My son is 5 and was just newly diagnosed with RLS/PLMD (restless leg syndrome/periodic limb movement disorder) and new onset hypertension. He has ALWAYS complained that his knees hurt, since he was about 2. Original diagnosis was "growing pains." Seen Rheumatologist and Orthopedic Surgeons. Bad knees run on my side of the family (myself 7 knee surgeries). Growing pains are not consistant with storm or cold fronts; however, they still aren't concerned. He's always kicked his legs around since I can remember. He's never been a child who laid still while he was sleeping. Now he's throwing "fits" (as I call them) at night and only at night. He thrashes around kicking and screaming/crying. Straightening his legs and then curling them up so close to him and then kicking them out again, all the while he's awake but cannot be calmed down at all. Touching them to rub them isn't an option. Been kicked one too many times to realize that it won't help. He's had so much blood work done and nothing can be determined. He's RF (rheumatoid factor) negative but so are both of my parents and they have full blown arthritis requiring replacements. I can understand the RLS/PLMD diagnosis but yet nothing is being done. He's sleeping an average of about 4 hours a night without interruption and "fits." He wakes up in the morning walking like I do, stiff and not able to do anything quick. He gets down on the floor and says "please help me, my knees are hurting and I can't get up. They're old." I'm over it. Has anyone ever had anything like this happen before to them? Can it be anything else? Any help that anyone can provide would be greatly appreciated.

Thank you in advance for all of your help. I pray you are all well.

Zack's Mom

I am so sorry that you and your poor son have to go through this. I do not have any advice of my own. I just wanted to make sure that you know there is another board for Restless Leg Syndrome on here. Those people may have some more answers. I wish you both luck.

Hi! Amitryptline (sp) was a migraine drug tried on my 8 yr old son which also works on RLS - so I know there are drugs out there.
Has anyone looked into abdominal migraines. It might explain his curling his legs up for the pain. Or even night terrors - their eyes may be open, but they are unconsolable.
A 5 year old should NOT be in any pain, let alone not being able to get up off the floor on his own. This shocks me that a doctor would let this go!!!!!
My 8 yr old son has possible JRA due to his starting limping at age 2.5 yr. His rheumatoid factor and ANA has been negative this whole time. This summer his ANA did turn positive. But he has been seeing a Ped. Rheumy ever since 2.5 yr old. He does not exhibit regular symptoms thus the non-diagnosis at this point. He has some slight fluid, but it typically is not warmer than the rest of his legs and then with his blood work being normal - most docs would have turned him away.
Limping and pain in a young child should NEVER be ignored. Seek a second or third opinion, preferably a pediatric specialist.
Let us know what happens.

I'm so sorry to hear about your son and his pain. My son went through some of the same pains and has finally been diagnosed w/Perthes disease, which is necrosis of the ball of the femur that fits into the hip socket. It causes limping and pain while sitting/sleeping and deferred pain in the knee. I'm not saying that this is what your son has but it's something that I would want ruled out. Best of luck to you and God bless your son.

I would like to thank everyone very much for your information and support. Believe you me...if these doctors think that I am going to let my son hurt...they have another thing coming. I really irritate the doctors because I'm not ignorant to the medical field. No, I don't have an MD or PhD or any medical training; however, with 11 surgeries and numerous "unknowns" in my medical past, I've learned alot.

nrtofluv, my son has also been seeing a ped rheumotologist but since I was getting anywhere with him, I've started asking for my own tests to be done. Seeing that they think that he also has PLMD instead of RLS, they are doing a huge blood panel on him. Well, they are also going to run the rheumatoid gene test to rule it out completely. I've known way too many people who don't have "typical" symptoms and are RF negative getting them nowhere. My son's pain is generally associated with storm fronts. Does this affect your son as well? Do they have your son on any meds? They have started my little one on Clonidine (a bp med but is used as a sedative for children with ADHD). Seeing that my son isn't ADHD and his bp has been much lower, we're using it as a sleeping agent. We started last Thursday with .1mg at night but I refused to start him on that dose per the pharmacists orders of half the .1mgs. He slept great Thursday and Friday night. Saturday night it started again. We increased his meds to .1mg each night now and last night he slept well. He is now sleeping through his "fits" and is doing great at school. He's still kicking and thrashing around but with the sleep, he's doing much better. The stiffness is still an issue in the morning but it seems to be less severe since he's been getting the rest. The one thing that I have noticed with the new meds, is that he isn't flexing his entire lower body when he is going through the fits. He's kicking and thrashing and that seems to be "okay" for his little body.

