Very Scared

[DebbieSp]

My 7 yr. old daughter over the past month has developed a tic. She blinks her eyes really hard and now has added rolling her eyes up in her head and jerking her head back. I took her to her family doc who said she thinks it could be tourettes and I have a referall to a neurologist but I don't know what to say to my daughter about any of this and I just feel scared all the time if anyone has any info they think will help it would be greatly appreciated. Thank you

[afp]

My daughter is also 7. In the last couple of months she has been constantly stretching, bending back her arms , twisting at the torso, stretching her legs, hips, etc. It is really hard to explain. My mother thinks that it is touretts. I have read yours, she doesn't blink or roll her eyes. She was just diagnosed in April of this year with type 1 diabetes, so now everything scares me to death. She comments that she hates doing it, and when I ask why she does, she says she has to. Please anyone let me know if you have any advice.

[DinaGrimes]

Hi Ann,

I also take my daughter to a neurologist at Childrens Hopsital in Philadelphia.  My daughter has been diagnosed with mild tourettes and petit mal seizures.  We are not happy with the neurologist she presently goes to.  I've done a little research on the other neurologist at CHOP and felt that Dr. Brown would be a good fit for my daughter but he is not excepting any more patients.  Could you give me some info on your experiences with the doctors you have seen?  Could you also give me some recommendations?
BTW, my daughter is presently on Lamictal for the seizures and was recently put on Topamax but we took her off of it because it seemed to make her not care about anything (if that makes sense).  Didn't want to do homework, etc.  She is 11 years old.
Any advice would be a big help.
Thanks,
Dina

[oblive]

hi everyone, i have had tourettes since i was in elementary school, i am 25 now and doing well.  
fyi, you don't have to have vocal outbursts to have tourettes.
mine started in elementary with eye blinking and breathing patterns.  my teachers used to tell me to stop breathing so loud. my answer was always I CAN'T.  my tourettes is also accompanyied by OCD. anyway, things were ok until i was eighteen and started to develop many tics. my neck tics got so bad that by doing them i built up the muscle in and around my shoulder and one day one of my tics broke my collar bone. i had to have an eight inch peice of metal with eight screws put in to fix it. I was in the hospital for a week while they tried different medicines to calm the tics. it was crazy. anyway i am doing well on medicine and have two awesome children and a great husband that understands adn supports me.
my advice to you mothers that are scared is to get a great doctor.  get a pshyciatrist that has studied tourettes and tic disorders. they know about the medicines that can help. and they can also prescribe them. (most pshycologists cannot).
if your pshyciatrist thinks that you need a therapist or a pshycologist then he/she can refer you.
there is a lot that can be done to help as long as you have someone knowledgable about the disorder.
good luck

[DebbieSp]

thank you both for responding. We live on the coast of NC and since the tropical storm my daughter has been terrible. The twitching is not gotten worse from it but the emotional (meltdown )sorry only way I know how to describe it has been insane. She had an appt. with the pshycologist today but it was cancelled because of the storm. I was totally against meds. but this morning i realized things have gone beyond my control. She has the rage episodes where the littlest thing sets her of and she screams and cries worse than her 3 yr old brother. Sometimes it only last a few min. but this morning was extreme.She is always very sorry afterwards but I don't know how to handle it. I am sick right now. I am nausiated or vomiting alot anymore because the emotional ups and downs are so bad. I really need some advice on how to handle her emotionally. I don't know how to explain to her what is going on with her because I don't understand and everything I read online is so conflicting.Any advice on how to talk to her?And for TXmomX3 if he dosen't do it at the office which my daughter did funny though i was scared of the same thing but if the doc dosen't believe you go to a different one.Tourettes twitches from my understanding come and go and if the doc dosen't believe the childs own mother then he isn't a doc you want your child being treated by.

[AnnKr]

Hi,
I think I may be able to help since I've gone down a very similar road.  My son is now twenty, but when he was about seven  I noticed he was blinking more than normal.  I of course ignored it thinking that I was reading something into it that wasn't really there.  A few years went by and when he was twelve I noticed him doing a neck tic/twitch. (I teach in the elementary school where he attended)  and his sixth grade teacher approached me one day  and told me she thought he may have a problem. I thanked her for telling me since she brought my fears to reality.
I went into the bathroom and cried and cried.  I composed myself and called the doctor.  We were referred to a neurologist at Childrens Hopsital in Philadelphia.  Long story short.... after three neurologists and many different drugs that had many side effects, we finally found a neurologist who turned my son's life around.  (Matthew became very self conscious as a teenager etc.)  He did not have tourettes since he didn't do any kind of vocalizations but was diagnosed as having "transient tic disorder."  As I said, after many medications and many awful side effects this one doctor tried him on a drug that is used primarily for seizures but was experimented on kids with tics.  It worked beautifully!!!!!!!  The name of the medicine is Topamax and it has been a life saver.  Matthew has been pretty much tic free for eight years. He still takes the medicine but is in his second year of college now and is doing great.  I do notice when he is tired or stressed I will see him blink a bit more but over all he is 90% better and hardly any side effects.  (The only one is that Topamax can make some people feel a bit "dopey" or forgetful, but I have seen very little of this in him and he has too.)

I'm sorry this is so long but I hope it helped a little.

Best of luck to you and keep me posted if you can.

Ann

[TXMomX3]

Please post what you find out. My son is 10 and has been doing the almost the same. Initially he started with the blinking but now his eyes are also rolling back. I'm also scared. So scared I have cried twice in the past two days. My husband say maybe it's too much tv and computer but something in my heart tells me its more. He is a srtraight A, G/T student and this is not like him. I have read alot of other similar posts but no real possible causes besides the Bells Reflex one. I read a little about tourettes and I'm leaning towards that. He will see his pediatrician next week but I'm worried he may not demonstrate the symptoma dn she will dismiss my worries.