Hi my 8 year old daughter has CSA and is bipap vented for it she also has huge RLS Episodes that last for weeks which are making her miserable and making her miss school. Her neurologist has suggested starting lamotrigine but has asked me to look at side effects etc. I can't really find the information I need so would love some opinions on treatment.
Thanks in advance Katie x
Hi katie, sorry to hear, it's awful to see your child go through this. My 5 yday old daughter suffers from episodes of it too and during a particularly bad one over Christmas I got lots of excellent advice on here. I don't know anything about meds just yet but just from trying lots of ideas from this forum we have managed to get it much more under control. You might have tried these things already but just thought if not they are worth mentioning. The things we did straight away which were game changers sleepwise were cutting out sugar and processed food along with hot baths at night with magnesium salts (you can buy a enormous bag cheap on eBay) we didn't have a bath so bought a bath barrel also on eBay (best £25 I've ever spent!) which can stand in the shower. Within a week she went from waking up screaming for hours at night to if she did wake, going back to sleep easily. It saved us! It's not easy with other kids in the house so we've had to do it all together and the hardest thing has been going to friends/family's houses and saying no to things but what I found was after doing it long enough to let her detox and let the symptoms die down (just a few weeks) we've been able to relax a bit for special occasions without too much trouble. We had been doing it for a few weeks when we were invited to 2 close friends bdays parties on the same day, I was dreading the fallout but it also felt like a good test so we let her eat what she wanted and had no repercussions. We have carried on the diet at home with odd treats out and its been ok. Raising agents were suggested to us as irritants and this would make sense as we were big biscuit fans, even crackers/crumpets and hot cross buns have them in which are all things we would tend to eat alot. I wouldn't even have said we ate unhealthily before and didn't consider us eating alot of unprocessed food, for some reason I never thought of those things as being particularly processed until I started looking at the ingredients in everything. She also started taking iron supplements at the beginning of Dec, I've been told iron levels for people with rls need to be higher than the average person, I think closer to 75 or 100 but someone else on here can prob confirm that. My daughter's were 18 when first tested and the gp didn't find it significant as they were in the 'normal' range. Just had a thought, cutting out dairy has also been suggested on here and it's also something that a friend was told to try by her homeopath for her daughters sleep apnea, she said it has helped alot. Its prob what we are going to try next as although the nights are ok now, shes still been getting 'itchy' in the morning and early eve and in the car. Stretching before bed seems to help, she loves it too as she gets to jump around and do gymnastics on the bed!! There are also some youtube vids with specific routines for rls. Audio books have been a massive help in distracting her in bed before she falls asleep and in the car, along with bungy ropes hung on the back of my seat, one around the head rest to pull on with her arms (she gets the rls all over) and one from the net basket for her to push down on with her feet (a tip from a friend who's son has adhd!). Sorry if you've tried this stuff already. I'm sure some other people will be able to advise about medications. There is an email I was sent with lots of good advice which I will forward to you too. It seems like diff things seem to work for diff people. Lots of luck finding the answers for your daughter xxx
Thanks so much for all the info it really means a lot. She is having blood works done to look at electrolytes and we have increased her water intake, audiobooks are a godsend on the mild nights as is a weighted blanket and pillows between her legs we also found a foot spa sometimes gave enough relief for her to sleep and massage her legs most nights before bed.
Bathing every night is really hard as after school and with her sleep apnea not being under control due to the RLS affecting her treatment because she is awake too much, she is miserable and we are literally dealing with melt downs. Her sleep apnea originates in her brain due to an undiagnosed neuromuscular disorder which were are still hoping we may have a name for soon.
I have never tried the bath salts so will also definitely give that a go. We do give her multivitamins daily but I will check to see if they have iron in them as that may be something extra we can try. I may also try cutting out processed foods as she struggles with holding her weight we do normally have to give her shakes which I know are full of processed rubbish to fatten her up but I may be able to find an unprocessed version or make it myself.
We are at the end of our tether with what to do and she told the psychologist the other day sometimes her restless legs make her feel like she wants to die. I feel so sad for her.
Thanks for all your help it means a lot ❤️
My goodness, my heart breaks for her, she has so much going on. I can't speak with any knowledge on her conditions but just from witnessing the difference in my daughter after making the dietary changes and from everything ive been reading on diet because of it i would def suggest it's a good place to start. Getting good things in her generally can only be a good thing. There is a diet called the FODMAP diet suggested in email I sent although it sounds like you would def need a dieticians input for that with your lil ones dietary needs. I would say from advise on here, getting her iron up to a good level, which means at least above 50 so higher than non rls suffers need should also be a priority and multi vits don't have enough to do this. My daughter is on an iron syrup called sytron 3 times a day, thats 3 doses of 27 mg so 81 mg per day. The wellkid vitamins only have 7 mg per day! If u can persuade her to at least try the baths it has an enormous effect on my daughter. If she gets it bad during the day I'll give her one and it calms her right down xx
What a story. And what excellent advice based on personal experience from weeniebean 👏🏻.
