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ok. so i am looking for advice please. i normally post on the TS forum, but thought someone over here might be able to offer up their opinion. just a quick bit about my daughter with tics! she is 6 years old. had some eye blinking last summer when she was 5, went away after a few weeks. really didn't think much of it, we thought it was becuase she just started swimming and it was the chlorine. well, 1 year later, again after the swimming started she had eye blinks again. thought must be that darn chlorine. but then came the neck stretching, the nose scrunching, the head shaking, the mouth sretching, sniffing, and now we have throat clearing and an arm flapping thing. Now, these are not all together, she will have a couple and then replace them with new ones, and for the most part htey are all unnoticeable. well, of course, i notice them all!!! i have had a few tics as long as i can remember...mine really haven't changed too much over the years. and to be honest they really do go unnoticed, if anything, someone may think i have allergies if i am clearing my throat alot. but most of the time i am tic free.

 

so, i have been reading and researching and CRYING thinking i have TS and i never even knew it and know i passed it on to my children. but after reading and trying to find something to stop my daughter's tics, i came across PANDAS a few months ago. well, i can't help but want to explore this b/c right before the tics, the many tics that started in late May, my dd had tested positive for strep. she had antibiotics and then steroid shot after that to help get rid of it. strep was in april in think. so, my ped. brushed off PANDAS b/c i myself had tics here and there growing up.

 

NOW, my youngest duaghter, 4 years old-no tics- had ear infections last week and bad sore, red throat. she tested negative for strep. but we were going out of town that same day, so the LPN at the clinic(could not get in with reg. ped.) gave her a 5 day azithromax prescipiton to clear up ears and any possible strep. she went ahead and gave me a prescription for my 6 year daughter with tics just in case she started any sore throat symptoms while out of town.

 

SOOOO, i have been wanting to give my daughter with tics the antibiotics, but i am scared to. she is not "sick" right now. her tics are very mild...few throat clears a day, and some arm stretches throughout the day(unless she watches TV, then facial grimacing and neck stretching come back)....so should i just give her the antibiotics???? it is only a 5 day presrciption. could it help it if this is PANDAS, or would 5 days not really do any help anyways????? thnaks for any advice!!

 

Julie

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I would just give her the abs. But, you are right, you might not notice a difference after 5 days. You could also add on some advil, that helps.

 

For us, tics were the last symptom to go away. Mood/ocd improved first. But, everyone is different.

 

Also, would it be possible to get your 6 year old throat cultured before starting the antibiotics? A neg. test doesn't mean she's not going to be helped by the Azith. But, a positive test would be a clue to make sure she clears (is neg.) 3 weeks after the last Azith. dose.

 

Also, consider a Cunnigham test in 2011 when the lab reopens. This test is pretty good at differentiating PANDAS form non-pandas tics.

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thanks for the input! the cunnigham test, do you have an idea about how much that costs and is it a blood test or urine or both??? again, thanks! also, she was swabbed for strep again in august after all this started in may b/c she got a yeast infection out of nowhere...her ped. said it could be strep, so she swabbed her throat, did 24 hour culture and it came back negative...so i was left confused again on the PANDAS idea???? does she need to have active strep infection for PANDAS????

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The Cunningham test is still in the "research" phases, but she has an open trial, and it is definitely becoming quite well accepted by many of us PANDAS folks. For my family, it made the final differentiation between bipolar and PANDAS (we also ruled out bipolar by trying meds that didn't work,) but the doctor finally accepted PANDAS and treated it as such, because of the Cunningham test results. I am very glad I did it, and spent the money, because now we are as certain as we needed to be to go in the PANDAS direction, and are getting him the help he needs.

 

The test costs $400, but it is a donation (to the OU Foundation,) so it is tax deductible, and the end cost is considerably less.

 

Personally, I'm very glad we did it...it cleared up any doubts in ours and our doctor's minds.

 

Good luck, and keep in mind that you might have had PANDAS, and that's the cause of your tics.

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EAMom---I keep seeing this written, "This test is pretty good at differentiating PANDAS form non-pandas tics" but I have yet to have a doctor confirm this. Can you please explain to me?? I can send you my daughter's results if that will help...thanks!

 

I would just give her the abs. But, you are right, you might not notice a difference after 5 days. You could also add on some advil, that helps.

 

For us, tics were the last symptom to go away. Mood/ocd improved first. But, everyone is different.

 

Also, would it be possible to get your 6 year old throat cultured before starting the antibiotics? A neg. test doesn't mean she's not going to be helped by the Azith. But, a positive test would be a clue to make sure she clears (is neg.) 3 weeks after the last Azith. dose.

