Ideas about Restless Leg

[pr40]

I know that only a few of PANDAS kids get RLS but need to ask for new ideas.

We use magnesium and iron and melatonin and ibuprofen and all of them help. RLS went from being noticeable every day to being manageable to being absent for some periods. BUT dd also has exacerbations. They last a few days. Is there anything else that you tried that worked?

[cobygurl]

I use regular Epsom salt baths and it seems to relax his legs...I was just recently given magnesium cream to try as well.

[sf_mom]

I am wondering which antibiotics your child is on? Iron, magnesium, calcium can bind to the Azithro class of antibiotics and render it less effective. All great supplements for restless leg but not great if its binding to antibiotics decreasing ability to treat infection. Make sure these supplements are taken 2 hours away from antibiotics.

 

We have done so much over the years for Lyme treatment it is difficult to say what specifically helped our older son's restless leg but it is gone. Kids are on iron, D3, magnesium, zinc. We also did a lot of epsom salt baths.

[qannie47]

My ds7 had rls as well. He had it a long time along with joint pain behind his knee. The interesting thing for us was that when he had his first major Pandas episode, (positive strep), he was on abx for 6 weeks. I never connected his leg issues with strep, but after abx for 6 weeks, his rls and joint pain went away 100%. Which leads me to believe that the strp was hiding out in his joints. I think the leg shaking was his way of dealing with the discomfort. If you read on Pandas, you will find that they believe that in Pandas kids, the strep hides in joints. The fact that his went away, and never ever returned, (even in new episodes), tells me that this was the cause. Could there still be hidden infection?

[nicklemama]

Iron. We've seen a lot of improvement on a low dose iron supplement. DS's ferritin levels were very low. Way below normal range for many years.

[Dedee]

My son has it as well. We use Kavinace. It's an Amino Acid that our LLMD recommended for sleep and anxiety. It really helps him.

 

Dedee

[pr40]

thanks, guys. you are always so helpful.

yes, SF Mom, she is on azytro -- I'll move the iron and magnesium to afternoon to see if it makes a difference.

[pr40]

qannie47 -- strep in the joints, I never thought of that. Is there a way to check it?

She does not normally complain about joint pain but she did at the beginning of all this two years ago.

[pr40]

dedee -- what's the dose of kavinace you give? and when?

thanks!

[qannie47]

Strep in the joints is one of the places strep is thought to hide. Allowing time for "mimicry". I don't know of a specific blood test, but perhaps a strep test? Blood test for anitibodies? Although, my understanding is that when the strep is "hiding" in the joints, it is at that time that the immune system has not caught on to it yet, hence the word "hiding". So, a blood test would not show antibodies. The fact that all my ds's leg issues: rls/joint pain went away 100% to never return even with future episodes, to me is highly suggestive that their theory is correct. Perhaps not the origin for all joint/rls cases, but in our case, it holds up. My ds was on abx for 6 weeks with initial episode. We were not even addressing the joint/rls at that point, but it was a positive and interesting by-product of the abx treatment...

[Thesuzie]

This is interesting. My dd11 has experienced terrible joint pain. Although she has so many pandas symptoms, the joint pain is consistently the most severe. When she has a flare, we can not touch her. She also has rls occasionally. Any suggestions for joint pain? She's on augmentum and azith, waiting for ivig.

[SSS]

Thesuzie, from Long Island, have you checked for Lyme disease?

That much pain, etc.

[qannie47]

I used ice first....then ibuprophren if ice did not work

[PowPow]

This is interesting. My dd11 has experienced terrible joint pain. Although she has so many pandas symptoms, the joint pain is consistently the most severe. When she has a flare, we can not touch her. She also has rls occasionally. Any suggestions for joint pain? She's on augmentum and azith, waiting for ivig.

Please be sure you daughter is thoroughly checked out by a rheumatologist. There are connective tissue disorders that can cause PANS symptoms and the pain you describe.

[Dedee]

pr40 - Sorry I am just now getting back to you. We give one or two capsules each night depending on how he is doing at the time. My son is 14 and adult size. I would start with one capsule and see how he does. Two capsules is not excessive. I have taken two before and not felt overly sedated or sleepy the next morning.

 

Dedee