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Tics//pandas? How can I help her?

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Old 07-14-2007, 04:20 PM   #11
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I forgot to mention a couple of other things. Aside from sorting out the Strep. connection right now for your daughter, it's also quite common for girls to have an increase in tics pre-puberty or around onset of puberty and that's certainly something that happened in my daughter's case (I have 2 children, grown now, who have been diagnosed with TS when younger).

Regarding tests for GABHS, it's also my impression that one single positive test is not enough to show a relationship between the tics and the strep.. Meaning that a large proportion of the population will at some time have a Strep test and it will be positive. It's such a common illness. The really important thing is that if there has been a positive culture already and there appears to be a relationship between the strep infections and the tics, then follow-up or longitudinal measurements of antistreptococcal or antinuclear antibody titers should be done over a period of time.

There is more here regarding PANDAS.
From a practical standpoint, parents whose children seem to show a temporal relationship between infections and symptom severity can also use that knowledge to plan for their child and to take preventive measures. It's one thing to caution your child not to go near a friend who's infectious or who might be infectious, but if you know that whenever your child has an infection, they pay for it dearly in terms of their tics or OCD symptoms, then your cautions -- and precautions -- need to be increased.
This is certainly something I did with my son who is the one who had the strep connection. If a child has a Strep throat or other Strep related condition e.g. impetigo, scarlet fever etc., then the school should be notified as they're contagious conditions. In the real world that unfortunately doesn't always happen, but I had a good rapport with the school nurse who would inform me when there were reported cases of Strep related illnesses in my son's classroom.

One last thing about Strep. throats. If one person in the family ever gets a Strep. throat then others are at risk. Also, throw out the child's toothbrush. It's simple and cheap to replace and in my opinion worth it.
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Old 07-14-2007, 09:47 PM   #12
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Hi again,
Thanks for all the great info. She is 10 years old now. When she had scaret fever (I think she got it from a camp she was at that summer) she wasn't treated I dont think cause it is viral? She started out with severe rolling of the eyes. I was really worried when it first started as her eyes would go up in her head. She did have antibodies tested (if I am saying that right) and her doctor told me about PANDAS but the test came back good and he say no basically. I dont know what the levels were. She also had a MRI and cat scan and they found nothing. They just said she has a tic disorder. They talked about putting her on medication (this was 3 years ago) but I didn't want to at that time. Now last week she had strep and she was on penicillin and they were worst by 70 % I would say. I have noticed they are getting better each day and now that she is done with the medication and not sick now more.

One other time she was treated for a ear infection about a year ago and what she was treated with (I think anoxicilion) she had no tics what so ever that week. That is why I think it is pandas.
I notice when she stays busy they are less. Today we went to the beach and she had a good day. I do not talk about it much, if any at all. Like today all I said was your "eye thing" that is what we call is getting better and she agreed. I have NEVER yelled at her for it or asked her to stop. I know she can't. I find when you ignore it they are not as bad.
She also takes Karate and she goes 4-5 times a week and that also helps with it.

I am worried when school starts now though because they are more now then last year. She doesn't talk about it so no one knows. I did mention it to her teacher last year at one point and think I am going to have to this year if they continue how they are. I am going to try magnesium, maybe that will help some?
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Old 07-14-2007, 10:07 PM   #13
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Hi again,
I'm so glad to hear you had such a great day at the beach!

Just wanted to show you some information about Scarlet Fever. I know that is in the past now, but if she did have Scarlet Fever and her tics started after that, it's important that the doctor treating her now knows about the untreated Scarlet Fever from a few years ago. Not everyone who has a GABHS infection will go on to have problems or complications such as described below, but it's important to know about it.

I hope all goes well with going back to school. That must be only a few weeks or so away now, is it? I'm in Australia and our school year is different. Does your daughter have any other conditions as well as her tics, or does she only have the tics?

