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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

Quote:

IS THERE A CASE FOR IMMUNOMODULATORS?
Because the postulated mechanism for a PANDAS syndrome implies an immunologic dysfunction, therapeutic trials have attempted to modify the effects of an immune response. A published study involving 29 patients fulfilling suggested criteria for PANDAS reported sustained benefits both after plasma exchange and in patients after intravenous immunoglobulin.28 However, Singer,29 in an accompanying commentary, pointed out numerous methodologic concerns about the trial including highly selective recruitment, small sample size, lack of severity matching within treatment groups, limited comparisons with controls, absence of sham apheresis, concomitant use of psychotropic medications, possible treatment-order effects, and adverse effects that occurred in approximately two thirds of subjects receiving active treatment. A subsequent note of caution was issued in 2000 by the National Institute of Mental Health recommending that, at this time, plasma exchange and intravenous immunoglobulin be reserved only for subjects participating in approved research protocols because there are distinct risks involved.30 To date, there are no additional published data to encourage use of these immune-modifying techniques.

From NIMH - PANDAS [Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections] Information.

Quote:

Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)?

A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions. However, there were a number of side-effects associated with the treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedure, such as these. Thus, the treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. The NIH is not currently conducting any trials with immunomodulatory therapies, and so is not able to offer either or the treatments.

Of note, a separate study was conducted to evaluate the effectiveness of plasma exchange in the treatment of chronic OCD (Nicolson et al: An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. "J Am Acad Child Adolesc Psychiatry 2000," 39[10]: 1313-1315. None of those children benefited, suggesting that plasma exchange or IVIG is not helpful for children who do not have strep. triggered OCD or tics.

http://intramural.nimh.nih.gov/pdn/web.htm