Ugh, another one of my kids has started to tic

[HT's Mom]

I'm just curious - I have a child with PANDAS, who originally started with Tics, diagnosed as Tourettes, of course, then OCD. Turned out to be an undiagnosed strep infection and PANDAS - treated with antibiotics and virtually all tics and 100% of OCD behaviors went away.

I just happened to look at this forum and started wondering if you parents with children starting Tics check strep and rule that out?

Hi HT's Mom, we personally have looked into PANDAS but our son does not fit the criteria and we do have a family history of Tic Disorder. My husband and his uncle both had undiagnosed Tourettes or Chronic Tic Disorder. My son did have strep many years back but his tics were present prior to the strep and my girls have not yet had strep at all. For us it seems to be a hereditary thing, what pulled the trigger I can't say...our son is doing well on dietary changes and a good multi and Natural Calm, may be time to look for food issues with the girls next. Our first clue that something wasn't right was his reactions to antibiotics and any and all over the counter meds. eg. Baby Motrin etc. and his reactions when immunized, he had some form of reaction every time, his baby sister seems to be similar and she is the one who seems to be developing some form of transient tic. For now we have to just wait and see.

 

Megan

 

 

Hi Megan,

Thanks. It is very interesting how closely all these disorders are either connected or look alike. I wish you great luck - I know how frustrating and painful it can be. Interestingly, we had some minor tics in my dad's side of the family - many family members- so I thought that TS was the answer at first. Then one aunt with Tourettes told us she had rheumatic fever as a kid, which started my on the whole strep path.

 

Do you feel that other TS/OCD parents on your forum generally know to check for Strep or try ABX? So many doctors don't know to run the basic tests. I know it is not the answer for all or even most, but I would hate to think there are kids that could be helped with this that haven't had PANDAS ruled out.

Good luck, HT's Mom

Edited February 4, 2011 by HT's Mom

[mommyfor4]

Hi again,

I would like to think that most parents consider both avenues as the forums overlap quite a bit. I know many parents on this forum are aware of PANDAS/PITAND and most of us have not had much help with conventional dr.'s, so some of our kids are not "officially' diagnosed. This is a great forum for advice and brainstorming and bouncing ideas and what works and doesn't...so that said...there could be undiagnosed cases of PANDAS but not for lack of people discussing the possible causes of tics, IMHO

Thanks for your well wishes and I return them as well. As I said the sharing of info. is what has brought many of us to the places we are with our kids today and has been such a support and guide.

 

Megan

[mythree]

Hi HT's mom.

I have often wondered about there being a PANDAS connection. Especially when my youngest started to display tics as well, and it was around the same time my oldest daughter started have a flare up of tics and OCD type behaviours. I wondered if they both were harbouring some sort of infection. I brought it up with out traditional pediatrician and she totally brushed it off. The integrative doc we see is going to explore it at the next appt. We tried the candida route last appt, and she did the medication for that - but it had no effect at all. Unfortunately the integrative doc is sick and on medical leave for awhile - so we are kind of left on our own for a bit.

 

The whole family ended up getting sick and then coming down with the stomach flu and feeling bad for awhile. Now we are all better and my oldest is doing really really well again. So is that a tic flare due to an illness? Could that happen -= when their immune system is weakened they have flare ups?

[Cristo-Krista]

On 1/27/2011 at 1:13 PM, evol said:

My situation is probably unique. Yes, I have undiagnosed ts. Well, I saw a doctor once at age 21 and he prescribed clonidine. I took it for a while but it made me soooo tired that I just quit. Started ticcing around 7 and turned into full-blown ts around 14. It was never really addressed growing up other than my parents telling me to stop. I think they were just too embarrassed by the whole thing. They would threaten me by saying "if you don't stop by the end of this year, we are taking you to the doctor". I didn't want to be labeled as different or come to terms with the fact that there was something really wrong with me, so that scared me. I don't think that's all bad, however. I was very social and fine with my peers and am sort of glad I didn't have that "label". My late teen years and college were the worse, probably from stress. Sharing a dorm room was very difficult without having any privacy. I tried my hardest to control it and don't think I would have so much if it was out in the open and I think my symptoms would have been more rampid. I think it's an aweful and bizarre disorder to have in that you appear normal but have to contort you body in ways so you "feel" normal. It's been personally a difficult journey but in all actuality, I get along fine, aside from a small social anxiety issue. Nothing a glass of wine can't fix. My husband's mom has a chronic tic that comes and goes and his brother has chronic tic/OCD issues and my husband has some compulsive issues. None of them ever talk about it either. My husband's point of view is that everybody has something and no big deal. I don't think he knows how bad it can get and that's where I feel like I'm carrying all the stress, anxiety and burden. Even though he was with me since high school and has seen me for who I am, I've never talked about it with him so he has no idea what I've really gone through. I've gone on so long without talking about it that is seems like I have this huge secret. This forum is the only place I've ever talked about it and it feels so good knowing there is support out there. I keep waiting for the day that I have to have the "big talk" and I have no idea how he'll react. I think that is why, for me, the stress is doubled because I not only have to deal with my children's issues but the role I play in all of it. At this point, I don't even care about myself, I just want my kids to be healthy. I would take on symtoms a million times worse if it could spare them. I haven't ever mentioned the ticcing to my dd. I don't want to make her self-conscious about it and right now it's managable. It it worsens, then I'll deal with it then. Since my symptoms didn't worsen until I was 14, I'll be hanging on for a while. I struggle every day with the question of was it right to have children knowing I could pass this on to them. It's a gamble and 20 years from now I can better answer that.

Thanks for sharing.  Our teen son won’t about it.  He gets upset when I start to talk about it.  Diet or vitamin talk in connection w talking about tics bothers him. 

Did you used to hold them in throughout your life or not ?