Tics//pandas? How can I help her?

Lara · 07-14-2007, 03:23 PM

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

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