Helping toddlers

RLS 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.
trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

hi, welcome and very good luck with your precious child...
ive been keeping an eye on this very important thread as it is telling us so much about children and rls. i have a 5yr old girl who doesnt so far seem to have any of my symptoms and we have a baby on the way, so the more i know the better... just in case and for the benefit of others too.

it would be great if youre able keep us informed of how you get on. as you can tell by this amazing thread that hearing first hand experiences from heffs etc is sooo helpful.

it may help for you to print out this for the doctor to read..... but you probs already have it.

http://www.rls.org/publications/documen ... LS2005.pdf

also have you looked at the 'children with rls' sticky at the top of this section? there are some bits and pieces, but not loads on children with rls..

Hope you can share your journey with us so we can learn from your experiences.
warm regards

MyTwoSons
Posts: 2
Joined: Thu Oct 20, 2005 4:27 pm
Location: Wisconsin

Post by MyTwoSons »

Thank you Trev! And, yes, I'll be happy to keep you posted. Reading through all of the replies on this thread has given me at least a glimmer of hope that I might actually be able to sleep an entire night at some point in my life. I will print out the link (I read it but didn't print it) and bring it to the pediatrician when I can see her. She's been really great with both the boys since they were born and I am confident that she will do her best this time, too. I briefly read something on here that suggested videotaping your child at night and I though WOW! That thought had occurred to me a couple of weeks ago bit then I thought maybe I was just being nuts for wanting to see what happens to him while I'm not there you know? Now, I feel better about it and think that it could possibly help our pediatrician if she could see what goes on at night. As I said, I will keep you posted and will definitely be watching this discussion board from now on![/quote]

Heffalumps in the night

Post by Heffalumps in the night »

Hi My Two Sons,
If you can videotape your son, it can be a powerful tool. I feel for you. I don't think others may necessarily understand what your child is experiencing unless they see it for themselves. I took some video of Caroline on five different nights. Two nights I slept in the same room with her, but a different bed. I kept the camera ready and would turn it on whenever I would hear the legs start to kick the sheets. The other nights I videoed her in our bed when she just couldn't take her room anymore. I compiled a tape with different types of kicking. The repetitive kicking that happens sometimes before sleep. The annoyed kicking that she sometimes does when the urge to move wakes her up. The stretching of her legs in the middle of the night and so on. This way I had all of the different types of activities that I had witnessed at night even though they may not all happen in the same night.
I also kept a diary of nights and naps when she seemed to have a problem. If there was a significant event that day, I would note that as well. For example:
Ocober 12 Night: Caroline did not nap today. I heard her walking around her room for forty minutes after I put her down.
October 14 Dinner: Caroline was whimpering and kicking her legs during dinner tonight. When asked, she said her legs were "bothering her." I noticed that she seemed tired.
I would consider the nap a significant event b/c when Caroline does not nap well, she tends to experience a rough night. I would also note other daytime events that seem significant. Caroline's diary proved very helpful when I took her to see a sleep specialist.
Also would talk with your pediatrician about having your sons ferritin level tested.
By the way, for all, Dr. Durmer said he knows the doctor that came up with the suggested level of 35 for children and that it was a bit of a random number. Dr Durmer suggested in the 50's for Caroline as well.
We still have not started Caro on the Mirapex. The more I read, the more I fear it. Her brother has a well-child visit with the pediatrician tomorrow so I'm going to pick her brain to see if she has any other thoughts that I should consider. I have to say that at this point I am leaning to sticking with good sleep hygiene b/c I'm afraid of what medications can do to her developing body and mind.
Caroline now has the diagnosis, but I don't know what to do now for her. She is still taking her iron and will have her blood checked again in December. She still loves her Moonlight Path lotion.
Thanks everyone for being here for us.

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

Heffalumps in the night wrote:Also would talk with your pediatrician about having your sons ferritin level tested.
By the way, for all, Dr. Durmer said he knows the doctor that came up with the suggested level of 35 for children and that it was a bit of a random number. Dr Durmer suggested in the 50's for Caroline as well.
.


thanks heffalumps, i was going to mention the ferritin as it does pop up alot with children, but forgot :oops: .... glad youre on the ball!!

the new level is i nteresting... think it would be good to get a difinative on this one... not sure how we do this though..... any ideas? perhaps anne r becat know ... i remember them mentioning a doctor who is expert who we can email?

Heffalumps in the night

Post by Heffalumps in the night »

In a ferritin level posting in the general topics, I posted this:
Anne and all,
I heard from Dr. B and here is his response on my question (Cut and pasted from his e-mail response):

A ferritin level of 35 is the goal for children as determined by Dr. Dan Picchietti (who is one of the experts in pediatric RLS). However, as you child is very close to that goal, it is much less likely that raising the level will improve the RLS. When the initial ferritin level is much lower, the chances are better that treating it will result in improvement.

I hope this may help answer others' questions as it helped me.


However, it was never made clear in his response why the level for children is 35 where for adults it is 50 or higher. . .?

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

thanks heffalumps,

i did put that info in the children sticky post a while ago, but if its not correct then i guess it needs changing ... itd be good to get an agreed level, although i suppose its up to the dr treating in the end!?

kalars69

Preschooler with PLS

Post by kalars69 »

Welcome from me too!
Couple of things to jump in....
Serum Ferritin levels have increased for my 4.5 yo son with the supplements, and at the last checkup his levels had jumped from 14 in April to 25 August; just had them drawn again last week so I'll post when I find out. Our target is atleast 35 then we'll see how his symptoms are- recently seen decrease in wakings and disturbances - and reevaluate supplement. Maybe there is a truth to Dr. Kotagal's study (Mayo Clinic).

Other strategies to try that worked -before diagnosis was a weighted blanket (from OT or Special needs supplier); my son's is 10 pounds and he had it since he was 2 years. After he was asleep we removed it (too hot).
Good lUck! Kelly-Ann (and Grant)

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Re: Preschooler with PLS

Post by trevb »

kelly anne,
great to hear thoings are improving!!! excellent!!
its also so good to get feedback from you and other parents of children. it really helps with others who access this site with the same challenge. really appreciate your input and keeping us up to date with your progress., this thread is full of really good stuff!!

i was a child with rls and my parents used wieghted pillows which they say worked well for me... so good advice. (obviously some children may find it intolerable as it seems some rls sufferers cant cope with heavy wieght on their legs)

kalars69

Our Update (Iron & RLS)

Post by kalars69 »

I wrote back in August (message above) and thought I'd share latest.
We went Gluten Free for son's for behavior issues, while continuing on Iron supp & sz med. Significant improvement on behavior, rare instances of hyperactivity but attention span ahs only improved modestly. Still takes several verbal cues to get a 3 step task done (find shoes, put them on, let me know so I can tie)...on the right track.

Just went back for re-check, Ferrittin is up to 52, after 14 months on supplement! But sz's are back, so not quite sure how it all works out.

Kelly-Ann

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Great job getting the ferritin up. And how great that their is significant improvement in behavior! I'm sorry to hear that the sz's are back, though. Thanks for the update.
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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