Child with RLS/PLMD

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Sat Nov 15, 2014 12:38 am

Thank you so much for your reply. This is what I need to know. We gave it to him at 6:30 to make sure he would not have an allergic reaction but I will definitely extend that to bedtime now. Thanks you so much

Rustsmith
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Re: Child with RLS/PLMD

Postby Rustsmith » Sat Nov 15, 2014 12:59 am

Whether he gets the drowsiness effect or not will depend upon the dose. When I was taking it just for the migraines, I was on a lower dose. I got bumped to a slightly higher doze for sleep with the instructions to slowly increase until I saw the sleep benefits. Unfortunately, the dose that is most effctive for sleep is also the one that causes the blood pressure issue.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Sat Nov 15, 2014 4:23 am

I rec'd a reply from Dr Buchfuhrer. He gave me a contact at John Hopkins. I will be giving him a call next week. Thank you again

ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Sat Nov 15, 2014 6:03 am

There are several excellent WED doctors at Johns Hopkins. You'll be in good hands there, I think.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Sat Nov 15, 2014 12:53 pm

After starting the Neurotin last night, we had the most wonderful peaceful nights. Watching him sleep peacefully was a beautiful moment.

Rustsmith
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Re: Child with RLS/PLMD

Postby Rustsmith » Sat Nov 15, 2014 3:21 pm

That is wonderful news!! I hope there are no objectionable side effects so that this can be a long term treatment.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Sat Nov 15, 2014 10:41 pm

AnnaM wrote:After starting the Neurotin last night, we had the most wonderful peaceful nights. Watching him sleep peacefully was a beautiful moment.


THAT is the best thing I've read or heard all day. Maybe all week. Here's hoping for many, many more.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Sun Nov 16, 2014 5:21 pm

Hoping the Neurotin is going to be a long term treatment. Last night, another good night with only a brief 5 minute episode. I need to get this boy back to his own room at night. Maybe we can start to have "normal" nights without playing musical beds for the whole family. Looking to make an appointment with a Neurologist at John Hopkins this week to manage this for us. I have a feeling we will need another solution in the future. Watched the webnair yesterday for RLS in children. Very helpful. It's amazing how different our son is when he gets enough sleep. Happy, chatty, brain is lite up, unlike the description by the teacher tired,uninterested, doesn't participate, can't tell if he's paying attention. Had to impress upon this teacher how he would feel if he only got 3 restless hours of sleep a night for 5 months, no fun for him or the family.

ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Sun Nov 16, 2014 11:58 pm

Others seems to have a hard time understanding! I wish there was a way to instantly have people "get it", but alas, doesn't seem so!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Tue Nov 18, 2014 5:46 am

Learned a few things today. The 2 recommended MD's who specialized in RLS at John Hopkins treat only adults. I was referred by them to a MD in Nashville TN. I think however after reading expert advice through medical journals and webnair we are on the right track. My question at this point is....can we take a medication break at some point to reduce the chance of augmentation? My son's episodes seem to be seasonal in nature. Is it possible to wean him off of the Neurontin during spring and summer when his RLS isn't so active? Any advice from the group would be appreciated. Are there withdrawal symptoms from Neurotin?
Last edited by AnnaM on Tue Nov 18, 2014 5:48 am, edited 1 time in total.

ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Tue Nov 18, 2014 9:44 am

The very good news is that there is NO augmentation with the drugs your son is using. So, nothing to worry about there.

But, if his symptoms are better at times, there is no reason to keep him on medication (at least a full dose) if it's not needed. You do need to titrate down to stop the drug ad there are possible symptoms (as with most drugs). Most of us here have not had difficulty.

One thing to watch for - it doesn't happen with many people (and this is good), but a small percentage of people taking gabapentin do experience suicidal ideation. Milder side effects include depression. As with many of these drugs, the percentage of people who experience these side effects is quite low, but they do happen and when it happens it can be very scary. I'm not trying to worry you! I think it would be important to watch for mood changes that are different from how he expresses tiredness and WED. You might ask your son something age appropriate - like to tell you if he seems sad or doesn't seem to like anything anymore. Watch for behavior changes that might show he is depressed - angry behavior, acting out, not wanting to participate, etc.

So sorry the JH docs do not deal with kids. Dr Picchietti, a pediatrician in Champaign, IL does, but it sounds as if you do not need him.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

AnnaM
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Joined: Sun Nov 09, 2014 3:47 pm

Re: Child with RLS/PLMD

Postby AnnaM » Tue Nov 18, 2014 4:21 pm

Thank you for the information on Neurotin. I am blessed to have found this site. This has been the most helpful information I have found in years.

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Re: Child with RLS/PLMD

Postby Polar Bear » Sun Nov 23, 2014 1:50 pm

AnnaM wrote:Thank you for the information on Neurotin. I am blessed to have found this site. This has been the most helpful information I have found in years.


I am just catching up on posts - this comment is wonderful.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

AnnaM
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Joined: Sun Nov 09, 2014 3:47 pm

Re: Child with RLS/PLMD

Postby AnnaM » Sun Nov 23, 2014 5:49 pm

Each night has been wonderful since starting the Neurotin, it has been over a week. We have noticed a reduction of symptoms during the day as well. My son is happy and full of life again, however I fear this will all go away and it's too good to be true.

ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Sun Nov 23, 2014 11:33 pm

AnnaM wrote:Each night has been wonderful since starting the Neurotin, it has been over a week. We have noticed a reduction of symptoms during the day as well. My son is happy and full of life again, however I fear this will all go away and it's too good to be true.


YAY!!!!!!!!!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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