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My ds6 has these itch attacks in his legs (maybe its pain) he screams they hurt when PANDAs symptoms start to ramp up, this is the 3rd one in about a year, the first being the big one when we found out about PANDAS. What happens is he wakes up (last night 3am) and is crying, screaming agitated, kicking his legs. Kind of hard to console. I noticed he has been really really itchy the last few weeks and has had some mild preserveration issues. I used motrin on him the past few days and thought he was doing pretty good until last night.

 

Once I calmed him down I had to scratch his legs and massage them for nearly an hour and then he wimpered a little like he was sad, then got glad and was huggy and told me to sleep with him and rub his back but then went back to sleep after 2 hours. He was up from 3am to close to 6am.

 

Could this be high histamine, inflammation, both, restless leg syndrome, lyme, etc.? I am currently looking for LLMD because I have suspsicions of co-infections besides for PAnDAS even though my son had a long history of strep.

 

Any of your kids get itchy out of thier skin durig exacerbation? It seems like a combination of pain and itchiness. My older son says his legs hurt too but he says its more like deep burning.

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I do think it could be histamine as we saw similar symptoms when we had our DS on too much B12, and his histamine ramped up.

 

I would try Pepcid, a H2 blocker; it has been a wonderful therapy for our DS. We also do Benedryl occassionally at night. Seems to me either or both are worth a try as you should see results fairly quickly if it's a viable response in your case, and it might help tame some of these symptoms while you decide what your next step is.

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YES! My daughter had this- she actually scratched through her skin on her shoulder blades. LLMD and one PANDAS doc (not one we see now) felt it was radiculopathy from her Lyme. It was horrible, horrific and maddening for her and us. She would scream for us to scratch her back and then crumple to the floor in pain as we scratched it.

What finally helped her was Lyrica. After one or two nights, it eased immensely. She had suffered from this (it progressively got worse) since onset - or actually a few months before PANS. So almost 2 years of torture solved her by Lyrica.

 

Just something to consider. The hypothesis was that her known tick-bite (years earlier, as a preschooler) had been on her back and perhaps the bacteria had done nerve damage there- as she also had specific areas on her feet and hands that also "itched" and they corresponded directly to the nerve that runs from the shoulder blade area. (or something like that:)

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My ds6 has these itch attacks in his legs (maybe its pain) he screams they hurt when PANDAs symptoms start to ramp up, this is the 3rd one in about a year, the first being the big one when we found out about PANDAS. What happens is he wakes up (last night 3am) and is crying, screaming agitated, kicking his legs. Kind of hard to console. I noticed he has been really really itchy the last few weeks and has had some mild preserveration issues. I used motrin on him the past few days and thought he was doing pretty good until last night.

 

Once I calmed him down I had to scratch his legs and massage them for nearly an hour and then he wimpered a little like he was sad, then got glad and was huggy and told me to sleep with him and rub his back but then went back to sleep after 2 hours. He was up from 3am to close to 6am.

 

Could this be high histamine, inflammation, both, restless leg syndrome, lyme, etc.? I am currently looking for LLMD because I have suspsicions of co-infections besides for PAnDAS even though my son had a long history of strep.

 

Any of your kids get itchy out of thier skin durig exacerbation? It seems like a combination of pain and itchiness. My older son says his legs hurt too but he says its more like deep burning.

 

My ds 8 also has some itching and it seems to be more prevalent during and episode. His is mild, but I do notice it. He is PANS also, but no lyme and tested negative for that. So I think it may be an issue of histamine for us. Alot of these kids seems to have ups and downs with histamine levels. We had been high and low at different pints. High seemingly to be during an episode. Again his is mild, itching and episodes, but I think there is a definite link to episodes.

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Have you considered parasitic worms? Sorry to gross you out. We currently have our (non-PANDAS) daughter on a 6-week parasitic protocol ordered by our LLMD. She was itching like crazy, usually at night when parasites are most active.

 

Interesting, makes sense that at night it would be worse as they are active (parasites).

How did they diagnose parasites?

Other than itching what were the symptoms you noticed?

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I had INSANE itching on my my arms some months back, and I'd itch, and it made it worse- my Dr. told me I wasn't 'detoxing' enough-

I started doing nightly hot Epsom salt and dead sea salt baths, it helped-

this phase has now passed.

 

Parasite symptoms in children:

Constant eating- most likely without weight gain.

Grinding teeth, chewing fingernails.

Itchy bum.

Note around full moon time of the month when parasites multiply;

is behavior worse?

Night waking.

(there are others, this is all I can think of for now)

 

It is hard to get a test for parasites- often missed.

Metamatrix stool test came back on dd: parasites yes, but species unknown.

We have done rounds of parasite protocols.

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I had INSANE itching on my my arms some months back, and I'd itch, and it made it worse- my Dr. told me I wasn't 'detoxing' enough-

I started doing nightly hot Epsom salt and dead sea salt baths, it helped-

this phase has now passed.

 

Parasite symptoms in children:

Constant eating- most likely without weight gain.

Grinding teeth, chewing fingernails.

Itchy bum.

Note around full moon time of the month when parasites multiply;

is behavior worse?

Night waking.

(there are others, this is all I can think of for now)

 

It is hard to get a test for parasites- often missed.

Metamatrix stool test came back on dd: parasites yes, but species unknown.

We have done rounds of parasite protocols.

 

Did the doctor order the test or did you have to ask them to order it?

ds8 always seems to have a huge appetite all the time, maintaining current weight. Not sure if this is just growing or something else. Where he puts the food is beyond me!

Wonder if there is a home test? I will do more research...

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I do think the itching is something gastro related, he is constipated everyday his entire life. He just started Flagyl yesterday evening after being at a loss why steroids wouldn't help and we found a huge swollen lymph node behind his right ear. The flagyl seemed to stabilize him for the evening and then this morning he was moody and tough again. Calmed down after Flagyl this morning so I agree he either has gut bugs, cdiff, or bacteria overgrowth. Azithro still being given daily hopefully between the two we can get this flare up to calm down, its not looking too good.

 

Not sure if its a full moon right now will have to check. Thank you. I never heard of that theory, but certainly he has something going on right now.

 

Staph is what is on my radar right now, because he keeps getting these little blisters on his forehead. Like whiteheads and the pediatrician says it looked like staph so he gave him keflex last month in addition to the azithro the blisters cleared up but I think the double dose of abx gave him cdiff or yeast or both and now we are dealing with that, plus his older brother is sick with flu.

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My son also has had a scratching tic. My son had them mostly during the day. Nothing could stand in the way of his sctratching (ie. Walking through a parking lot, car coming...I would have to pick him up and carry him while he was scratching so he didn't get run over; he wouldn't scratching stop for anything). This happened alot in kindy and first grfe. Now in second he scratches his face and has several scabs. My son also has tons of the white bumps you are describing in his arms, under armpits, face and knees/shin area.

 

When he started zithro the itching stopped. Now he is off abx and is back to scratching but mostly just his face now.

 

Sorry I can't help but know you are not alone!

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