Just joined hoping for help and advice for toddler

[Ali_Olivia]

Hi, my daughter is 2 yrs old and has always had trouble sleeping and sitting in her car seat. After having tried everything, the paediatrician sent her for a sleep study which showed some restless legs and periodic limb movement disorder. We started with extra iron which made a big difference in the first couple of weeks. But 6 weeks later we are back to normal. We are meant to continue with the iron for 3 months so I will see how it goes. Sleep has improved slightly but the car is getting worse. As soon as we start driving she has her legs out straight, toes pointed and waving in small circles. She becomes very upset and distressed and nothing at all can distract her. She will do this for the entire trip, she has always been hysterical in the car but this leg waving started about 9 months ago. We have tried many distractions, played with the car seat positions, used different car seats. But nothing helps. She has some scaring on the inside of her legs from the belt buckle even though I have sewn on soft coverings. We don't travel far but even a 5 Min drive to the shops is distressing.
Sorry for the long post, I was just wondering if anyone had come across this, is it part of having restless legs or something else entirely? I have shown videos to Drs but they just shrug and say it's behavioral, however my mum instinct knows it's not.
The iron did seem to help this car problem for a week before it became worse again.
I would love for my little girl to be comfortable I'm the car.
Thanks for your time and help it is very much appreciated!
Ali

[ViewsAskew]

Poor thing! And you must be beside yourself trying to help her.

There aren't many pediatric WED/RLS doctors out there. Dr Picchietti is one - he is in Champaign/Urbana, Illinois. But, you may be anywhere in the world! My guess is that if you showed the video to someone such as him, you'd get a different response. Dr Buchfuhrer - in Southern California - isn't a pediatric doc, but he does see young patients. He also will answer patient questions - his email is somno@verizon.net. It may be worth it to email him and ask if he'll look at the video.

A book that many of us have, Clinical Management of Restless Legs Syndrome, says the following regarding diagnosing young children:

"The child is observed to have behavior manifestations of lower-extremity discomfort when sitting or lying, with motor movement of the affected limbs..."

That seems pretty clear to me.

In terms of the car and car seat, if you sit her in a high chair or other such item in the house, does she do the same thing? If not, maybe it is different. On the other hand, we learn to associate things quickly when we are young. She may have had a few miserable longer trips in the car and now she simply associates the car/car seat with torture.

A few things you probably already know:
1. Absolutely no caffeine. That includes chocolate. (that's me being unhappy for her)
2. Sleep hygiene may help.
3. Iron therapy may help.
4. Children with WED often like heavy items on their legs - a heavy blanket, for example. I'm not sure if snug tights would help, but some adults find that compression stockings help. Of course, others of us find it makes things worse.
5. Warm baths help many. Some find that icy cold water makes the symptoms go away. You might find out, through a small wading pool for example, if one or the other is helpful to her.

You clearly already know 3 - she's taking iron. Since only 0.5% of children have WED, it's not well studied, however and much of this is guesswork. I can't imagine how iron could worsen WED - but it can cause upset stomach and/or stool issues.

[Polar Bear]

I can't add anything to what Views has said but would strongly suggest that you follow her advice and email Dr Buchfuhrer and attach a copy of your video. He is very good about responding.
My heart goes out to you and your little girl.

[badnights]

In her head, when she;s in the car, it's grief and agony; mom and dad should be calm and compassionate, she should be able to see, inbetween howls, a loving concerned face, and hear soothing words, but you have to accept without frustration that those things will never be enough on their own to lessen her agony. It's not something that can be soothed away. Unlike pain from a fall, or from the flu, it doesn't get better with a bit of time, there is no up and down, for the duration of time that she is in the car seat - it is all agony.

It would be nice to be able to put her in a sort of dog cage in the back seat to travel, with saftey straps that hold her inside it and a helmet to wear. Certainly less cruel to her if it could be made accident-safe.

Find ways of allowing her freedom of movement, without restraint, even during times we typically strap our kids up, like feeding and in bicycle carrier seats and shopping carts. Give her something to work with her feet - modify a toy that lets her use her feet - something like a tiny bicycle wheel to let her move the way she needs to during times she has to be confined to a seat. Modify all seats as much as possible to allow supported standing when she gets to be that old.

But the single most important thing you ever do for her might be to alter her diet. Did her symptoms start when she was born, or when she switched to formular from breastmilk (if she ever did), or after other foods were introduced? What were those foods?

Can you get her nutritionally tested? Some people are genetically unable to process certain nutrients or clear themselves of the toxins that we absorb daily; such issues are associated with neurological disorders. Some babies are allergrfc to the protein in their own mother's milk; many, many more are allergic to the protein 'casein' in cow and goat milk.

If you are breast-feeding, keep breast-feeding her, but maybe substitute one feeding for a super-nutrient-loaded "smoothie". Secoind thing, if you're breast feeding. is to chnage your own diet, making sure yuo do the same thing with veggies that you do for your daughter (below) & Cut out carbs and sugar. Try going gluten free and dairy free and record how you feel.

With the advice of your doctor, and as much research as you can do, give your daughter a large amount and variety of vegetables, in equal amounts green leafy vegetables, sulfur-bearing vegetables , and bright-colored vegetables and fruits. (S-bearing veggies include a few families, some of which are also green leafy veg: cabbage-kale-broccoli-chard-asparagus-mushroom-onion-garlic.) These make some incredible smoothies (well, mushrooms and onions not so much). Add coconut milk for fat (not Lite!), meat broth for the liquid; And - if possible for the next while, keep her gluten and dairy free.

This may be hard if she's bottle feeding, but look for a supplier of non-dairy formula. It must exist!

These are random thoughts popping into my head as I consider how the poor babe must feel, but I have taken a sleepoing pill and it has been telling me to stop for a long time. I know I have some good stuff in here, so I wil hit SEnd withuit edintg and hope I got most of it out before the meds too =k me over

I can cite supporting materila - someday - but I'll mention the Wahls Protocol. a book written by an MD who developed MS and declined to wheelcharir stage, then changed her diet (had been researching all along) and was walking with 2 canes within 3 months, and running and biking within a year. She still have MS, but she is living a normal life now. Since she's a medical doctor, she understands and explains how some of it workd.