My daughter has been recently diagnosed with rls. She is an excellent student, she dances, plays softball and basically enjoys life. She only became symptomatic about 1-1/2 months ago.
She had an overnight sleep study, a visit to a sleep specialist and is now diagnosed.
She has been on Mirapex with no results and is now on a trial of Neurontin. I would like to hear from any parents of children in this age group. I am very interested in any non-pharmaceutical methods. I have checked out rlsrebel.com and found it very interesting.
Looking forward to any info anyone can pass along. -Kathy
12-yr-old w/ rls
Hi Kathy
I am also Kathy with a 6 1/2 year old with rls and plmd. It is very challenging. We have tried Klonopin and requip. Neither have worked. They made everything worse. I have not yet found anything non pharm but i look for it every day. I hope you have good dox. It makes all the difference. I live outside of Philadelphia. Where are you? Would love to chat with you.
I am also Kathy with a 6 1/2 year old with rls and plmd. It is very challenging. We have tried Klonopin and requip. Neither have worked. They made everything worse. I have not yet found anything non pharm but i look for it every day. I hope you have good dox. It makes all the difference. I live outside of Philadelphia. Where are you? Would love to chat with you.
Hi Kathy,
So nice to have someone to chat and commiserate with on this subject. My daughter has an appointment to see a pediatric sleep specialist from Children's Hospital Boston (we live in Plymouth, MA). However, we couldn't get that appointment until May. We had to do something, so she does see a neurologist/sleep specialist a little closer to home and he seems okay but he sees primarily adults.
I read a letter on the Southern California RLS Support Group website from someone who eats a small spoonful of peanut butter as soon his/her legs get twitchy and it works. Like anything else it may not work for all but I think we will give this one a try tonight. Does your daughter like peanut butter?!
Kathy
So nice to have someone to chat and commiserate with on this subject. My daughter has an appointment to see a pediatric sleep specialist from Children's Hospital Boston (we live in Plymouth, MA). However, we couldn't get that appointment until May. We had to do something, so she does see a neurologist/sleep specialist a little closer to home and he seems okay but he sees primarily adults.
I read a letter on the Southern California RLS Support Group website from someone who eats a small spoonful of peanut butter as soon his/her legs get twitchy and it works. Like anything else it may not work for all but I think we will give this one a try tonight. Does your daughter like peanut butter?!
Kathy
Hi again
I can't believe the wait for dox appts. We had the same problem at Childrens hospital of Philadelphia. Of course it is the best, but what are we supposed to do in the meantime. My problem is getting things figured out before he starts school all day next year. I sometimes feel like this will never end. I hope for my son's sake that they can help kids quicker and find a drug that they can tolerate. Maybe do some clinical trials. I see how bad adults suffer with this disease and it saddens me that someday he will be like them. We have appt. with our neuro/sleep specialist in April for a follow up visit. We are very lucky to under the care of Dr. Arthur Walters who is one of the best out there and also serves on the RLS medical advisory board. I look forward to talking again soon.
Chelsea
I can't believe the wait for dox appts. We had the same problem at Childrens hospital of Philadelphia. Of course it is the best, but what are we supposed to do in the meantime. My problem is getting things figured out before he starts school all day next year. I sometimes feel like this will never end. I hope for my son's sake that they can help kids quicker and find a drug that they can tolerate. Maybe do some clinical trials. I see how bad adults suffer with this disease and it saddens me that someday he will be like them. We have appt. with our neuro/sleep specialist in April for a follow up visit. We are very lucky to under the care of Dr. Arthur Walters who is one of the best out there and also serves on the RLS medical advisory board. I look forward to talking again soon.
Chelsea
7.5 y.o. boy with RLS PLMD
Hi - I'm in Minnesota and we've been doctoring with pediatric sleep specialist Dr. Gerald Rosen - Children's Hosp. St. Paul. He's published many times in the Journal of Pediatric Medicine on verious issues involving sleep disorders and RLS. My son had his sleep study 1/21 and his PLM's were over 20 per hour. 179 over the course of the study. Dr. wanted us to try Mirapex. But after researching it I aksed if there was another - too many class actions scared me away from it. He and the ped. neuro talked and decided to try clonidine. It hasn't taken away the PLM's but I think he seems more rested. It's supposed to take him to a deeper level of sleep so the the PLM's don't keep him in Stage 2 all night. The goal is to get him to Stage 3-4 about 40% of his night. At his study he was only there about 11%. My friend that's a pharmacist said that the Mirapex class actions were related to over prescribing the dose. I was interested to read here that it hadn't worked for other kids. My friend thought that my son would benefit from a really dose.
Good luck and let me know if you find any cures...
Colleen
Good luck and let me know if you find any cures...
Colleen
Hi Colleen,
I used to do medical transcription for the Boston Medical Center Neurology Group and I am familiar with some of these medications. I am not thrilled to have my daughter on any of them but I am willing to try low doses. We stopped the Mirapex because it was not effective and it upset my daughter's stomach. She would feel nauseous about an hour after the dose.
