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Posted

Mine doesn't, but yes, I remember from the book that Sammy did as well. It was the first thing I thought of when I saw the title of your post.

Posted

Does your child bend over frequently while walking? For how long? My son bends over and extends his arms behind him for 5 or 10 steps (you could almost imagine he's 'flying like a super hero') He's only 5, and does imagine frequently but I think it's a PANDAS thing. It seems to occur in weeks when we see other behaviors also. Didn't Sammy do that also? I think Beth Maloney described it as walking like an inverted letter "L".

 

Yes - my son did this when he was 6 years old. It only lasted a few hours for us. We were staying with friends who lived in an old home. We went to a carnival and he spent the entire time taking 3 steps then bending forward.. then 3 more steps then bend forward. It was painful to watch him. I ended up carrying him most of the day. Later that day he did a neck - stretching/ twisting tic and said he was having trouble breathing. It was horrible. We left the next day to head home and after a few hours in the car air conditioning all the tics and twitches just stopped. It was so odd.

 

In retrospect, my son was having a great deal of trouble at the time. He was harboring bacteria in his tonsils and was living on high-dose augmentin, which was barely keeping his infection at bay. His sinuses were a mess and his allergies were out of control. We were not using probiotics or antifungals at the time and he had been on augmentin most of his life.. so I am sure all of his systems were a yeasty mess.

 

We later discovered that the friend had mold in her house (Like about 6 months after this incident she had total mold abatement that took many months on her 100+ year old home). I think the combination of underlying infection and underlying allergy made him a set up for extreme behaviors... and the mold just set it off. I remember it was a very sad time for me and no one could give me answers.

Posted

Yes. My son's gait changes when he gets a symptoms flare up. He twists slightly to the side, bends over and his foot turns in also. I don't think he has ever walked quite the way he did before the onset of PANDAS at 8 years old. Before he was really sporty and had great posture. Now he always looks a little awkward and is less sporty. It is markedly different though when he gets a flare up of tics.

Posted

Yeah, our ds had serious difficulty walking, especially in the early days when his diagnosis was ARF / SC. And Sammy Maloney walked hunched over all the time because he was "avoiding the invisible obstacles" generated (according to his OCD) by electrical outlets, etc.

  • 1 month later...
Posted

Just happened across this thread tonight -- while hunting for something else.

 

YES, YES, YES! . . .

 

At the worst point, my son could hardly even move his neck. He was hunched over like a 110-year-old. For a while we suspected Lyme disease, because of the unexplained "buffalo hump."

 

I realize the "hump" and the "L" are not identical in appearance, but I suspect they are "variations on a theme."

 

When my son improved, the hunching/hump went away. When he recently relapsed, it returned.

 

(Of course, when the symptom first struck, along with a myriad of others, all the doctors just treated him like he was faker and a weirdo.)

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