things as long as it does not seem to cause any problems. One thing I would say to anyone following dietary restrictions, is to stick with it if it is working for your child; if it does not seem to help much, then the stress of it all for both parent and child can put you worse off than before.

 

Did the docs ever figure out if she really was having seizures? Or is this med used for tics/ts too? Wow, all the issues are gone absolutely? so glad you have found relief.

 

Faith

[lmcgill]

It is nice to hear success stories. Reading a couple of your comments struck home to me. We have been having success with our son as well. He started tics over two years ago and my life has never been the same. The fact that he is doing pretty good now doesn't seem to help as much as I thought it would. Since we have kept him mostly wheat free as well as the artificial flavor color and put him on Bonnies Vitamin program he seem to do well. He has the odd eye or other facial movements, but they are so minor. The last time he had any body tics was the day before he started grade 3 last September. I remember that day with tears even today, the poor kid, we had just moved, he was starting a new school as well as a long bus ride (private school) and seemed to internalize everything. As soon as he got to school he seemed fine, and the body movements stopped. This was also the time we put him on Bonnies. We will see how the start up is for grade 4 in a couple weeks, but I am expecting less of a reaction since he has the same teacher and he knows the routine.

We cheat more now, like give him some wheat products, but I will give him a Glutenease tablet before. So far so good, he is acting like a smart normal 9 year old.

I just wish I could relax, it is not good for me or anyone around me. I still get the funny stomach feeling when I think he may be starting some tic, I still get nightmares of him getting tics. I try so hard not to show any negative signs of this to him, but I get the feeling he may dislike me for his diet sooner or later. My mom has extreme Celiac conditions, but his blood test did not show he was. He just seems to look and feel better when he is gluten free, I don't understand, but we may take him to Seattle to a specialist that uses different tests to make sure the diagnosis is %100 accurate. Even if he is negative for Celiac, I have heard that wheat and gluten has an effect on the neuological functions of the brain??

Yes, this website has been very helpful to me....as far as helping my son, now I need to work on myself.

[Vajra]

I totally related to the poignant part of your post where you describe how much work the research and lifestyle changes require. It can consume your life. I'm so glad you have your life back.

[pmoreno]

Wow, this sounds just like us - in terms of all you've tried - the hepa filter, the mold testing, the pee testing, the special diets - no regular snacks (even cutting out most sugars in case she had an overgrowth of yeast in her gut) She got extremely sick over that and I had gone on that with her to see what she was experiencing, but I got even more ill - had to go to ER due to low blood sugar - had the shakes and everything. The only thing that's different are the symptoms. She started her tics & OCD after a major viral or bacterial infection (high fever for 1 week) in November and then gradually over months got better (normal for 3 months) now is back to the same problem. She has eye blinking, squinting & hands curling up as her tics, but she has so much more - no concentration, unable to read, write, draw, play, dress, learn, listen, respond, etc. We believe she has PANDAS and are in the process of trying the treat that. If it had just been the tics, I guess we may have suspected seizures too. I'm surprised that your doctor actually gave you the topamax when her EEG was fairly normal. I wonder what made him so sure that that was what she had. I wonder too if it would help for tics in other children. Pat

 

 

I feel as though I deserted these boards! I got so much encouragement, care, concern and help here. I have been living again! Laughing again! Playing again! ALL WITH MY DAUGHTER AGAIN. I realized how much time I lost with her during the whole ordeal. It still makes me cry when I think about it.

Some of you know my daughters history. Here is a quick recap: Started blinking a few days after receiving 9 vaccinations in one day. Shoulder shrugging and neck tic followed. Pediatrian said to wait it out. I did for a bit. The little twitches didn't bother her, probably bothered me more.

They did seem to increase so after 6 months I went to a neuro on my own. Blood tests were done for pandas and some amino aicds. A 20 minute sleep deprived EEG and an MRI. Blood tests were okay, MRI was okay but the EEG was reading somewhat abnormal. We repeated the EEG but this time a 24 hour one with video monitoring. We were told the 2nd one was okay a few days later. We refused any meds and her tics became part of life but all was still pretty much okay.

Then the arm tic started. This prevented her from writing in pre-school. Her arm would jerk forward while writing. I called the neuro back and then suggested clonidine. I said okay. This seemed to work but shortly after she began to experience nightmares. I was then told that this was unfortunately a rare side effect of the clonidine. I was furious and refused to try the next one they suggested. That very night I started to educate myself of her condition. I started reading every chance I got. It was then that I found these boards. I learned so much here. I then started with it all and I mean ALL. We did the food thing, the supplements, the eliminations, the allergy thing, the chiropractor, the physicatrist, the acupunture, the therapy. Heck I even iTnstalled a ultra blue violet light on our air conditioning unit. Hepa filter in her room. Got rid of all the carpets. Everything went natural right down to the toothpaste, shampoos, laundry detergent and cleaners. I even sent her pee in for testing and had my home tested for mold. Chlroine filters on the shower heads and a water purification system. I turned my home into the "GREEN" house of the year!

