Leg pain/cramps

[memom]

My dd is in her 3rd week of steroids (now down to 10mg am and 10mg pm day 3) and woke this morning with pretty severe leg pain bilaterally. It was unclear if it was knee joint pain or muscle pain or a combination of both. It is equal in both legs and is spasmotic like muscle cramps and is affecting both legs from the knees down. It was brining her to tears earlier, now seems to have calmed down to a dull roar though is still there. She say's her muscles are also twitching in her calves. She has normal patellar reflexes, no swelling of her knees or ankles. She is limiting her walking, has taken a bath and even advil.

 

Is this at all familiar to anyone? The only new mix for her is the steroids, Augmentin, and methyl-mate (vitamin B-12 drops).

 

Thanks in advance.

 

Ellie

[Worried_Dad]

So sorry for your daughter, Ellie!

 

When our son first got sick, he was diagnosed with ARF / SC instead of PANDAS. (Before that, our PA even suspected juvenile rheumatoid arthritis.) His initial symptoms were severe joint pain that moved from joint to joint, muscle weakness, difficulty walking. Then we noticed tremors in his right arm and legs in the evening when he got tired that ultimately became episodic choreiform movements in all limbs.

 

These symptoms didn't get worse on antibiotics or steroid burst. And our DAN doc prescribed B-12 injections for a while that didn't make these symptoms worse, either (that we noticed).

 

Sorry. Wish I had better answers!

[memom]

Thanks for the response.

 

Her OCD is really bad today also. I will have to wait and see what happens. I am wondering if it is because she is tapering down. We had a great 1-2 weeks. I wonder how tomorrow will be.

 

Ellie

[OTSMITH]

Hi Ellie, my daughter's name is Ellie. Well we are on our 2nd week of predisone, and last night was complaining of leg cramps. It seems she is experiencing ALL the side effects of the steroid gig. I am not happy @ that. Her original dx was RF/SC.

[Debbie1]

memom,

 

I would definitely put a call into the doctor.

 

We have had minimal side effects from the prednisone (this is our second time using it). Puffy cheeks and increased appetite, but that's really it. They did both disappear the first time around after finishing the steroid, although I do remember being warned by my ped that the side effects come quickly and disappear more slowly.

 

We did encounter problems on the prednisone this time around each time we dropped the dose. We dropped each Tuesday and by Thursday her symptoms would ramp up. They would settle down over the next few days and by Sunday we saw improvement again. This happened every week on the steroid. Overall, she is much better than when she started the prednisone despite the setbacks. Dr. L. reminded us this week that healing the brain takes time. She told us to think of it like a concussion.

[memom]

I'm sorry. My daughter's symptoms are gone now. A full day of very painful legs impacting on mobility. I find it interesting that the day of the leg cramps, OCD setback, next day, pain gone, OCD better. This back and forth in healing is weird. How is your daughter today?

 

Ellie

[memom]

I definately considered calling Dr. Latimer, and would have if it continued. Given the sawtoothed nature of the healing, even on the steroids, I am watching anything weird for a full day and reevaluating it the next day before I jump off a cliff. It seems like we have had 3 or 4 crazy bad days since starting the steroids (now on day 19), without pattern, but the next day has always been better again. She even did her homework yesterday without prodding!

 

I will watch for the pattern you noticed. It is interesting that each time she has had a meltdown it has been on a Saturday (we dropped our dose on Thursday). It seemed to take a few days before we started seeing improvement.

 

Ellie