Restless Legs Syndrome (RLS) Discussion Board

I'm new to this forum and desperate to find help for my 8 yo son. We have dealt with his RLS without medication for the past 4 years however his symptoms have now intensified over the last 5 months. We started him on allergy shots 6 months ago and I feel this has caused an inflammatory response which has increased the severity of his RLS. He wakes 10-15 times a night, nervous system is in over drive. He is jittery, kicking, screaming in pain. I have tried everything I know how to do as a nurse and a mother. He was started on predisone for 3 days for asthma and seems to have taken the RLS away at least for now. I have the Neurotin filled and ready to give to him when the predisone is no longer in his system and the symptoms return but I am reluctant to do so without a second opinion. His Immunologist said she never heard of this type of response to immunization therapy, he is also on Zyretec, and Nasonex which I see has made the "medications not to give list". Has anyone else had a similar situation?

Welcome AnnaM - we are sorry to hear that your son is having such a difficult time with.
Can you tell us why your son was started on allergy shots? Was it for a particular condition?

It is known that allergy medication can cause real problems for sufferers of WED/RLS although some of the newer types are thought to be not just so problematic.
Note that zyrete and nasonex are also allergy medications. It might be difficult to settle WED symptoms while using these medications.

Restricting caffeine could help generally.
Also cold/hot baths/showers can sometimes ease the symptoms for long enough to get over to sleep.

I'm not aware of any guidelines for treating WED in children but in the book Clinical Management of Restless Legs Syndrome (second edition) it states that most specialists who treat children would use the Dopamine Agonists such as Pramipexole or Ropinerole using the lowest dose, or even half the lowest dose by cutting the pill in half.

There have been other members with children who needed help and if you search this forum there should be some relevant information to help to discuss the situation with your doctor.
Many GPs are not well versed in WED and you may have to help education your GP, as many of us have done.

I wish we had more parents on this board. many come for help, then leave.

Are you aware of Dr Mark Buchfuhrer in Southern California? He will answer questions about treatment. I know he treats some younger patients, so he may know what to do.

My gut feeling is that the allergy meds may indeed be part of the problem. Even though Zyrtec is on the approved list, some adults here cannot take it. there are so few children with severe WED that it doesn't surprise me that the immunologist is not aware.

I can relate to your son's situation. I have had severe allergies for almost 50 years, but thankfully did not develop severe WED until I was older.

For the allergy medications, Nasonex is a topical steroid, so it should not be aggravating his WED. Zyrtec is on the "approved" list for WED, but some of the doctors say that small amounts tend to leak across the blood-brain barrier so that it could cause WED problems with particularly sensitive individuals. You might want to consider switching to Claritin or Allegra, which are supposed to be completely WED friendly. But, personally, I use your son's combination of Zyrtec and Nasonex. I also use Singulair, which is useful for asthma and allergies, but I don't know much about pediatric use. Singulair is not an antihistamine.

Personally, I think that there is a link between my allergies and my WED. None of the doctors that I have questioned about this know anything about a link, but I know that my WED problems are worse during the spring and fall pollen seasons (my allergy meds stay consistent year round). This means that I have to increase my WED meds to keep it under control. There is so much that is still not known about WED, I will not be surprised if they eventually find some sort of connection other than the antihistamine link that everyone always cites.

Oh Anna, my heart goes out to you and your son.

I'm a 70 year old woman who has had RLS for at least 40 years, although it didn't become severe until a few years ago. Before that, it was just an occasional nuisance. Now I need to take something (I take kratom) every day or I wouldn't get any sleep, or even much time to sit down and relax.

About 30 years ago my allergies suddenly got much worse, and instead of just congestion, I was having frequent and severe asthma attacks. My doctor finally recommended allergy shots, and I've been taking them now for almost thirty years. As far as the asthma and congestion, the shots have been the magic bullet. It's been years now since I've had a severe asthma attack.

And so, for years, I was taking allergy shots and my RLS stayed mild. I think perhaps people are getting the shots mixed up with the medications. My understanding is that the shots give you a little bit of the substance you are allergic to, so you build up a tolerance to it, whereas the medications target the histamines in your system.

I don't know why my RLS suddenly got so severe (age, probably) but I am sure it has nothing to do with the allergy shots. I know every case is different, but you might not want to be too quick in stopping the shots, as, truly, they can be wonderful. The medication is another thing, but the shots have made it possible for me to take very little--often no-- medication at all.

I'm sure you've thought of this, but--since I was a teacher for 37 years--I have to mention that you really need to make his school aware of this issue. You might want to get him on a 504 plan (for children with medical issues). The plan can make it clear that his teachers must let him walk around when he needs to. The school will probably need some education into RLS/WED

Good luck to you.