Everything we tried seemed to maybe help but we never sure because they always came back no matter what. It was always just a matter of time.

It was always a NEW doctor, a new test, or something else she couldn't do or eat. I basically put this little girl of mine into a BUBBLE!!!!!!

We even started to avoid birthday parties because of the cake and things, she also ate a different snack than any of the other kids during snack time.

I even took the pool away from her because of the chlorine! Life went on for me but only for the purpose of reading and reading and reading. Looking for triggers and explanations. Little did I know what I was doing to my daughter. I never had time for her anymore. I was always on the computer, always reading, always taking notes, always saying NO you can't have that or NO we can't do that. I tried to make excuses for it all but aftertime she caught on and I saw the sadness in her face. She wondered why she was so different than anyone else. I told her she was NOT different but SPECIAL.

Then the weekend came that changed my life.....She woke up one day with a new tic. This tic was different from the others. It was a head bob up and it was SEVERE. It was so bad it was hard to look at her sometimes. She started to complain about it, this was new because she never complained about her tics.

Her teacher who never even noticed her tics before informed me of it. Her neck started to hurt so bad from the bobbing she was constantly crying.

I picked her up from pre-K that week and once she got in the car she could not stop crying. All the while her head was still bobbing backwards. She told me she hated herself and that no one else at school has shakes (that is what she calls them) She then continued to tell me that I must not love her because I wasn't helping her. I then tried to explain that all the things we were doing was to try and help her. She then said she didn't want anymore help then. She cried all the way home that day and never really was like my little girl again. She began to dislike school which was shocking to everyone but we later learned that some kids were making fun of her. I started to experience SEVERE heart palpatations, stopped eating, lost 9 pounds. The realtionship with my husband was pretty much gone at this point as well. He was always screamed at for something he gave her to eat that was NOT on the list. No one understood what this was like...no one. All I did was read, drink coffee and cry. I spent a week in bed and one day out of the corner of my eye I caught a glance of my daughter. She looked so sad, her eyes swollen from the constant crying and her neck held to the side because of the pain. I was either going to just lay back down and die or do whatever I could no MATTER what it is to fix this mess. I chose to get out of bed that day and call yet another neuro. My daughter was SO SICK of doctors by now. She wouldn't even go near them. I had her records sent over via fax the next day and the office called me quickly. He said it looked like seizure activity in my daughters EEG. We scheduled to have yet another done and in the meantime he called us in a script for topamax. I picked up the topamax that day. Within 3 days her tics were gone. I was astonished to say the least! I took a walk with my daughter that night and for the first time in what seemed a lifetime....she wasn't stomping her feet. She was singing!!!!!!!!!!!!!! I was SO SCARED to hang on to this! We have had too many hopes when something worked for a bit only to have them come back. I thought finally maybe we have found the problem. I HATED the old Neuro and wanted to do VERY bad things to him. Just thinking we went throug all that ###### for nothing. Well....we did the EEG wih the new neuro expecting fully to get a diagnosis of some sort of seizure disorder. Especially because of the Topamax taking the tics away. To our surpirse her EEG showed a little discharge but was fine and she definitely has no seizure activity going on and the tics are not related at all to anything in her EEG anyhow. Puzzled as we all were we decided to keep her on the topamax and see what happened and if they came back. It was smooth sai;ing for about a month 1/2. We went in for a check up and all was well. The kind nurse practioner even gave me some free samples of topamax. She knew that our insurance covered NOTHING and at this point after all the tests and thigns we were about $18,000 in debt. I thanked her and and went home. I started my daughter on the topamax samples after her prescription ran out. Two or Three days later I almost fell to the floor when I saw her head bob came back.

I couldn't believe it, I just wanted to die. I knew that if we all had to go through this again the outcome was just not going to be a goodone for anyone.

I took a deep breath and suddenly remembered all the things I learned on this board about ingredients! My daughter was taking topamax in the sprinkle cap form but the ones the nurse gave me were in a tablet form. For the heck of it I researched the ingredients and WOW they were different. I quickly called in to get her old prescription renewed and refilled and started her back on the sprinkle cap form the next day. One day later...the tics were gone again.

Its been almost 3 months now and we are back to the family we used to be. My daughter is SO HAPPY! I have her back!!! We sing, we dance, we play, we make cookies, we do everything together. I LOVE this little girl so much and to think back on what I turned her life into will always be hard to forgive myself.

I lost so much time with her! The tics ran my life and then they took hers over.

