Daughter with severe RLS

[Katielb1986]

Bi all a follow up post. My little girl aged 8 has severe RLS with central sleep apnea (suspected CCHS) She has no issues with iron or ferretin so the Dr has suggested anti convulsant medication namely lamotragine. Googling I can see gabapentin or pregabalin is given normally and cannot see Lamotragine as a used treatment. Is anyone using Lamotragine as I want to understand it a little bit better before i start givin it as a treatment. x

[Madlegs1]

One of the reported side effects is insomnia. Not a good start for rls.

I would suggest that you look at food intake before going for medications.

Another mother here recently, found that changes in diet were a big help with their childs rls.

Artificial sweeteners, high salt, processed meats, sulphites and so many more can all cause rls.

Otherwise Gabapentin or Lyrica could be tried, but I would be very reluctant to gi there if it were my child.

Magnesium tablets could help , given with the evening meal. About 100mg of mg citrate.

Good luck.

[Accipiter in reply to Madlegs1]

I'm going to strongly support Madlegs1, just because a doctor tells you to take something you do not have to do it.

I would implore you to seek all the alternatives before putting a child on drugs. If you are interested the collective minds here can give you a long list of different diets and supplements, physical treatments and management; even just to eliminate them as options before.

Magnesium, careful use of potasium, and citrate from garcinia cambogia is a good start. But these things will still take up to a few weeks to see results. There are a variety of diets, but can be difficult to manage.

[Katielb1986 in reply to Accipiter]

This has been an issue for years my daughter is 8. I have tried diets, blood tests a range of different supplements weighted blankets, messages every night a foot spa and baths. We have arrived at medicating after my daughter told a psychologist she wanted to take her life due to how miserable she felt with RLS. She was diagnosed with anxiety and depression and the neurologist felt it was time we consider the alternative or medicating. She suggested Lamotragine as it is the kindest of anti convulsants but as I could not find advice online about whether it is effective i decided to ask her. This most certainly was not mine or my daughters doctors first point of call.

[Accipiter in reply to Katielb1986]

Please don't doubt that we think you are doing your best, and there is no judgement. But with limited information we can sound presumptuous.

Everyone has their biases here because there is no good information with clarity on RLS, so we have lots of unchallenged views, mostly from experience. My bias is from experience with oxalates. Many posts I read on diets ignore oxalates, so if you have covered that, I will happily stand aside for others to help.

My only other contribution is treating this physically, which seems to be difficult for adults, let alone a child. Many people have success with simple stretches, compression, ice and heat. But I accept you learning, and then communicating could be difficult. Also it isn't as simple as doing something before bed, with best results during symptoms.

Many of us may be projecting, as the thought of having this as a child just pushes some sensitive buttons, as well as the alternative of being medicated as not much better.

I'm sure you will do your best, just as we are here to help if we can.

[Katielb1986 in reply to Accipiter]

Thanks. I think we are going to try the Fodmap for a while as we are halfway there so it may make a difference removing lactose and gluten for a while. We are also going to up her dose of magnesium. Watching her night after night breaks our heart and because she is not getting her bipap her apneas are also becoming less managed causingmore issues so it does seem like a fine line we are walking with no sides being something that will stop it as quickly as we would like.

Due to covid 19 lockdown and us being able to free up her routine and let her do things at her own pace. The symptoms have eased loads which is making us think about her routines too. Yes she is getting to sleep at 1am from 4 hours of RLS but she issleeping in until 11am the next day instead of having to get up at 7 and the symptoms and her behaviours over the last 2 weeks have dramatically improved x

[Katielb1986 in reply to Madlegs1]

Hey Madlegs We have already looked at food intake she eats homecooked meals hardly anyghing processed and is not allowed fizzy drinks etc. Her diet is very varied and full of fruit and vegetables. We alsl do not eat refined carbohydrates in this house due to my GI issues.

Her CSA is very much linked to school and tiredness. We notice a huge spike towards the end of term and the last few weeks before she breaks up are awful for her.

I was giving magnesium but only 150mg so I may play with the dose. Thanks for that.

Lamotrigine has been a last resort option suggested after years of suffering which is worstening rather than easing off and making my LO miserable. x

[Madlegs1 in reply to Katielb1986]

That extra information is helpful- thankyou.

I feel for you in this situation.

You have obviously travelled a long way in coming to this decision.

This is seemingly a much bigger issue than rls alone.

What are her symptoms, rls wise specifically?

As an elimination it could be possible to try a very short course of Pramipexol for less than a week ( to avoid withdrawal issues) if the symptoms cease promptly then it is a convincing pointer towards rls.

If no change ( apart from the strong desire to go down to the bookies 🤡) then unlikely to be rls.

You could email Dr Buchfuhrer at

rlshelp.org

He is a world expert in rls and will advise you for free.

Little yellow icon on opening page of his site.

Good luck.

[Katielb1986 in reply to Madlegs1]

Thanks for this I am going to contact the doctor, we are in the UK and i dont feel many doctors understand how it affects her. As she starts to unwind from the day she starts to move her toes repetitively she says the feel strange and the only way she can stop it is to move them. The move the night goes on her movements become bigger and go into her legs. Lying down is torturous for her so she paces to stop the feeling and as the night goes on gets pain in her legs because she has paced for so many hours. The horrible feeling she says stops when she is moving but as soon as she does stop it comes right back making her angry. At the point she normally starts smashing her legs against walls or hitting her head. We sit and rub her legs give her a bath and use a weighted blanket. When she has a flare up ot gets worse and worse each night until her body gives in to tiredness after days because she has had no bipap use and then she sleeps for pretty much a whole day.

