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Hi Everyone!

 

My son is 10 and we've been dealing with the ups and downs of PANDAS symptoms since he was 4 1/2 (after having strep throat). We've been all over the board trying to figure out what could explain the repeated sudden onset and gradual disappearance of tics (especially in front of the TV), personality changes, foggy brain, OCD behavior, etc. Illnesses always make it worse and the reduction in symptoms is always gradual. We could not find anyone that would put a name on this until we came across PANDAS about a year ago. We had been working with a Naturopath for about 5 years that helped us eliminate systemic candida and tried to eliminate the tics, but he did not feel our PANDAS test from NeuroScience supported our PANDAS diagnosis.

 

In March, we had our son tested for food allergies and found he is allergic to wheat, gluten and dairy. We already had him off most dairy. We removed these items from his diet and in a few days he was symptom free. We thought we had finally found the last piece of the puzzle. About 4 weeks later, he got strep throat and the tics are worse than they have been in years. He is not sleeping well again and I see OCD behaviors. I am at my wits end!

 

While he does not seem sick, I wonder if he could still have strep without the symptoms after reading many of the posts on this site. Does anyone have a thought on this? Is there a test I can ask our regular pediatrician to do to find out? If the still has strep but no symptoms, maybe antibiotics could help. Any thoughts?

 

We are giving him magnesium orotate daily, B12 every 3 days and probiotics. I have also started throwing in vitamin c.

 

Lastly, I have been trying to find a doctor in our area that at least recognizes PANDAS as a real diagnosis, but I can't find anyone. Does anyone know any names or places I can use to find a doctor that treats PANDAS?

 

Thanks for reading!

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Dr. John Green in Oregon City, OR may be the nearest doc for you. I've heard from a couple of people lately that Dr. Stephen Glass, a well-respected Pediatric Neurologist in Woodinville may be starting to diagnosis some PANDAS patients. He's at least open minded.

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Thank you so much for your suggestions. I think I heard of Stephen Glass about 6 years ago when the daugher of a co-worker was diagnosed with autism. I am going to give these people a call. Thank you again!

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Hello

 

Our regular pediatrician, Dr Sharon Hemplar at Redmond Pediatrics in Redmond 425 881KIDS (sorry can't remeber what those numbers correspond to) recognises PANDAS and has been our dd's ped from birth. She is our 1st line for treatment and writes her rx for proph abx too.

 

You may want to try there. She's had our dd and one other case inthe past.

 

Good luck.

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Hello

 

Our regular pediatrician, Dr Sharon Hemplar at Redmond Pediatrics in Redmond 425 881KIDS (sorry can't remeber what those numbers correspond to) recognises PANDAS and has been our dd's ped from birth. She is our 1st line for treatment and writes her rx for proph abx too.

 

You may want to try there. She's had our dd and one other case inthe past.

 

Good luck.

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Hi Swim,

yes, your son could have strep with no symtpoms. When was the last throat culture done and what antibiotics was your son given for the strep? There is a lot of amoxcillin failure in strep. Some kids do well on Keflex, others do better on Azithromycin.

 

I would recommend getting another throat culture on your son (do the 72 hour culture if the rapid is neg) to see if the strep is cleared from his throat. (Unfortunately cultures aren't 100% since it is possible to have the strep hiding out in the sinuses where a throat culture would miss.) I would also culture family members to check for carriers. Our PANDAS dd will react when a family member has strep even though she herself is on prophylactic abs and doesn't actually get an infection (but she likely gets colonized). Our younger dd is a carrier and gets strep w/out symptoms (but will culture positive) and our PANDAS dd reacts to this.

 

Many find a 1-2 mo. trial of azith. (but definitely do the cultures first!) to be helpful (my 55 pound dd has been on 250mg since June 08). Azith. will get intracellular strep and is immune-modulating/anti-inflammatory (our immunologist thinks this may be a big reason why it is helping, not just the antibiotic effect).

 

Some PANDAS kids will also get an exacerbation with stress (blood pressure or epinephrine?) which can open up the blood brain barrier or other illnesses (my dd reacted when she got fifth's).

 

My dd also gets 200mg/advil daily...many PANDAS parents find that helps. If things are bad you could short term give it 2-3x daily (1x daily is the long term dose that the immunologist thought would be very safe.)

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Hi Swim,

yes, your son could have strep with no symtpoms. When was the last throat culture done and what antibiotics was your son given for the strep? There is a lot of amoxcillin failure in strep. Some kids do well on Keflex, others do better on Azithromycin.

 

I would recommend getting another throat culture on your son (do the 72 hour culture if the rapid is neg) to see if the strep is cleared from his throat. (Unfortunately cultures aren't 100% since it is possible to have the strep hiding out in the sinuses where a throat culture would miss.) I would also culture family members to check for carriers. Our PANDAS dd will react when a family member has strep even though she herself is on prophylactic abs and doesn't actually get an infection (but she likely gets colonized). Our younger dd is a carrier and gets strep w/out symptoms (but will culture positive) and our PANDAS dd reacts to this.

 

Many find a 1-2 mo. trial of azith. (but definitely do the cultures first!) to be helpful (my 55 pound dd has been on 250mg since June 08). Azith. will get intracellular strep and is immune-modulating/anti-inflammatory (our immunologist thinks this may be a big reason why it is helping, not just the antibiotic effect).

 

Some PANDAS kids will also get an exacerbation with stress (blood pressure or epinephrine?) which can open up the blood brain barrier or other illnesses (my dd reacted when she got fifth's).

 

My dd also gets 200mg/advil daily...many PANDAS parents find that helps. If things are bad you could short term give it 2-3x daily (1x daily is the long term dose that the immunologist thought would be very safe.)

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Hi EAMom,

 

My son did not have a throat culture with this last round of strep. Our younger son tested positive for strep in March and the next day our son with PANDAS had a sore throat. We got him on amox without having the culture done. Thanks for your email as we have an appointment tomorrow morning with our pediatrician to test for strep and we will bring your reply with us, along with lots of other info on PANDAS.

 

Interesting that you mention the strep could be in the sinuses as he has had one bloody nose just about every day for the last 2 weeks. Prior to this, no history of blood noses. May not be related at all, but something for us to look into.

 

Really appreciate your info! It gives us some direction to take with the doctor tomorrow.

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Hi Swim,

 

my PANDAS dd also has gone through phases where she's gotten a lot of bloody noses. Last June she had them daily for 1-2 weeks...about the time we started the advil/azith. I didn't know if it had anything to do with PANDAS. She's had a few more recently this spring. Sinus infection? allergies? OCDish behavior causes nose picking? stuffy nose?

 

Anyway, here's a link on amoxcillin failure in strep throat http://www.entrepreneur.com/tradejournals/.../169459644.html

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Hi EAMom,

 

Good trip to our pediatrician this morning. Turns out she is the only doc in the practice that believes PANDAS is a real medical condition and she is treating 3 other kids. We were armed to educate her, but she was already on board.

 

Looked in our son's nose and said there was definately some sort of infection. Not yet sure if it was strep or not, but we are moving forward on antibiotics. My son doesn't have any allergies that affect sinuses and his OCD doesn't involve nose picking. Looks to be either sinus infection or strep in the sinus.

 

She also ran a number of blood tests. Looking forward to finding out the results of the tests and seeing what happens once we get him on the new antibiotic.

 

Thanks for mentioning the sinuses!

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