Scarlet fever is a disease caused by an infection of the throat with group A beta-hemolytic streptococcal bacteria (strep throat).
The treatment of scarlet fever is the same as the treatment of strep throat -- antibiotic therapy to eliminate the bacteria that causes this infection from the throat. This is crucial to preventing rheumatic fever, the most feared complication of strep throat and scarlet fever
This is the condition that my son was diagnosed with at age 5. Later at age 10 it was changed to Tourette's Syndrome and some other things. He'd had an untreated strep throat and then some weeks later developed some unusual movements of the body. It's all very complicated and a long story, but eventually they checked his heart and took him off long-term antibiotics because his heart was fine. In his case, they had him taking antibiotics to prevent future episodes of GABHS so that he would not get Rheumatic Fever again. It wasn't actually to stop the movements/chorea, it was to prevent further episodes of RF.
Sydenham's Chorea (St Vitus Dance)

EDITED TO ADD: hermom, I'm not posting this info. to scare you. That would be the very last thing I want. It's highly likely that the info. about the scarlet fever and the Chorea has nothing to do with your daughter's tics. I'm just posting it because of her history with the scarlet fever and the onset timing of the tics. It's just something that not many people are aware of in this day and age with the medical care we are all able to get. Unfortuntely, sometimes things are missed. I'm just pointing this out for that reason, as I said, not to frighten you or anything. If you've read up on Tics then you'd know immediately if any of this other info. fits or not, but as I said earlier, it is worth mentioning the untreated scarlet fever to her present doctor if she/he is not aware of it, that's all.

SC info from WeMove

Last edited by Lara; 07-14-2007 at 10:31 PM.
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Old 07-15-2007, 09:45 AM   #14
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hermom and Lara,
Thanks for all that good info. I just wanted to add also, as I mentioned, my son once had an exacerbation of eye blink and roll last year when coincidentally he said he had a sore throat and when we saw the doctor he said strep throat and gave amoxy. The tics and his very hyper behavior decreased dramatically within two days on it. He had since been tested for the antibody titers twice about six months apart and both came back negative. So I'm just mentioning this because even though definitive Pandas connection may not be obvious, I wonder if something infection related in the body still has a great effect on tics and OCD (if a person is prone to that). I still think you have to get to the root of what causes the symptoms and that seems to be a compromised immune system. So possibly strengthening that will make the body less vulnerable to such infections and thus the tics at those times.

Now, one other thing, my son does not frequently get the strep (hardly ever) so it harder to watch for the connection. The test seems to show no, so what else to do, you know? If a child gets that sort of thing frequently, and you see the symptoms rise, well, then you have to be the detective and go from there. But just the same, I say it is still necessary to strenghten and balance the body, that seems to be something that helps many.

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Old 12-07-2014, 12:30 PM   #15
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Default Flinstone vitamins were the culprit!!

Hi, I hope this will help someone reading. My daughter abruptly started with tics at 7 years old. It seemed to literally happen overnight and the symptoms advanced pretty quickly. At first it was some eye twitching, then neck and head movements, then the face muscles--be it eyebrow frowning, nose twitching, etc., then she started moving her fingers in a weird way. Needless to say my husband and I were dismayed and downright sad! I felt helpless and nobody had any answers or treatment options! Her doctor told me to monitor her for a year!! No way did I want to watch my bright little girl go through this for an entire year without being proactive in doing SOMETHING to help her. I started reading about artificial colors and dyes like Red #40 and yellow #5 being triggers for tics and Tourette's. I would literally think about this stuff in the middle of the night trying to figure out what we had done different that could have caused this. It dawned on me that the only change was about 3 weeks prior to her first tic we switched her to Flinstone vitamins. So I eliminated them and monitored her. 2-3 weeks later the tics stopped completely. Just as abruptly as they appeared they went away 100%. That is the only change to her diet that I can associate with the tic time frame. We added Flinstone vitamins...3 Weeks later she has tics. We remove them, 2-3 weeks later tics stop. It has been 7 months and not one tic. I hope this helps someone who might be as desperate as we were!
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Old 12-07-2014, 01:20 PM   #16
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Welcome to the NeuroTalk Support Groups.

Quite a high percentage of school aged children, 5 to 10 yrs, will develop a tic or tics that totally go away. I think it's around 10% although I have seen higher percentages stated. [Kaplan and Sadock - 5% to 24%]. For diagnostic purposes they used to be called transient tics but I think they're now called provisional tics.
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Old 12-07-2014, 04:11 PM   #17
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Welcome HoustonMommy.
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