RLS and school

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.
kcrowley
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RLS and school

Postby kcrowley » Sat Nov 05, 2016 3:18 am

HI all,

I am just wondering what if any, modifications parents have in place for their children who have RLS. I am in NY and my 8-year-old is in grade 3 which is the first year that kids sit for the state exam.

I am currently working with her school (which is extremely supportive of her RLS) to get a 504 in place so she can get up during the testing time (esp state testing time). I am wondering if any other parents have something similar in place. I am not 100 percent sure that school district is going to be as easy to work with to approve the plan as the school has been in developing it.

Any feedback is greatly appreciated! :)
Mother of a 8 year old with RLS/WED and Insomnia
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Think Different!

ViewsAskew
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Re: RLS and school

Postby ViewsAskew » Sat Nov 05, 2016 8:51 pm

I wish more parents would hang out here. Most come and ask for advice and then when they get it, they rarely check in again.

I would hope that they are going to be easy to work with...bit any 504 can be met with resistance, regardless of the reason it is in place. My husband has celiac and we know a lot of celiac kids and their parents. It can be easy or hard - depending on those in the school (you are in good shape there) and the district.

I feel so badly for your daughter (and you, as you watch her suffer!). I had RLS as a teen and it was hard - how much so it would have been if I'd been in grade school. I am guessing you've had her hemoglobin and serum ferritin tested. The Foundation has some good resources regarding kids and RLS; if you haven't seen them, they might be helpful.
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.

kcrowley
Posts: 11
Joined: Sun Jul 13, 2014 10:22 pm
Location: New York
Contact:

Re: RLS and school

Postby kcrowley » Mon Nov 07, 2016 10:57 pm

Viewsaskew - Thank you. And I agree, I wish more parents would to. I do believe it's more common in kids then everyone thinks!

So far so good on the 504. Its a shame hoe hard you have to fight sometimes for something so simple.

As for her blood levels she's checked every 3-6 months and gets supplemental iron.

If it wasn't for these boards (you do a great job as a mod!) and the RLS foundation (Karla and Faith are amazing) I would not know about some of the treatments (Like relaxis) and I would not have a child who slept 12 hours last night! Woot! Woot! :D :D:D
Mother of a 8 year old with RLS/WED and Insomnia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Think Different!

ViewsAskew
Moderator
Posts: 14543
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS and school

Postby ViewsAskew » Tue Nov 08, 2016 5:59 am

I am so happy to read your other posts about Relaxis - that is GREAT! Dr. Buchfuhrer wants me to give it a whirl and I've been reluctant, but I need to rethink this :-).

Thank you - all the mods here are such warm, helpful, and smart people. I am lucky to work among them. Without this board and the Foundation, I imagine it would have taken two to three times as long for to to figure out what to do than it did. I owe both a huge debt of gratitudel.
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.

kcrowley
Posts: 11
Joined: Sun Jul 13, 2014 10:22 pm
Location: New York
Contact:

Re: RLS and school

Postby kcrowley » Wed Nov 09, 2016 2:30 am

Viewsaskew - I will be the first person to admit that I was very skeptical about Relaxis. Even know I'm like how is this working??? But my daughter is sleeping through the night and even going back to sleep in the morning when she wakes up from an attack and outs it on. Since she was born she has never slept through the night expect for a handful of times (usually when she started a new medication). She has had a full night's sleep now for 13 days. Even she doesn't know what to do with the energy. And she has taken up a lot more reading. Which she always enjoyed but couldn't do easily.

I personally do not understand how it works. But it works and I'm amazed how different she is because of it. Especially with anxiety and just general mood. So much happier.
Mother of a 8 year old with RLS/WED and Insomnia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Think Different!

ViewsAskew
Moderator
Posts: 14543
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS and school

Postby ViewsAskew » Wed Nov 09, 2016 9:00 am

You can't argue with any of that!
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.

jul2873
Posts: 340
Joined: Thu Nov 15, 2012 7:32 pm

Re: RLS and school

Postby jul2873 » Sun Nov 20, 2016 9:34 pm

Hi Kcrowley,

I don't have a child with RLS but I have been a teacher for 37 years. Getting your daughter on a 504 is an excellent thing to do. It gives you a lot of power. If the school, or the state, starts to make objections--like letting her walk around will throw the timing off, or disrupt the other kids etc. just point out that perhaps the best solution would be for her to be in a private room with a tutor to supervise. That is a very easy accommodation for schools to make. It shouldn't even cost them much, if anything. If they refuse to accommodate her, then explain that you won't be able to have her take the test. Because testing is a high stress situation, and because stress causes RLS to flare in many people, including myself, you simply can't allow them to try to force her to sit still for hours at a time. Good luck to you.


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