Our situation is complicated by DiGeorge Syndrome. My son has a deletion at the 22 chromosome. His immune system is suppressed and is on immunization therapy for that reason. He has been allergy tested and unfortunately allergic to everything that grows in our state. We struggle with balancing his wellness and now his exacerbation of RLS. I noticed a Physician that is near our area that this site has listed. I have gone as far as contacting the Immunologist at Duke University and CHOP who specialize in DiGeorge and they say it is a common problem but no further information. I have always though this too was seasonal for him and maybe the answer is to take him off everything and see what happens. We see his Immunologist tomorrow and still waiting on Ferritin level. Hoping to relieve the symptoms without additional medication. Any suggestions or information would be helpful.

Thank you everyone for your input. This is helpful in sorting things out. I appreciate all the information.

Anna, I am not home right now, but I think there is a chapter on children and WED/RLS in the book that Polar bear mentioned. There is also a pamphlet at the Foundation; you may need to be a member to obtain it.

We've got all his labs back today and evertyhing was fine. Immunologist decided to take him off the Zyretec and Nasonex for now until we can figure things out. Continue with Immunization therapy and add another inhaler for his asthma. We've had 4 quite nights for the first time in 5 months however its hard to sleep when your expecting things to flare up at any moment. I will look for the pamplet that has been suggested. I read an article from the NIH on Pediatric RLS. I read another suggestion regarding a educational plan which we have for his medical problems and the teachers so far have been very understanding about him needing to move or stand in class. I'm hoping by reducing the medications will help us hold off on starting the Neurotin. Fingers crossed.

Hello and welcome. I can't add much to what's been said except to wonder about your child's exact results. With adults the ferritin level can be within the normal range but still be a problem if not in the higher end of that normal range. Maybe the lab reports show it or you can ask the doctor where in the normal range your child is, and if the same principle that applies to adults applies to children.

Well, that sounds as if there may be a relationship! I hope that it really does continue to help.

Unfortunately we are back to where we started. Up all night with leg pain. It's heart breaking to hear your child scream in pain and say he hates himself and he's stupid. I can't seem to relieve his pain unless we turn lights on in the room, walk around the house and create a distraction with the television. This is not conducive to a productive school day when he's only getting 3 hours of sleep. It is apparent at school he is having difficulty. We now are left with only one solution, the Neurotin. I was wondering if anyone experiences side effects from this medication and how long it takes to be effective. Would a sleep study be helpful? His Ferritin level was 52. He is on a vitamin with iron and has a decent diet. Taking the Zyretec and Nasonex away did not help. It seems the Oramed (prednisone) helped. Is this inflammatory? I feel helpless, discouraged, and sad for my son.

Dr Buchfuhrer's email is somno@verizon.net, if I didn't give it before. He may be helpful - at a Foundation event long ago I met the mom of a child he was treating.

Dr Picchietti (think I am spelling that correctly) is in Illinois - I think he specializes in children's WED.

Karla Dzienkowski is the new executive director of the WED Foundation. She became involved because her child had WED/RLS. You might try to call her or email the Foundation and ask to speak with her. Email the Foundation at info@willis-ekbom.org or call 507-287-6465.

Some people do have side effects from Neurontin. The hard thing as a mom must be worrying about what might happen to your child. The corollary is that many time there are no side effects. Or that there are some but they work out in a week or two. Unless you try, you will never know. I am not sure what they recommend for a child's ferritin level. In an adult, they suggest at least 100.

Per inflammation, there is some evidence to suggest inflammation is sometimes a factor. But, not always. That doesn't help much, does it?

This is so helpful and I appreciate the time you took to give me this information. I will try to connect with each of these individuals today.

AnnaM, I take Neurontin (gabapentin) in addition to my DA (Neupro patch). Initially I was given the gabapentin to help manage my migraine headaches, but when I changed WED doctors my new doctor increased the gabapentin dose to help me sleep more soundly. I take it 45 minutes to an hour before bed and I can definitely feel when it kicks in and I start to feel very sleepy.

As for side effects, I have only experienced two. The first is that when the gabapentin starts to wear off, I wake up. It has about a six hour half life, so that means that I have been getting up at 3 to 4A after about six hours of very sound sleep. Before the gabapentin, I was sleeping at least 8 hrs and did not feel as rested even though I was using the DA patches.

The second side effect that it has worsened my postural hypotension. If I get up too quickly after sitting down or laying in bed, I get very dizzy and have come close to fainting on a couple of occasions. I was used to this sort of thing happening, but for someone that has not experienced it before, the dizziness could become an issue if they don't figure out not to get up too quickly.