Pain attacks but normal sed rate

[pandakid11]

Hi

Our 11 year old who has now been sick since November is starting to have pain attacks that are so bad that he cannot walk and if you try to touch him, he will scream in pain/cry. What the heck is this? I am so concerned he is getting MS or something. Is this something normally seen in PANDAS? Where would one go to get the PEX treatment? This seems more promising than IVIG as the fear over stealth viruses/hepatitis etc...is a concern with IVIG and IVIG seems to wear off, no? Please reply on pain. This pain is a burning, over the top, screaming pain.

Thanks. Note: His sed rate is normal so it isn't arthritis.

 

Very worried dad.

[bulldog24]

Well I am a chronic pain patient. I have Lyme and that caused fibro.

 

It sounds like he could have nerve pains (neuropathy) Burning sensation is just that,

 

You could try b12 and magnesium. but he may need something more if his pain is that bad.

 

Narcotics do not work well on nerve pain, things like cymbalta, neurontin etc helps. I would certainly talk to his doctor. I dont know if those drugs are appropriate for kids.

 

 

I havent heard many PANDAS kids with severe pain unless they have Lyme.

[bulldog24]

oh and sed rate doesnt mean too much. So dont put too much stock in it. My sed rate was noraml for years. but there is something called crp ( c reactive protein)

 

also measures inflammation. Mine was 20x normal and has been for years. so please dont think that a sed rate thats normal rules certain things out. one of the reasons no one believed my son had pandas was a normal sed rate...

[nicklemama]

I have always had normal sed rates. I've had rheumatoid arthritis for 15yrs. That said, I think the pain is PANDAS related. My DS's feet hurt terribly, at times. He hasn't had foot pain since he had IVIG nearly 1yr ago.

[dut]

can you tell us where the pain is.. is it all over or joint or muscle?

[pandakid11]

Pain is always all over but in the attacks, it is nerve pain all over and you cannot even lightly touch him. MS would be extremely rare in an 11 year old, correct? Doctors are even baffled and despite seeing so many, we still don't have answers.

thx

 

 

can you tell us where the pain is.. is it all over or joint or muscle?

[bulldog24]

lyme can mimic ms. Has he been tested if so where?

[momcap]

My DS8(PANDAS/lyme) has the pain attacks just like you describe. He will scream and won't let us touch him. He stays exactly where he is and won't move even a tiny bit until it passes. He has joint pains and muscle pains, but they are different. They are quite specific, he's good at describing where it hurts, and he can still move around. But when he gets what I call a "pain attack" he goes into full-out panic and can't describe where he hurts. He screams that it hurts everywhere, and seems confused about exactly what hurts and what doesn't. He gets into hysterics. I almost called 911 last time because it was so terrifying. Thankfully he has only had 1 of these pain attacks since starting lyme treatment 8 months ago, and it was right after a big med change, so I think it was part of a herx. I'm hoping they are gone for good now.

 

My DS5(lyme) gets something similar, but not as bad. Occassionally he gets pain like this in certain places. One day it was his scalp. It was fine if nobody touched it, but if something even grazed his head lightly he would scream out. Another day it was his arm. Another day he fell on the floor and couldn't get up b/c of his leg. I tried to pick him up and he screamed at me not to touch him. It's only happened the 3 times. It seems similar to DS8 in that it hurts to touch or move and he gets panicky, yet different because it's in 1 place instead of everywhere.

 

I think this is from lyme, not PANDAS because my youngest does not have PANDAS.

[fightingmom]

I have this too. Though it doesn't last all day it comes in waves and my husband will want to help me and I will mutter out not to touch me. It's happened a handful of times and lasted an hour or so. It feels like nerves to me. I'll be seemingly fine and then brought down to the floor with burning pain. I don't have PANDAS, but recently tested for Lyme. I would definitely look into it.

Edited May 1, 2012 by fightingmom