Search found 12 matches

by kcrowley
Thu Apr 11, 2019 2:14 am
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: New member - 8 year old son diagnosed at 6 with RLS/PLMD
Replies: 18
Views: 20106

Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Greetings! First and foremost you are not walking this path alone. I am the mother of a 10-year-old who was officially diagnosed around age 6/7, and as I type this she is currently losing her mind at the idea she has to sleep tonight!!! My husband and I are presently exhausted and hoping she will ev...
by kcrowley
Wed Nov 09, 2016 2:30 am
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: RLS and school
Replies: 6
Views: 13640

Re: RLS and school

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 ne...
by kcrowley
Mon Nov 07, 2016 10:57 pm
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: RLS and school
Replies: 6
Views: 13640

Re: RLS and school

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 suppleme...
by kcrowley
Mon Nov 07, 2016 10:51 pm
Forum: Physical Treatments
Topic: Restiffic and Relaxis Information
Replies: 46
Views: 18178

Re: Restiffic and Relaxis Information

Thank you all for your touching words. While no one ever wants to see their child in pain we consider ourselves blessed that we have doctors that care and treatments that help her deal with her symptoms. I just hope that the more we share our daughters story the more other parents will get the help ...
by kcrowley
Sat Nov 05, 2016 3:54 am
Forum: Just Joined?
Topic: No progress yet
Replies: 43
Views: 6652

Re: No progress yet

I hope things are getting better for you! It is 11:30PM EST and I am reading and responding to the RLS forum boards and as I am typing I am feeling so terrible for everyone who is up because they are having RLS symptoms. The irony is that I am up because my RLS sufferer (my 8-year-old) is sleeping s...
by kcrowley
Sat Nov 05, 2016 3:18 am
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: RLS and school
Replies: 6
Views: 13640

RLS and school

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...
by kcrowley
Sat Nov 05, 2016 3:09 am
Forum: Prescription Medications
Topic: Gabapentin side effect question
Replies: 6
Views: 1145

Re: Gabapentin side effect question

My 8-year-old daughter takes gabapentin (currently 400mg at night and 100mg at day) and has taken upwards of 900mg of the medication. I am sorry that you are getting vertigo from it. I can tell you that she has never complained that she is dizzy. That said, I to have come to learn that the drug is a...
by kcrowley
Sat Nov 05, 2016 2:55 am
Forum: General Topics: RLS
Topic: Who is your favorite doctor?
Replies: 149
Views: 130748

Re: Who is your favorite doctor?

I have just joined and have seen many doctors who do not know much about RLS. does anyone know of a good/knowledgeable Doctor in the New Jersey/New York area? I piggyback on the last post because I noticed you are also looking for NY/NJ area Montifore Hospital Neurology Department Bronx, New York I...
by kcrowley
Sat Nov 05, 2016 2:51 am
Forum: General Topics: RLS
Topic: Who is your favorite doctor?
Replies: 149
Views: 130748

Re: WED/RLS Recommended doctors

Can anyone recommend a Doctor in Long Island, NY or New York City? I have an appt at Weill Cornell Medical College but not sure if I can wait another 8 weeks. Looking for a doctor to help me wean off Ropinirole. Thank you! Degan - I just came across your post, kinda by accident.... My daughter sees...
by kcrowley
Sat Nov 05, 2016 2:44 am
Forum: Physical Treatments
Topic: Restiffic and Relaxis Information
Replies: 46
Views: 18178

Re: Restiffic and Relaxis Information

My daughter is 8 and has been dealing with severe symptoms of her RLS since she was 2. (400mg gabapentin, 0.1mg clonidine, and melatonin at night and 100mg gabapentin during school) Over the course of the last 3 years I can count on two hands the amount of times she slept past 4:30AM before the sym...
by kcrowley
Thu Aug 04, 2016 9:39 pm
Forum: Prescription Medications
Topic: Gabapentin
Replies: 12
Views: 1542

Re: Gabapentin

My 8 year old daughter has been on gabapentin for 3 years. Her doses have varied from as little as 200mg to 700mg with her current dosing at 400mg at night which is a variation from 100mg at 10am and 300mg at night. Her dosing has varied as other medications have been introduced to help her. But wha...
by kcrowley
Mon Jul 14, 2014 10:58 pm
Forum: Just Joined?
Topic: Tired Mom - desperate for support
Replies: 3
Views: 995

Tired Mom - desperate for support

Greetings all - First and foremost I just want to say that my thoughts and prayers go out to everyone out there (especially everyone in the forum) who suffer from RLS/WED and to any parents of child suffers. I am going to do this post a little unorthodox. Information about my daughter and her story ...