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 » Wed Nov 26, 2014 2:43 am

My son is experiencing some slight nausea around 330pm to 4pm. Is this a side effect of the Neurontin. He says he's a little car sick after I pick him up from school. Doesn't seem to last long. Will this resolve after he's been on the Neurontin?

ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Wed Nov 26, 2014 5:51 am

I did a quick Google search - and as soon as I typed "gabapentin n" the search box self completed nausea. Looks like it's a well known side effect. If you read some of these, they might help you know how to proceed.

https://www.google.com/search?q=gabapen ... channel=sb
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 » Wed Nov 26, 2014 10:12 pm

WOW! Got an e-mail from my son's teacher stating he noticed a big change and is more attentive. It's amazing how different he is with real sleep.

Hollybelle78
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Re: Child with RLS/PLMD

Postby Hollybelle78 » Thu Nov 27, 2014 1:33 am

I have had RLS since childhood but thankfully has only gotten worse later in life. My mom used to rub my legs and I would take a lot of baths. I take Neurontin and it has been a lifesaver. When I started it it made me very sleepy. I would have to take it around 5 PM so that it would wear off the next day. The longer I have been on it I can take it later in the day. I also sleep with a body pillow so I can elevate my legs some. It's odd that hot baths make it better but if I wake in the middle of the night it feels better to be cold. I take the covers off and turn the air down. But my world has been so much better with the Neurontin. Also, I can use Flonase and Nasonex with no side effects. I also use Vick's Vaporub if I get sick. So heartbreaking for you and your family. RLS can be so frustrating at times. Hope you find something to help!

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Re: Child with RLS/PLMD

Postby ViewsAskew » Thu Nov 27, 2014 9:26 am

AnnaM wrote:WOW! Got an e-mail from my son's teacher stating he noticed a big change and is more attentive. It's amazing how different he is with real sleep.


It makes you wonder how many children are thought of as disruptive or difficult when they really have other issues, such a sleep problems!
Ann - Take what you need, leave the rest



Managing Your RLS



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Re: Child with RLS/PLMD

Postby Polar Bear » Thu Nov 27, 2014 12:39 pm

AnnaM wrote:WOW! Got an e-mail from my son's teacher stating he noticed a big change and is more attentive. It's amazing how different he is with real sleep.


I am so happy for you :D :D
Betty
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Re: Child with RLS/PLMD

Postby badnights » Sun Nov 30, 2014 10:59 am

AnnaM what have your son's doctors said about his ferritin level? You mentioned that he takes a multi-vitamin with iron in it, but for many of us, that's nowhere near enough. I know that my symptoms worsen if I forget my iron pills, even if only for a couple of days, and I take two pills of 325 mg ferrous sulfate each (equivalent of 60 mg iron, I think).

WED bodies seem to eliminate iron instead of recycling it, or somehow otherwise have an iron dysfunction, and I wonder if he might experience symptom relief by taking more iron, enabling you to lower his dose of gabapentin. It's something to ask his doctors about - and if you're going to see Earley or Allen at Johns Hopkins, they're definitely the ones to ask, since they've done a lot of research into the iron connection in WED.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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ViewsAskew
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Re: Child with RLS/PLMD

Postby ViewsAskew » Sun Nov 30, 2014 8:56 pm

I do not know what the thought is on iron infusions....but about 80% of adults get some measure of relief. I just had my second. My first allowed me 1 week of slightly reduced meds, then that was gone. I was hoping that it created a slightly higher level and that the second infusion would build on it. It appears that has happened. It's only 3 days of reduced symptoms, so I'm not sure how long it will last, but I have been able to reduce my meds again, this time more significantly, I think. The Johns Hopkins team have done years of research on this - they definitely are the ones to talk to.
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 » Mon Dec 01, 2014 5:32 pm

badnights wrote:AnnaM what have your son's doctors said about his ferritin level? You mentioned that he takes a multi-vitamin with iron in it, but for many of us, that's nowhere near enough. I know that my symptoms worsen if I forget my iron pills, even if only for a couple of days, and I take two pills of 325 mg ferrous sulfate each (equivalent of 60 mg iron, I think).

WED bodies seem to eliminate iron instead of recycling it, or somehow otherwise have an iron dysfunction, and I wonder if he might experience symptom relief by taking more iron, enabling you to lower his dose of gabapentin. It's something to ask his doctors about - and if you're going to see Earley or Allen at Johns Hopkins, they're definitely the ones to ask, since they've done a lot of research into the iron connection in WED.


His Ferritin level was 54. We are cautious with medication because he has 1 kidney. I did contact Dr. Allen at John Hopkins, they don't treat pediatric patients. He referred me to a physician in Atlanta. Right now we have a treatment plan from our local pediatric neurologist. We started with 100mg of Neurontin and it appears to have worked however with the Thanksgiving break and able to actually sleep through the night and sleeping in, he has been hyper at bedtime. It has been enjoyable to see him come back to life an play with his brother and bike ride without being tired. He is having difficulty at night getting to sleep over the last 3 days. I think getting back to the school schedule will help otherwise the next step would be to increase his dosage to 200mg. We would like to hold off as long as we can.

I saw someone wrote in who takes theirs at 5pm. We may have to switch to this time also hoping the medication will start to take effect closer to his bedtime. I am happy to say he is sleeping through the night once he is asleep. I so appreciate all suggestions. This has been helpful in sorting things out for my son and our family. It is nice to be able to get in the car and actually not cringe.

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Re: Child with RLS/PLMD

Postby ViewsAskew » Tue Dec 02, 2014 2:45 am

Per Dr Allen, I was just wondering if they had any pediatric research concerning ferritin or knew of anyone who had. We know that 54 would be on the low side for an adult - but I have no idea what they know about children. That may be important right now regarding next steps.
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.

badnights
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Re: Child with RLS/PLMD

Postby badnights » Wed Dec 03, 2014 6:11 am

Maybe Dr Allen would be willing to answer your questions about ferritin in children? It can't hurt to try emailing him - I had his address at one point, but I think I got it off their website.

What a joy to know he's finding some relief. Insomnia is pretty common in treated WED, but hopefully it's just the holidays and lack of regimen. The gabapentin takes up to 2 hours to kick in (in adults).
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Wed Dec 03, 2014 9:40 am

I need to go back and look at the powerpoint from the webnair. I believe 40 was low normal for children and 50 acceptable.

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Wed Dec 03, 2014 9:43 am

Now that we are back on the school schedule, he has been going to sleep easier. We started his Neurontin at 5:30 with a hopeful bedtime at 8pm.

badnights
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Re: Child with RLS/PLMD

Postby badnights » Mon Dec 08, 2014 5:33 am

Ferritin of 50 was acceptable for children with WED, or just for children in general?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

AnnaM
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Re: Child with RLS/PLMD

Postby AnnaM » Fri Dec 12, 2014 9:47 am

Ferritin of 50 and greater is acceptable for children only. The minimal level increases with age. I found this on the webnair "Children with RLS".


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