Tics//pandas? How can I help her?
 

Hi, My daughter is 10 years old. She started having tics at 7, first day of 2nd grade. Before this she was the smartest kid in her class, they wanted to have her skip 1st grade, she was always "on the ball"....Since she started having tics she struggles in witting, gets car sick, and is very forgetful.

She started the tics about a month after she had a bad case of scarlet fever!!! They have been mild after that, but now last week she came down with Strep and they have increase 75 %!!!! I am so stressed and depressed cause I want to help her and I can't. It is breaking my heart. Her Tic is eyes rolling up in her head, constantly! She also holds her belly in and out (fast) a lot. The kids are noticing it this week at camp.
I am just waiting for them to get better. :confused: I am PRAYING they get better again (mild is fine) before school starts up.

Her DOC just says she had a tic disorder. I think it is pandas but I dont know. I was reading on Plasma exchange, anyone familiar with this?

Also, what food should I take out of her diet, something has to help? Vitamins? Right now she takes Flintstones...Should I stop them?

Hi & Welcome hermom33,

I'm sorry to hear that your daughter is struggling with tics right now. I'm not a PANDAS expert, but hopefully Chemar and others will be along with some links.

There's lots of good PANDAS information on: http://www.latitudes.org/forums/index.php?showforum=1

Your daughter's case of tics sounds like PANDAS, but here are some diet tips that people have found helpful for tics. Artificial flavorings, colors, and preservatives are good things to take out of the diet. Dairy, Gluten, Chocolate, Sugar, and Caffeine are common tic triggers. You can find many more tic triggers on this page: http://www.latitudes.org/articles/finding_triggers.htm

I would suggest removing the Flinstone vitamins because they have artificial flavors in them. It may be helpful to find a multiple vitamin with natural ingredients. Can your daughter swallow vitamins?

Carolyn

Here's one great thread about PANDAS, but there's many more great ones that you can find by doing a search on the forum for PANDAS:

Useful Info on Strep Infections from Ronna
http://www.latitudes.org/forums/inde...=374&hl=PANDAS

Can your daughter swallow vitamins?>>>>


No, she can't. :( Any other suggestions since she can't swallow vitamins?
Thank you for replying, I hope to get many more. I will check out the links you sent me too.

She had a better day today then yesterday, I am trying to keep her busy and play lots of games and hang out. If she is bored they are much worst, TV forget it!!!! That is when she does it the most.

She loves water and drinks that most....If we should cut out dairy, how would she get her calcium and D?

hi hermom :)

Carolyn has given you some good links there, although, as she mentioned, the Latitudes forum had a pretty bad crash and so is currently only showing a read database..........still there is a ton of information there on PANDAS as well as many other aspects of TS and tic disorders

It really would be worthwhile IMO to have strep blood titres tested in order to check for possible PANDAS, especially with your daughter's history of scarlet fever and strep
here is what the NIMH says re PANDAS/scarlet fever/strep
http://intramural.nimh.nih.gov/pdn/web.htm




The only reason to avoid dairy would be if your daughter is found to be lactose intolerant or with allergy/sensitivity to dairy products...otherwise they are fine as is any other natural food group.
Artificial food additives however really are best avoided as they have a well documented trigger effect on tics

hope that helps a bit

Hi, I was at that board and having trouble posting and replying, I see why now. Thank you.

What should I look for to avoid Artificial food additives? Like what foods?
She never drinks soda, and eat rather healthy. She is not hyper at all, if anything she could be more hyper. lol

Do you have a list of food/drink to avoid? I am clueless when it comes to this.

Should I start her on fish oil? Have you seen a decrease in tics with it?

hermom33,

I'm not really sure what to suggest for vitamins. It might be good to check out the blood work for PANDAS first. I feel that it's good to try and find a doctor to help guide you with the vitamins. There are several chewable/liquid/powder multiple vitamins. Here's some websites that I'm familiar with:

http://www.kirkmanlabs.com/index.html
http://www.needs.com/
http://www.iherb.com/Default.aspx

There's also been some discussion about Peter Gillham's Natural Calm magnesium supplement:
http://www.latitudes.org/forums/inde...9&hl=Kids+Calm

I'd be careful with fish oil. For some fish oil helps, but for others fish oil increases tics. I'm one that fish oil increases my tics. I do better with flaxseed.