I'm just so stumped. I'm tired of fighting. I can't get into to see the pediatric neurologist until January 18. The pediatric nephrologist can't see him until January 3. Our peds doctors are really busy as you can see but nothing seems to be a priority. I thank my lucky stars because I know that it could always be worse. But when it comes to our kids, nothing is good enough or fast enough.

Again, thanks so much for everyones advice and support. I greatly appreciate everything.

Zack's Mom

Zach's Mom (that's my nephew's name)
The neuro is your best bet - in my opinion. They did an overnight sleep study on him at the children's hospital with EMG. This detected every process that occurs in the brain during sleep.
I would suggest you request one as soon as you can. Your reg. ped. might be able to get one set up prior to your appt with the neuro.
The brain MRI would be the next thing I would request as a parent to make sure he is not having any sort of seizures.
Like you said, time is so slow when you are trying to determine the cause of your child's pain.
I would continue to call back to the neuro and nephro offices everyday to see if there has been a cancellation. Typically the front office staff learn your name and they don't mind you calling. And they will also understand that you want in ASAP. Sometimes this work as long as you stay very polite, which is sometimes hard to do when you want to scream at them for putting you off so long.
Have you ever taken him to the ER at night during his fits? I mean, has a doc actually seen one of these fits?
I'm glad the medicine is working for your son as well as allowing you to get some sleep too. Sleep is such a powerful need, the deprivation alone is horrible.
Also, yes - I can tell when a storm front is moving in by my son's movements (stiffness) as well as my own. I have a benign bone disease that is also affected by storm fronts - which luckily my son doesn't have.
Please post when you can and let me know how things are going for and your son. Or if I can help out in any way - even if it's just someone to vent to ;-)
I'll be thinking about you.
Ty's Mom

Ty's Mom,

Thanks so much for everything. Just wanted to give you an update. This morning Zack woke up at 4am with a swollen and hot left knee and walking duck-footed. Got him into the pediatrician this afternoon to finally have the inflammation and temperature difference "documented." He was still walking funny and wasn't happy about her touching him but he handled it well. Well, she called the ped. rheumo and he still says that it has nothing to do with jra but said to have an ultrasound done on the joint to see any inflammation and if any was found that he would decide what action to take this evening. Well, the ultrasound did show some extra fluid. I'll keep you posted on that one. The ped also called the neuros and got he appt moved up to next week on the 29th. Since we had taped his "fits" and she was able to view them, she was determined to get him in ASAP. She didn't realize or believe that he was having as many "fits" as I was saying. She saw one night where he had three different episodes and was alarmed about the pain he was in. DUH! :) Do we as parents have nothing better to do with our time than make things up? ;)

I am just so excited that everything was actually seen today. The warmer temp is something new. It wasn't red to eye but you could feel a temp change by hand. The swelling was still there when we got there. I tell you what, if it weren't for this doctor, I cannot imagine what wall I would be running into. She's really fighting and now that she has physically seen for her own eyes the situations that I've been describing to her made a world of difference. I gave her all of the information that I had gotten off of the internet about PLMD. We've now had a CT scan, an EKG (both being related to the new onset hypertension), xrays, and an ultrasound on both knees and hips.

Does your son take any meds? How is he doing now? What causes his flare ups? Does he have kicking episodes at night too? What kind of drs has he seen? Are you content with your drs?

Please know how much I really appreciate everything that you have offered and said. I am more grateful than you will ever know. Keep me posted on your son as well. I've gotten in a habit of checking this at least once a day and look forward to hearing from you soon. And please know that I am here for you to vent as well.

Zack's Mom