My daughter had PLMs (129 total) during her study as well but this is not her main issue. It is definitely the RLS and falling asleep. Currently she is taking 100 mg of Neurontin an hour before bed and it seems to helping the severity of the RLS and she is falling asleep a bit earlier but is by no means symptom-free. She has only been on it 9 days and can go up to 300 mg by increasing 1 capsule per week. Her problem is swallowing the capsule. She has a difficult time just getting one down. I believe this drug also comes in liquid form and I may be looking into that option.
Good luck with things and keep in touch. It's nice to have this outlet of support from other parents.
Kathy
I used to do medical transcription for the Boston Medical Center Neurology Group and I am familiar with some of these medications. I am not thrilled to have my daughter on any of them but I am willing to try low doses. We stopped the Mirapex because it was not effective and it upset my daughter's stomach. She would feel nauseous about an hour after the dose.
My daughter had PLMs (129 total) during her study as well but this is not her main issue. It is definitely the RLS and falling asleep. Currently she is taking 100 mg of Neurontin an hour before bed and it seems to helping the severity of the RLS and she is falling asleep a bit earlier but is by no means symptom-free. She has only been on it 9 days and can go up to 300 mg by increasing 1 capsule per week. Her problem is swallowing the capsule. She has a difficult time just getting one down. I believe this drug also comes in liquid form and I may be looking into that option.
Good luck with things and keep in touch. It's nice to have this outlet of support from other parents.
Kathy
Hi Kathy,
I just recently called Children's Hospital in Boston to have my son evaluated. He is 10 years old and has extreme difficulty falling asleep, he does not sleep through the night and he is constantly kicking and moving in his sleep. He has seen psychologist, and councelors as they thought it was anxiety driven but the more research I do about RLS, the more I think it may be something of this nature. I am expecting a long wait to get him an appt. as all of our exeriences at Children's have been such. My son has not complained of any pain in legs while sleeping. I hope I am on the the right path. Any insight from anyone else's experience will be appreciated.
I just recently called Children's Hospital in Boston to have my son evaluated. He is 10 years old and has extreme difficulty falling asleep, he does not sleep through the night and he is constantly kicking and moving in his sleep. He has seen psychologist, and councelors as they thought it was anxiety driven but the more research I do about RLS, the more I think it may be something of this nature. I am expecting a long wait to get him an appt. as all of our exeriences at Children's have been such. My son has not complained of any pain in legs while sleeping. I hope I am on the the right path. Any insight from anyone else's experience will be appreciated.
Hello,
We have an appt. in early May to see Dr. Ferber at the Children's satellite office in Waltham. That office had earlier appts. than the actual hospital. So you may want to try for that as well.
My daughter has a follow-up with a neurologist/sleep specialist she has already seen in a about ten days. I had to get her to see someone before the Children's appt. because both she and I were losing a lot of sleep.
I really want her to see a pediatric sleep specialist just in case there is anything different to try or anything he can recommend that is specific to the needs of a child.
My daughter has no pain in her legs either. She just has the urge to move them as the evening progresses and she becomes tired. It seems to peak just before she falls asleep and can be very frustrating.
Good luck with your son and keep in touch. It's nice to hear from someone local.
Kathy
We have an appt. in early May to see Dr. Ferber at the Children's satellite office in Waltham. That office had earlier appts. than the actual hospital. So you may want to try for that as well.
My daughter has a follow-up with a neurologist/sleep specialist she has already seen in a about ten days. I had to get her to see someone before the Children's appt. because both she and I were losing a lot of sleep.
I really want her to see a pediatric sleep specialist just in case there is anything different to try or anything he can recommend that is specific to the needs of a child.
My daughter has no pain in her legs either. She just has the urge to move them as the evening progresses and she becomes tired. It seems to peak just before she falls asleep and can be very frustrating.
Good luck with your son and keep in touch. It's nice to hear from someone local.
Kathy
Hi- I just posted on Non-Pharmaceutical topics, under "Aspartame-the Culprit". I am in my mid-40's and have suffered from RLS as long as I can remember, even as a young child. No one understood what I was complaining about when I tried to tell them what was going on. My parents (both MDs) told me I had growing pains and left it at that. I would stay up half the night sometimes, walking up and down the hallway outside of my bedroom, attempting to alleviate the RLS symptoms. I was very athletic and active with sports etc. On the other hand, I must say I'm kind of glad that none of the neurochemical drugs that are available now were given to me back then. I'm not a pharmacologist, but I do know that the drugs for RLS are powerful neurochemical drugs with many side effects and personally I would give a lot of thought to it before giving them to a young child. These drugs don't have a lot of historical data when it comes to giving them to children. Please be prudent, I survived without the drugs. RLS doesn't kill you, it's just very difficult to cope with.On the other hand, I think it got a little better in my late teens. Just please do your research and ask lots of questions.