Paediatric RLS specialist??

[MumofT]

Any recommendations for doctors specialising in RLS in children? Preferably London but willing to travel. Prefably offering private appointments as we would be visiting from abroad (UK citizens but living abroad). Many thanks for any pointers

[Joolsg]

It’s difficult to find any specialist in RLS in London. Prof Choudhuri at Kings College Hospital doesn’t do private appointments and his NHS waiting list is very long.

I have heard good things about Dr Guy Leschziner who is at Guys hospital and does private consultations from London Bridge Hospital

londonbridgehospital.com/LB...

guysandstthomas.nhs.uk/our-...

I hope you find some help for your child.

[MumofT in reply to Joolsg]

Very much appreciated. I will investigate those options.

[Kaarina Administrator in reply to Joolsg]

I have a feeling that Prof Ray Chaudhuri does take private patients: kingsprivate.com/consultant...

[MumofT in reply to Kaarina]

Wow. That’s great to know. I will investigate that. Much appreciated.

[Joolsg in reply to Kaarina]

Wow Kaarina, that’s interesting. I called King’s several times in 2016 to get a private appointment with Prof Choudhuri and was told he didn’t do them as he was too busy flying around the world to conferences etc. I suspect it’s the usual NHS problem- the right hand not knowing what the left hand is doing.

Thanks for the link.

[Joolsg in reply to Kaarina]

Just found out Prof Choudhuri has only been doing private appointments for the last 18 months and runs 2 clinics a month which are usually very full but the waiting time is about 3-4 weeks rather than over 12 months on the NHS.

That explains why I couldn’t see him privately in 2016.

Sorry for blaming NHS.

He is expensive though - £600 for initial consultation, £300 for follow up.

[Pippins2]

Hi just a guess but I would think if there's a RLS specialist for children he /she would be based at Great Ormond Street hospital for children. I would contact them directly to ask but you usually still need a GP referral for a private consultation in the UK. I suggest starting by contacting Great Ormond Street (London ).

[MumofT in reply to Pippins2]

Much appreciated

[Milefulano]

My daughter also presented RLS symptoms. I would highly recommend getting her iron levels checked and address that. After a month of iron supplementation my daughter's symptoms are gone. Good luck.

[MumofT in reply to Milefulano]

Many thanks. Really appreciate your feedback. What was your daughters ferritin levels before starting iron? How severe were her symptoms? Would absolutely love iron to be the fix. We’re on 40mg supplement divided into two daily doses (iron sulphate). How long did your daughter take to respond? We started (incorrectly on 10mg) for 2 weeks and now have moved into 3rd week but on correct 40mg dose.

The paediatric neurologist here wants to put her on gabalentin but he has no experience of RLS at all. Just desperately want to do the right thing and would feel more confident with recommendations from somebody with good experience in the area.

[Milefulano]

OK. I dont remember the exact values but first step was bloodwork to find out and she was pretty low. Novaferrum 125 liquid supplement with 8oz of juice containing 100% daily vit. C. in the morning to ensure an empty stomach. Avoid dairy in the AM. It inhibits iron absorption. You'll need the juice for absorption and the supplement tastes bad. We did have her take gabapentin daily starting at 100mg 1 hr before bed at the same time. Iron takes a while to go up and we needed her to get some rest and not miss school and help her function. Ended up going up to 500mg. No problem. After 2 weeks at 500 mg we started goimg down on the gab to see if the iron was taking effect. Checking her symptoms. Then switched to a single 50mg iron tab to avoid iron toxicity in the morning by the same company. Symptoms are now completely gone. She takes a Flintstone vitamin with 15mg iron and thats it. We have a follow-up in March to check iron. If her iron is very low just go with the Novaferrum 125. Its very effective at bringing iron levels up. It's for grownups but its exactly what the doctor was going to give her anyway.

And there, my good man is your solution!

Please get back to me and let me know how its worked. I am very confident that it'll work for you if you follow this protocol with these products.

Any questions, let me know.

[Milefulano in reply to Milefulano]

Almost forgot. My daughters symptoms were pretty severe. Different from mine in that she also reported pain.

You WILL need to out her on laxatives right away because this iron does constipate. But in less than 2 months it was over.

[MumofT in reply to Milefulano]

Just to update you. We've been on the iron supplements a few weeks now. There is DEFINITE improvement - we haven't had the endless nights of crying and going crazy all night. We've had an occasional bad night of lots of restlessness and tossing turning and waking but no long bouts of pain/crying. She still can go for many hours with legs jerking/going rigid and what looks like quite disturbed sleep but not waking every few minutes. We will re-visit the neurologist soon and I will ask him to re-check her ferritin levels - I've read that ideally they need to be above 75 and sometimes oral supplementation has difficulty reaching that level. She was 38 prior to treatment. I'll keep you updated. Thank you so much for taking the time to reply - it's so reassuring to hear you had complete resolution. It gives me hope.

[Milefulano in reply to MumofT]

Great.

[LotteM in reply to MumofT]

Thanks for the update. I sure hope it continues to improve.

Make sure the iron and particularly ferritin levels are checked on a regular basis. Many people with RLS seem to ‘leak’ iron, and need more or less constant suppletion.

[Graham3196]

I sent a list of treatments, by Private Message, recomended by forum members but its adult experiences. I think you need to check out most of them with a specialist for a child. Many specialists will say that things like iron infusions and diets are useless. They don't have the experience to say that. Find another specialist, sounds like some good ones above.

[MumofT in reply to Graham3196]

Many thanks. Much appreciated.