 

Also, consider a Cunnigham test in 2011 when the lab reopens. This test is pretty good at differentiating PANDAS form non-pandas tics.

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tpotter---who is your pandas doc?? dr.latimer was not convinced pandas with a camK of 168, ocd for two years, a few tics this spring after pneumonia, then sudden onset of over a dozen tics after a high fever in june---and still ticcing like crazy. got the antineuronals too...can send to you if you might be able to explain...thanks.

 

The Cunningham test is still in the "research" phases, but she has an open trial, and it is definitely becoming quite well accepted by many of us PANDAS folks. For my family, it made the final differentiation between bipolar and PANDAS (we also ruled out bipolar by trying meds that didn't work,) but the doctor finally accepted PANDAS and treated it as such, because of the Cunningham test results. I am very glad I did it, and spent the money, because now we are as certain as we needed to be to go in the PANDAS direction, and are getting him the help he needs.

 

The test costs $400, but it is a donation (to the OU Foundation,) so it is tax deductible, and the end cost is considerably less.

 

Personally, I'm very glad we did it...it cleared up any doubts in ours and our doctor's minds.

 

Good luck, and keep in mind that you might have had PANDAS, and that's the cause of your tics.

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Hi eljomom,

so what did Dr. Latimer think your son had?

According to Dr. Cuunningham, Lyme can also elevate CamKinase. Or did Dr. Latimer think your son was non-PANDAS tics?

 

But, if you look at this paper (see figure 3b) non-PANDAS tics ranged (Cam kinase ll) from 50-110. PANDAS ranged from 100-200. So your son isn't even in the "grey zone" (100-120) where it could possibly be either.

 

http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

What did she recommmend for your son? Is she doing an antibiotic trial?

Edited by EAMom
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EAMom--she wanted to run the Igenix and wait for antineuronals. Said they mean more to her than Cam K. It's funny, as we were discussing her history, she was talking about getting the dog tested, etc. Then she saw Eva, and the few minutes she was with her, Eva didn't tic!!! Then she had her draw a butterfly and write her name. She said that her handwriting and drawing aren't horrible, and that pandas kids have horrible handwriting. Didn't RX abx. Said we could talk after she gets results. I talked to Dr. Cunningham, who said abx would be worth trying based on her high CamK, and so I e-mailed Dr. L, who said sure. So we've been on Augmentin for almost 4 weeks. I thought about 5 days ago that her tics seemed maybe less. Not as much stringing them together, and more of the mouth, tongue, eyes (facial stuff) and arm stretching. But yesterday was worse, and today has been through the roof! My son woke up today with horrible stomach ache, threw up, and has had diarrhea all day. It's a stretch, but could that be causing any of this? IF so, what are abx doing, since this is viral??

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thanks for the input! the cunnigham test, do you have an idea about how much that costs and is it a blood test or urine or both??? again, thanks! also, she was swabbed for strep again in august after all this started in may b/c she got a yeast infection out of nowhere...her ped. said it could be strep, so she swabbed her throat, did 24 hour culture and it came back negative...so i was left confused again on the PANDAS idea???? does she need to have active strep infection for PANDAS????

 

No, she does not need active infection for PANDAS. Exposure to strep is enough to cause her to produce the antibodies and its the antibodies that are the problem in PANDAS.

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EAMom--she wanted to run the Igenix and wait for antineuronals. Said they mean more to her than Cam K. It's funny, as we were discussing her history, she was talking about getting the dog tested, etc. Then she saw Eva, and the few minutes she was with her, Eva didn't tic!!! Then she had her draw a butterfly and write her name. She said that her handwriting and drawing aren't horrible, and that pandas kids have horrible handwriting. Didn't RX abx. Said we could talk after she gets results. I talked to Dr. Cunningham, who said abx would be worth trying based on her high CamK, and so I e-mailed Dr. L, who said sure. So we've been on Augmentin for almost 4 weeks. I thought about 5 days ago that her tics seemed maybe less. Not as much stringing them together, and more of the mouth, tongue, eyes (facial stuff) and arm stretching. But yesterday was worse, and today has been through the roof! My son woke up today with horrible stomach ache, threw up, and has had diarrhea all day. It's a stretch, but could that be causing any of this? IF so, what are abx doing, since this is viral??

 

Yeah...and not all kids respond to Augmentin...some respond better to Azith. (maybe b/c it is immune modulated/anti-inflammatory, or gets mycoplasma, or intracellular strep) or other abs.

 

I also believe that she can react to illness in the household...not a stretch IMO.

 

Have you tried advil?

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