Carolyn

hermom

the artificial additives that seem to cause an increase in tics are the food colorings (red40, yellow5 etc etc) artificial sweeteners like aspartame/nutrasweet & sucralose/splenda as well as MSG, high fructose corn syrup, BHT and other similar artificial preservatives, plus many other artificially made food additives.

so much processed and packaged/canned food has these in nowadays ):

What has been anecdotally documented re PANDAS/PITANDS kids is that, although supplements and good diets etc all are beneficial, yet, until the microbes are eradicated, the cycle of illness/tics persists.
There is still controversy over the whole subject of PANDAS & PITANDS, but we have had many parents reporting remarkable results (decreased tics, OCD etc) after prophylactic treatment with azithromycin(zithromax) after strep titre blood tests have indicated high antibody counts. Not all conventional doctors are knowledgable, and/or in agreement with this type of treatment and so you may need to find a good DAN, Integrative, Environmental or Naturapathic physician to help with this. I personally always try for a doc who is trained conventionally (MD or DO ) and has then gone on to specialize in Natural aka Alternative Medicine too. They just seem to have the right holistic balance, and one does have to be very careful of fringe practitioners who may be touting wonder cures for high prices!

as to supplements, again this is something that should be done carefully, as different people have different deficiencies etc

The one thing that really does seem to benefit people with tics is magnesium BUT again it should always be given in a balanced way with other supplements
Many parents of younger kids have been very pleased with those Natural Calm and Kids Calm powdered magnesium drinks as that is easier for younger kids to swallow

Hello Hermom33,
How old did you say your daughter was? What kind of medication did she take when she had the scarlet fever? I just tend to think that any kind of assault on the immune system can trigger the tics, I just think that strep is the one they can pinpoint and measure for, but there probably could be many things messing up one's immune system. .... Soooo, having said (or thought) that, whatever you could do to strenghten the immune system, I think, is what seems to be beneficial. That means, bad stuff out, good stuff in -- whatever that is for her.

My son is eight and has tics, but so far since we have embarked on removing food he is intolerant to and adding supplements like magnesium, some minerals, probiotics, etc., he is doing pretty well. He didn't seem to have the issue with pandas, although I have seen an exacerbation one time when he did have a strep throat.

So, you will have to do some detective work to see what kind of things seem to help your daughter. Start with the magnesium supplement that many like, the Natural Calm (that seems to help some with eye tics) and if you can see a naturopathic doctor to give you some guidance, the money will be well spent. Also the water drinking is good, that helps with moving toxins out. So anything along those lines are a start.

Faith

Hi there. Just want to add several things...
It is interesting that your daughter's tics began a month after she had Scarlet Fever. I'm wondering if she was treated thoroughly for that and wondering what type of doctor you're seeing and if they're one who is familiar with Movement Disorders generally?

One of the most important things right now is to make sure your daughter isn't scared about the exacerabation of her tics. It is natural for tics to wax and wane too. Many people find they have increased tics with an illness and others describe increase in tics after an illness. It seems to vary. If adding medications, whether they be natural or otherwise, the important thing to me is that your daughter isn't made to feel as if there is something seriously wrong with her. It's important for her general wellbeing to stay as calm as possible and ignore the tics even if you're worrying sick about why they're occurring. It's natural to worry. We all do, but it's also important not to go on an all out crusade to remove tics as if they're caused by something really serious. Just my opinion. I know others don't share my opinion. I just remember how it was for my son, before we knew about Tourette's. He was treated by his doctors as if he was very ill with something and in hindsight I swear it made things much worse for him.

Regarding Plasmapheresis...
Plasmapheresis is a procedure that involves partial removal of blood plasma while the blood cells are returned to circulation. That's something I looked into here where I live many, many years ago when I heard about it because my son had been diagnosed with something called Sydenham's Chorea which is a movement disorder which occurs in some people after they have had a GABHS (STrep) infection and subsequent Rheumatic Fever. It is a little different from tics, but for doctors who have not seen SC before, it can be confused with that particularly in light of positive strep. titres. Anyway, plasmapheresis is not something that is recommended by either the TSA-USA or the NIMH.

__________________

PEDIATRICS Vol. 113 No. 4 April 2004, pp. 883-886
SPECIAL ARTICLE
The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Etiology for Tics and Obsessive-Compulsive Symptoms: Hypothesis or Entity? Practical Considerations for the Clinician
Roger Kurlan, MD and Edward L. Kaplan, MD

From NIMH - PANDAS [Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections] Information.
http://intramural.nimh.nih.gov/pdn/web.htm

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.
http://www.tourettesyndrome.net/pandas_overview.htm
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.

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?

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?

http://www.nlm.nih.gov/medlineplus/e...cle/000974.htm
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.
http://www.nlm.nih.gov/medlineplus/e...cle/001358.htm
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.

http://www.wemove.org/syd/
SC info from WeMove

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.

Faith

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!

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.

Welcome HoustonMommy. :Wave-Hello: