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Yep, us too. Our PANDAS son came home from school in March 2007 with an extremely high fever (104), shaking and aching all over. The school told us that flu was rampant, so we thought that's all it was. He had no sore throat, no classic strep symptoms. Two weeks later, the rheumatic fever symptoms started (migratory polyarthritis, headache, muscle weakness, difficulty walking). Six weeks after that, the Sydenham chorea symptoms hit (seizure-like episodes, emotional lability, cognitive fog, extreme sensory defensiveness). His ARF/SC diagnosis was changed to PANDAS in 2008.

 

That original "mystery illness" was all the way back in 2003, though, in Ohio (near Cincinnati).

 

 

Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around.

 

Anybody else manifest on that timeframe??

 

 

Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

 

My dd10 had a turning point episode in March of 2007, from episodic to chronic and I always thought that was myco-p piling on the scene as she had a long, persistent cough the end of Feb beginning of March; it lasted weeks, no fever. But PANDAS started years before that for her.

 

AND Worried Dad-LOVE your photo!

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Worried Dad; Mary M; Tenacity; Others…

 

The symptoms you are describing in your children mirror the classic presentation of lyme disease: A flu-like illness, followed by (immediately, or months or years later) a cascade of symptoms. And the symptom list is long and wide-ranging. Those of you whose children suffer/suffered from body aches and pains should particularly consider lyme or similar infection. (but body aches need not be present to be considered for lyme. Sometimes it is only neurological symptoms).

 

Unless you were seen by a lyme specialist, and tested from Igenex labs, I would discount any “negative” for lyme you have been told. PLEASE, PLEASE, PLEASE get the proper testing and the advice of a knowledgeable doctor. If you have seen positive results from antibiotics only, this is also a possible indication of lyme or similar infection. But it is imperative to be under the treatment of a lyme specialist – they are experts in providing a combined antibiotic protocol, at the correct dosing schedule, that will enable your child to move into recovery.

 

Contact ILADS for doctor referral:

http://ilads.org/

 

Or post here under “seeking a doctor” for your specific state, and people will give you doctor referrals: (LLMD stands for Lyme Literate MD)

http://flash.lymenet.org/ubb/ultimatebb.php

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Our child had a mystery illness too. He had a high fever, red face and tongue thrusting. They told us to bring him to the ER because they thought it was Kawasaki disease, but then they decided it was just a mystery illness. But that was in 2001 in New York. Several months later the tourettes symptoms really started.

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Yes, this was the time frame for us too! My daughter's first devastating event was in late 2006-early 2007. She had a VERY rheumatic fever like illness with migratory joint pain, fever, abdominal pain and nausea, nosebleeds, heart murmur, palpitations,confusion, sensory problems, handwriting deterioration, and SEVERE fatigue. She was sick with this for many months. It happened again in 2009, but our new pediatrician figured out she had strep after it had been happening for a few weeks.

P

Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around.

 

Anybody else manifest on that timeframe??

 

 

Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

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My dd also got PANDAS in the late summer/early fall of 2006. Hmmmm...

Angela

 

Yep, us too. Our PANDAS son came home from school in March 2007 with an extremely high fever (104), shaking and aching all over. The school told us that flu was rampant, so we thought that's all it was. He had no sore throat, no classic strep symptoms. Two weeks later, the rheumatic fever symptoms started (migratory polyarthritis, headache, muscle weakness, difficulty walking). Six weeks after that, the Sydenham chorea symptoms hit (seizure-like episodes, emotional lability, cognitive fog, extreme sensory defensiveness). His ARF/SC diagnosis was changed to PANDAS in 2008.

 

That original "mystery illness" was all the way back in 2003, though, in Ohio (near Cincinnati).

 

 

Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around.

 

Anybody else manifest on that timeframe??

 

 

Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

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we thought our 17 yo because symptomatic at 15. But, now we are dating it back to, at least 1st grade (after the OCF conference, I found a writing log, and lo and behold...sudden really bad handwriting, including margin drift.) He also had stomach surgery at 6 yo, because his "tummy" had been hurting for 2 years, and it turned out it he had almost burned a hole in his intestines. Also, he had an allergic reaction to the MMR vaccine (hives). He has asperger's, too, and really started having trouble in 1st or 2nd grade.

 

Yep...there's a lot we don't necessarily see.

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My timeline is a little, well, screwed.

We suspect initial onset to have been at two years old - 1997.

After eight years of unnoticed episodes, I believe I went chronic when I was ten - late 2006.

Actual diagnosis - 2008.

 

My parents say that I've had two minor motor twitches since the day I could talk.

-Mouthing what I say right after I say it. People have thought that this is a compulsion, but I am NOT aware of it at all. (Still)

-Lip twitches. Curling up like a smile, but then spazzing out.

 

My arly compulsions weren't really disruptive, either.

-The number three. Many little subcompulsions. (Still)

-NOT matching clothes.

-Getting shoelaces "JUST right". (Still)

 

As of 2006 (& up until 2009) I had NEVER ONCE had a negative strep test (specifically with high GABHs). I was completely & totally asymptomatic every single time, so we had no idea if & when I had strep. It was & still is just generally assumed that I ALWAYS do. None of my initial symptoms were even seen as symptoms, just quirks, & couldn't be tied to any strep since we were never sure of when I had it. My only guess as to the episodic-chronic transition is that I must have been exposed to that one strain of strep at school & it was the straw that broke the horse's back.

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