I just want to stress the iron. And want to give some info on how best to increase iron. First, have a complete iron panel done and ask and look specifically for ferritin. Ask/get te actual results, 'normal' is not good enough for people with RLS. Ferritin is about iron stores in the body. And RLS is linked to brain iron deficiency. Ferritin is the closest indicator. Get the ferritin as high as possible within the normal range. With oral iron you should be able to get the ferritin at least close or just over 100. The best way is taking an easily absorbable form of iron on an empty stomach, e.g. at bedtime, and e.g. in the form of iron bisglycinate aka gentle iron that causes less constipation. And take it once every other day only instead of the standard 3x daily. Through research it became apparent a few years ago that uptake is regulated by another substance in the body. If you take iron too often, only a small amount gets absorbed. When you take the iron only once every other dat far more gets absorbed and iron levels in the body increase at least as fast as with the 3x daily dosing - but with far less obstipation problems.
Stay strong. With the iron, diet and magnesium (epsom) salt baths I hope things quickly get much better for your daughter.
It's tough for a small child to be affected - but do realize that the growth demands for children can deplete iron stores and put the child in anemia condition that causes or contributes to the RLS. From Johns Hopkins..."The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." Have her iron status checked - specifically Ferritin levels - and don't rely on a "normal" level, get the actual numbers. hopkinsmedicine.org/neurolo...
Regarding the Lamotrigine (Lamictal) - it's a nasty drug commonly used with another antidepressant for Bipolar disorder - please review the side effects carefully. It is apparently also used for seizure control in children.
I found this article for the sleep apnea in children... sleepapnea.org/children-and...
Hi Thanks for the advice. Her neurologist is sure it is not Iron as she had bloods done which included a good look at iron for her titedness before her last polysimnygraph to ensure her tireness was not Iron related so they are sure it relates to her neuropathy and CSA. She has had a bipap for 7 years and started when she was 9 months old as her sleep apnea is severe she is currently going through gene testing for CCHS and half of the kids with this have severe RLS and PLMD which is what her sleep studies are showing.
I am however going to try a good it on supplement to make sure. The other treatments for RLS that we have looked at have sedating properties and Elsie is not allowed sedatives due to her condition so she mentioned lamotrigine but I like you don't like the look of the side effects. I may keep looking to see if I can find something else.
Thanks for all of your advice I really appreciate all of your time xxx
Just an FYI - I of course had no idea what I had when I developed Restless Leg Syndrome. My ferritin test came back at 49 - well within the normal range - Docs said "well there's nothing to see here!". Only after reading the Johns Hopkins website "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months." I had to school the docs - found my own iron supplement (Ferrous Bisglycinate Chelate) and the severe RLS went away after 3 months.
Hi Katie, i'm sorry to hear about what your daughter is experiencing.
My son was diagnosed with PLMD just after his first birthday. I too have severe PLMD however that was only diagnosed in my late thirties. I may also have RLS.
I realise that your daughter can't take sedatives. My son has been prescribed clonazepam and clobazam (both benzodiazepines) as these have been used safely in child populations for a long time. Iron can help but not always. My ferritin is in the 500s (and I take pregabalin) but still experience limb movement. It may be different for your daughter. As Lotte says, it's widely accepted that iron supplements are best taken every second day - along with vitamin c (as found in orange juice). Magnesium taken orally and added to a bath can help reduce symptoms.
I do notice certain food triggers can make things much worse for me (additives found in most sauces, msg and ice-cream are particularly bad).
Walking in the evening (even around the house) really helps when i'm experiencing RLS.
I do hope you can find something to help your daughter.
Not all Neurologists agree on medication, Ropinrole, Horiznt gabapintine etc. So, being young, I would get two or three Movement Disorder neurologist opinions. Be out right about seeking referrals for endocrinologist, MRI studies and other Tremor disorders referrals. The young often present with multiple problems and sorting them out early is essential. For extra reading, visit googls on Myolonus and Dystonia and testing as background information
Cpap for sleep apnea
RLS and now apnea
Gabapentin and PLMD, SLEEP
RLS - Suboxone - PLMD