She has PLMD in her sleel also this has been picked up on a sleep study but this does not seem to bother her. I do think the flare ups get worse due to her mental health as she almost fears the day drawing to a close and gets herself worked up and restless from about 2pm onwards. After she has had a flare up (usually a few weeks long) we then have to deal with weeks of anxiety about going to bed. We then have a few good weeks and start the cycle again. x

[Madlegs1 in reply to Katielb1986]

Definitely sounds like rls.

You are giving magnesium 150mg. This should help with getting to sleep. I take 100 mg citrate just before bed.

Melatonin can also help , but the doses prescribed are way too high. They should only be 200/300 micrograms, but the pharmacy can only offer 2 milligrams. I get 1mg liquid on the inet. The full dropper is a 1mg dose, so I take 3 drops ( equals 300 micrograms) under my tongue 15 mins before sleep time. Works for me.

Good luck.

[Eryl in reply to Katielb1986]

You say 'healthy diet of fruit and veg'. Thete is a school of thought which says that fruit should be restricted because many modern fruit varieties like seedless grapes, Bananas and some apples have been bred to contain high levels o sugar. She should not be drinking jruit juice either. Smoothies made with the whole fruit are OK, but nono more than one a day, and that should be the maximum fruit intake.

[Joolsg]

You say she has no issues with iron or ferritin. You need to check this. Results will say ‘Normal’ but for children with RLS ferritin has to be above 75. If below this figure supplementation might help.

[Katielb1986 in reply to Joolsg]

From advice here last time the doctor completed a test and shared it with me she was in a completely normal range for RLS being a child and had reserves. My Doctor informs me that my daughters CSA with Cheyne Stoke cuases a high prevalence (over 40%) of children to have severe RLS and PLMD with no real known cause x

[Joolsg in reply to Katielb1986]

I would still ask for the actual numbers. As the overwhelming majority of doctors (and neurologists) in the UK know very little about RLS- they are unaware of the impact iron and ferritin levels have on RLS. Normal levels are 7-140 in the UK for a child and your daughter may have levels of around 40 and the doctor will have said results are normal with reserves. I know I'm being pushy, but do ask again as raising her serum ferritin levels above 75 may help.

Studies at Johns Hopkins University in the USA ( leading RLS research centre) have shown that raising levels helps eliminate or reduce RLS in 50% of patients. She may be one of the 50%.

[Jphickory]

I’d suggest trying magnesium citrate. It has been such a great relief for my RLS that I rarely have a bad night anymore. I agree with the others... consider foods. Do you see any patterns of her RLS being worse after certain foods or drinks were consumed? I’d eliminate as much processed foods and sugar (that includes sugar drinks) as possible from her diet.

I have read that central sleep apnea can sometimes occur when serotonin levels are low. I believe I have personally experienced this. So you may want to research serotonin and how it can be a factor in cases of CSA.

[Katielb1986 in reply to Jphickory]

The CSA is very much linked to the sleep apnea and tiredness. We notice huge peaks towards the end of the school term (she barely sleeps the last week or two). We have tracked this over the last year with the neurologist. My daughters CSA is due to an inknown genetic cause the suspect CCHS but we are having trio wes sequencing done soon as she has muscular myopathy and low bulk density in her muscles too.

She does not really eat processed foods neither. I am a home cook and she loves this. Her favourite dessert it Apples with raw dood peanut butter and strawberries and she hates fries and chicken strips like most kids. She is also not allowed fizzy drinks x

[McMomof3]

Have you tried cbd oil? I am telling you. It has been a miracle for me! I use some with thc. Not sure what state you live in. But I take a dropper full. (Maybe less for younger people) but anyway. I get no high. Just relief. It’s amazing.

[Katielb1986 in reply to McMomof3]

I am in the UK I havent tried CBD but we bave to be careful due to her CSA she is not allowed anything that causes drowsiness x

[DicCarlson]

Look over the side effects for Lamotrigine. there is a Black Box Warning in the US for life threatening skin rash (don't google what that looks like!). My friend took it for bipolar - nasty - she got off it fast.

[Randfan]

For whatever it is worth, I have severe RLS. It manifests itself in every limb of my body at one time or another. I tried the Keto diet, went into Ketosis, was under 5-6 grams of sugar per day. It didn't help. So, maybe don't bother with it?

Also, I have tried CBD, one eye dropper at night. I am not able to even tell that I have taken CBD as far as relaxation or any effects period, including my target of whether it would work on RLS. My friends say I need to take it everyday and let it build up. I admit, I haven't done that........yet.

I am on Ropinrole 2mg and Gabapentin 300mg. I do my best not to take both, but baseline is I have to take the Ropinrole do to problems of ramping up or down and then experiencing mood disorders. Anyway, they work for me and other than a deep night's rest and perhaps a little groggy upon waking, no side effects. Oh, I am a pronounced snorer in all positions except my stomach. I am not overweight by a long shot.

I agree with the theme of doing one's best to try to find alternative ways to deal with RLS that are not prescriptive medicine.

Best of luck to your child and to all of us with RLS.