virus and repetitive hand movements

[michele]

My four year old had strep three years ago that exploded into blinking eyes and finger twitches. We saw several

neurologists. They did not seem too concerned due to his age and the fact that the symptoms disappear over time. They gave me literature on PANDAS.It seems everytime he gets a fever or virus the symptoms return. He also gets bad behaviors and cries easily and acts hyper after flu with fever or strep. Now he had strep again a month ago. They gave him a shot of penicillin which helped him get better in a day. Then he had flu and a fever a few weeks ago then all his symptoms came out again. Now he is pressing his fingers against his cheeks repetitively. He bends his fingers back often too. He has been hyper. He can be relentless when it comes to getting his way. He gets very moody. I took him to he pediatrician who said he may have mild

ocd or hyperness. She said because of his age there is little to do medically. She thought because the symptoms have gone away before they should again. The strep culture was negative. She did not give him an antibiotic. She told me to stay in touch. He is still pressing his fingers to his cheeks today so I called the neurologist at Cleveland Clinic. I can get in next Thurs. Can someone give me advise on how to approach the PANDAS testing, most DR. don't want to give antibiotics if no strep infection is present. What about food sensitivity? Do I need to see an alergist for testing? Any advise?

michele

[Ronnas]

I posted this on another thread...thought I would put it here also. You may want to show it to your doctor.

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE.

Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland 20892, USA. sniderl@intra.nimh.nih.gov

 

BACKGROUND: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. METHODS: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. RESULTS: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p<.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p<.01]. CONCLUSIONS: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup

 

 

Others can give more info re: food sensitivities etc but for us antibiotics were not the only answer, changing my son's diet to eliminate casein (milk), corn, and eggs certainly helped, along with limiting TV, video games etc. This was a few years ago. He is doing really well now, he is 10 years old, tolerates milk (although I still would not give him lots, for example, he had egg nog over Xmas and of course he started ticcing, but now he is ok with having milk in his cereal, cheese pizza etc...a few years ago even a little bit and he would tic, become hyper etc)...anyways, I would also recommend Sheila Roger's book, and other books like, "Is this your child" by Doris Rapp

and the this book...it was one of the first I ever read when my son began to tic etc... even though my son does not have autism, it really inspired me as it made me realize there was alot I could do for my son in terms of diet etc

 

http://www.amazon.ca/Unraveling-Mystery-Pe...TF8&s=books

[patty]

Ronna,

 

You said your son is doing well now. Is he on any supplements now? or what helped him? or did he outgrow some of his sensitivies over time?

 

My son has been ticcing for 9 months. He is doing much better now by changing his diet, restrict TV viewing (LCD and no flashing or flickering cartoon), no video games,... It is hopeful to know that some kids can outgrow tics.

 

Patty

[Chemar]

Patty, not sure when Ronna will check back in but her son has PANDAS and, in addition to supplements (I think she uses Bonnie's, or at least I know she used to) he has been on prophylactic antibiotic treatment for some time (most recently very succesfully on azithromycin=zithromax)

She also watches diet, environmental triggers etc.....

 

 

 

~~~~~~~~~~~~~~~~~~~

 

Michele...just wanted to welcome you and say that you have found a great place here for excellent info on PANDAS indiced tics, which is what it certainly sounds like your son has.

 

all the best and just keep asking questions....people like Ronna and Alison have a lot of knowledge and experience re PANDAS

 

Cheri

[patty]

Happy new year Chemar! And thx for the info.

 

Patty

[michele]

Patty, not sure when Ronna will check back in but her son has PANDAS and, in addition to supplements (I think she uses Bonnie's, or at least I know she used to) he has been on prophylactic antibiotic treatment for some time (most recently very succesfully on azithromycin=zithromax)

She also watches diet, environmental triggers etc.....

 

 

 

~~~~~~~~~~~~~~~~~~~

 

Michele...just wanted to welcome you and say that you have found a great place here for excellent info on PANDAS indiced tics, which is what it certainly sounds like your son has.

 

all the best and just keep asking questions....people like Ronna and Alison have a lot of knowledge and experience re PANDAS

 

Cheri

Thanks for the information. His pediatrician seems clueless to the strep/viral/tic connection. I asked her to check on the step culture she sent in last week for antibodies and she went on about how the neurologist had never sent her any info on the strep cultures they had done. She kept saing the hyperness and talking about his privates is typical boy behavior. I think she feels he is too young to treat with anything. I asked her if she thought he should be on anantibiotic and she said you don't want to give him one if the strep was negative. Her nurses look at me like I am from mars when I try to explain his problems.

Is this an unusual thing for a kid to get?