I know how most of you feel about meds and I can assure you that I did my research well. Topamax is used to treat migraines, seizures and is also being recently used for weight loss. Its the only med that does not cause that Tardive thing (movement disorder). It does have some scary side effects like tingling, kidney stones but this is in high adult doses from 50 to 400 mg. My daughter started at only 15mg and after a week we went up to 25mg. We are staying here and I will never increase. The neuro continues to push an increase stating that she is at too low of a dose for her weight but I have and will continue to REFUSE. This low dose has never caused any issues for my daughter. The first week on it I noticed that she lost her temper a little more but as fast as I got concerned...it went away and never came back. She is not tired like most tic meds make you and she has not gained or lost any weight. She is still 5 years old but had enough maturity to tell me that she NEVER wants to stop taking her medicine. She asks me for it every night after dinner. We continued to eat well and healthy, we always did before this anyhow so there is not a big change there. But sometimes we go out and she eats WHATEVER SHE WANTS!!!!! Sometimes we go to Mcdonalds TOO!!!

She swims everyday again and we make it a point to go to EVERY BIRTHDAY PARTY we get invited to and I let her have all the cake and ice-cream SHE WANTS!! She even eats the same snacks as everyone else does in school now.

She turns 6 in a few weeks and Monday was her first day in Kindergarden!! SHE LOVED IT!!!!!!!!!!!!

The only other thing she takes other than topamax is a good multivitamin.

Well I am sure this turned into a novel! I just felt so compelled to share our success with topamax to everyone.

Hopefully one day she won't need medicine but today she does and I am okay with that now. One thing I have learned through this whole ordeal is what really counts is the QUALITY of life. It is for us anyhow. Have a nice night everyone and I sure do wish gods speed on anyone who needs it. Also a big hello to all my friends here and a BIG Thank You to all of you who have helped me through one of the most difficult times of my life.

[Claire]

Was your daughter's EEG done with flashing lights as a stimulus? (ie checking for a photosensitive seizure disorder).

[dominique]

,I too went for over a year of doing research. Constantly on the internet, reading, talking with doctors all of the United States trying to find a solution for my sons ticks and OCD. One day he woke up blinking his eyes. Lasted about 2 months. Took him to his doctor every week asking him why this was happening . He said it is normal and kids just get ticks. Then about 2 months later they stopped and about a month later started up again. This time worse. It then went away again and about 5 months later after getting 4 teeth pulled all at once, he woke up with a neck jerking motion. That went on for about 2 weeks, then it was wrist jerking and leg jerking. This went on for months along with major OCD as well. He would freak out if anyone even sat on his bed. He was full of anxiety and especially due to separation. I also noticed that he was having difficulty breathing. His nose was completely stuffed up too. I thought it might be allergies. I once again went back to our family doctor asking him for help. He kept saying, nothing was wrong, kids get ticks and they go away. They come and go. I then did research on Tourettes and it mentioned Pandas. I went back to our doctor and asked if Pandas was a possibility since the ticking came on very suddenly and OCD as well. He had turned into a different child overnight. He said that he would test for strep. He tested positive. By now, it was too late, he had already had the strep for months and the bad proteins had developed and they were attacking the Basil Ganglia of his brain creating the movement disorder and the OCD. The doc put him on antibiotics and they did not work, which I hear is common with Pandas. We then took our son to a infectious disease doc in San Francisco who put him immediately on a strong antibiotic cocktail of 3 different antibiotics. She was determined to eradicate it. She and another doctor in Texas said he should have his tonsils and adnoids removed immediately. It lives in the nasal pharnyx cavity of children supposedly. The strep was everywhere. In his adnoids, blood, gut everywhere. It was even coming out of his nostrils. We also had a Pandas test which was Positive! We had the operation and did the antibiotics. He has never had another tick since. His breathing is perfect. No more allergies. No more stuffy noses. No more OCD . I have my child back! He seems totally healthy. It has been a year now and he will be 10 in Jan. We are on a program right now with a doctor on the east coast. I give him over 40 herbs a day. No dairy, no wheat, no gluten, no casein no meat. He also uses a great product called XClear. It is a nose spray. We all use it twice a day. Kills strep on contact. He also gargles with Biotene Mouthwash every day. Takes 2,000mg. of vitamin C/sodium ascorbate daily and lots of cranberry. Our Doctor has a strep protocol and believes that by following it carefully it will keep the gut in balance and make it an environment where strep can't survive any longer.

It has been a long journey for us. I too have become incredibly neurotic. I worry everytime he gets invited to a birthday party or goes to a friends house. My relatives think I am nuts! My husband and I almost got divorced last year because of the stress of it all. The year he was so sick, I couldn't leave the house, I saw nobody that I knew. I didn't go to work and I lost 28 pounds. We almost lost our house due to this. Every time I had a phone consultation it cost 300.00. This website saved my Life and sanity! Even though my son is back, I never take a day of it for granted. Every day, I make sure that he eats well, takes his smoothies and most important his C and nose spray. The bad protein that he developed from the strep will never go away. If he ever gets strep again, he will get those same symptoms all over again. My mission is to hopefully keep him from ever getting it again. It is suppose to disappear after puberty. I think I can hang in there until then. So far , so good.

 

Dominique

[patty]

Wow dominque, what an amazing recovery story! I am so glad to hear you found help for your son and he is doing well. Parents never cease to amaze me what they are willing to do & give up for their kids!

 

Pat