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Update on Daughter who started again


myrose
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As most of you know.....My daughter has been tic free after starting seizure med...topamax. She was on a six week program with supplements to rid her of a few things including a heavy metal load. She was fine for the first 4 weeks but the last two weeks of the program required me to add a few different supplements (fish oil and some others to extract metal)

She started to have a few body jerks and I was debating whether or not to ride it out.

 

I decided to stop all supplements.....the tics went away 100% within two days.

She still is tic free (still on topamax) and for now I am not doing anything. Want to enjoy the holiday!

 

Lastly.......I HOPE EVERYONE HAS A CALM, HAPPY AND SAFE HOLIDAY SEASON. MAY THERE BE MIRACLES FOR ALL OF US.

 

MERRY CHRISTMAS EVERYONE AND HAPPY NEW YEAR!

 

SEE YOU ALL NEXT YEAR! PUTTING THE COMPUTER AWAY FOR NOW!

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Myrose,

It's so great to hear your daughter is tic free again! I hope you had a great Christmas. I did, it was great to just enjoy the day with my family and not worry about my sons tics if it was just for one day. I decided not to worry and enjoy the day, I am glad I did! If you don't mind, I have a couple of questions for you. You said your daughter is on topamax. I am glad that you have found something to stop your daughter tics. Just wondering when you started your daughter on topamax, did you see any side affects? Do you see any side effects now? I am wondering because I want to look at all options if my sons tics get worse. Because I have read they can get worse between the ages of 8 to 13. My sons turns 8 soon. I am praying they do not get worse but I just want to look at all my options and peoples experiences with different options. Any thoughts would be great. Thanks Char.....

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Hello char

I am not myrose... but I have started my son on topamax about a week ago. We started on 25 mg and so far he has no side effects. He has slowed down a bit but still has some tics. I am sure the fact he got a psp for Christmas and he is having so much fun playing with it is not helping but I hate to take all his fun from him and soon his play time will be watched again. He will be 11 in Feb. and weighs about 69 lbs.

My dad and mom really noticed on Christmas that he is doing better. We haven't told anyone about the medicine, wanted to see if they noticed...they were quick to tell me whent hey saw the tics, wanted to see if they would tell me when they didn't. We sitll have a sniffing he does but not sure if that could be something with his sinuses and he does a body twist, but not nearly as bad and a few hand things but they too are not as bad. His head moves a bit but I am thinking that is connedted with his sniffing... he tics more when the sniffs, like it jerks him. It has only been a week but I am still giving him his b6, grape seed...scared to stop that until i see then really going away. The doctor wanted me to go to 50mg after a week, but i think i will wait just alittle longer and see what happens before i go higher...if i do that will be the top for me... For my son the 10th year has been his WORST year ever... They were not nearly as noticable to friends and family that doesn't see him often.

 

HTH

Mary

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quote name=Char' date='Dec 27 2008, 08:40 PM' post='28966]

Myrose,

It's so great to hear your daughter is tic free again! I hope you had a great Christmas. I did, it was great to just enjoy the day with my family and not worry about my sons tics if it was just for one day. I decided not to worry and enjoy the day, I am glad I did! If you don't mind, I have a couple of questions for you. You said your daughter is on topamax. I am glad that you have found something to stop your daughter tics. Just wondering when you started your daughter on topamax, did you see any side affects? Do you see any side effects now? I am wondering because I want to look at all options if my sons tics get worse. Because I have read they can get worse between the ages of 8 to 13. My sons turns 8 soon. I am praying they do not get worse but I just want to look at all my options and peoples experiences with different options. Any thoughts would be great. Thanks Char.....

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mommyof2,

 

Thanks for sharing what you are trying with your son. It's great to hear that the topamax is helping a little with the tics. Did your son ever have eye rolling? My son has eye rolling that does not seem to get any better, it is all the time. It is very hard for him to focus, when his eyes are rolling all the time. Can you please keep me updated on how your son does on the topamax? I am very interested, because as I have said before I want to look at all my son options and others experiences with different things they have tried. I hope your son continues to do well on the topamax. Char.....

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Yes Char I would be happy to keep you updated. As I said so far so good. I have noticed him sleeping in more since he is on the topamax, but that also could be due to the Christmas break and staying up alittle later than normal. No my son did not have eye rolling, he stared in about k-garden with blinking, hand smelling and mouth stretching. We called them habits at the time and would tell him everytime we saw to stop and finally he would and then something else would start. It wasn't until about 2nd grade when they got more noticable and more movements like arms and hands. In about 4th grade they just seemed none stop. It seemed like he would not even get a 10 second break from one. I now noticed since we started the topomax that he is still for longer periods of time, but like i said still does some. My parents noticed them getting better but as a parent I tend to be more conscience of them, seem to be watching him and praying the next thing we try will help. We were so optamist about a month ago when we took him for treatments our Cranial Sacral lady told us about. She and a Native American worked on him by healing him with touch and would go from the outside of his ora to the inside. We had 3 sessions and they said that he will be fine... well he still had them, so we went to the topamax. Myrose has been very helpful and supportive for me and I thank her for that. I will keep you up on his progress. We did decide after a week and a half on 25 mg to go to where the doctor told us and give him 50mg at night and that is my limit... just hoping for a little more improvement and I will be satisfied with it. I tell him I don't expect everything to stop... He has his own little things that make him him. Just would love to see him be able to run around and play with his friends and not be flapping his wrist so hard. He is a very good pitcher for his baseball team and I would hate for his wrist to wear out :) Also hate seeing kids making fun or pointing at him for this.

 

Mary[/font][/size]

 

 

mommyof2,

 

Thanks for sharing what you are trying with your son. It's great to hear that the topamax is helping a little with the tics. Did your son ever have eye rolling? My son has eye rolling that does not seem to get any better, it is all the time. It is very hard for him to focus, when his eyes are rolling all the time. Can you please keep me updated on how your son does on the topamax? I am very interested, because as I have said before I want to look at all my son options and others experiences with different things they have tried. I hope your son continues to do well on the topamax. Char.....

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