This is topic Please help: 9 yr old RLS and Lyme in forum Medical Questions at LymeNet Flash.


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Posted by IckyTicky (Member # 21466) on :
 
My son was diagnosed with Lyme when he was 5 years old (he is almost 10 now)
He did have some abx treatment but the herx reactions were so overwhelming for him (every time he slept he would be up all night sleep walking/acting out his dreams) and we had do discontinue. He was only on abx for a year off and on and was likely born with LD.

Lately he has not been able to be still. His teacher called a meeting with us last week and says he can not keep still, is constantly moving his legs and being a distraction because of it.

He is a hyper child so we thought that was what he was talking about..BUT we kept him home yesterday and noticed that he was constantly moving his legs. Asked him to stop and he told us that his legs hurt when he isn't moving them.

I belive he has Restless Leg Syndrome.
Our whole family has LD and coinfections and no way we can afford to see LLMD anymore. Have not seen him in almost two years now.

Please.. what can I do? I can't stop crying.
My 11 yr old daughter is now having bad knee pain and swelling again and bladder spasms.
My symptoms have come back.. buzzing heel, tremor, nerve pain, fibro pain etc etc.
I am just so desperate to help my children.
 
Posted by Razzle (Member # 30398) on :
 
Iron deficiency makes restless legs worse. Has he been checked for this?

Zinc deficiency can also contribute, as can magnesium deficiency. Vitamin B12 also is needed for normal nerve function, and a deficiency can manifest as parasthesias (odd sensations; restless legs could be considered a specific type of parasthesia).

For me, when I have restless legs (can be a side-effect of medications, also), I find homeopathic Causticum 30C settles my legs down so I can relax. It usually only takes one dose (2 pellets dissolved under the tongue), and takes it about 20 minutes to kick in. Can be used as needed, no need to take this remedy regularly for it to be effective, and no concern about interactions with other meds/supplements.
 
Posted by IckyTicky (Member # 21466) on :
 
He has an appointment with our regular GP today and I will mention iron testing..but we cook in cast iron only and I wouldn't think he was low.

He is not on any medications right now and hasn't for a long time.

I will see if our health store has Causticum 30C (do you think it's safe for children?)
Also.. is there a certain kind of magnesium and will this cause him to have diarhea (he is in public school)

Thank you so much for your reply. I am just so worried.
 
Posted by Razzle (Member # 30398) on :
 
Homeopathy is very safe, for anyone of any age. A child could take the entire bottle and have no ill effects, unlike regular pharmaceuticals.

Homeopathy needs to be stored away from anything with an odor (and not in the bathroom). I keep my homeopathy in my bedroom...

To take homeopathy:

Dispense 2 pellets without touching them into the cap of the bottle. Dump the pellets directly into the mouth without touching the cap to the mouth/tongue and without touching the pellets with your hand. Maneuver the pellets under the tongue if they aren't dropped directly under the tongue.

Make sure to avoid eating/drinking/candy/gum/brushing teeth within 20 minutes before and 20 minutes after taking homeopathy. Drinking plain water (preferably filtered so it doesn't contain chlorine) is ok within the 20 minutes before/after, but nothing else is...

Best way to get magnesium into the tissues where it is needed is to soak in a warm (not too hot) epsom salts bath. This will not cause diarrhea.
 
Posted by IckyTicky (Member # 21466) on :
 
thank you thank you!
 
Posted by Lymetoo (Member # 743) on :
 
definitely try magnesium

RLS is usually at night .. so maybe he is deficient in something as stated above

Can you get some herbs to help treat the Lyme?

[group hug]
 
Posted by map1131 (Member # 2022) on :
 
Several years ago I was having not only restless leg but also restless arms and body every night.

Someone on this site highly recommended pycnogenol. I took it in high doses for a month.
I've not had an episode of of restless leg etc since.

Just did a search and sure enough one of benefits is the RLS. Certainly can't hurt to try this supp. In fact I seen some research that it also helps with cholestrol numbers, so I'm going to try it again. Not doing statins.

This sx has got to be embarassing for your child.

Pam

[ 09-29-2012, 11:02 AM: Message edited by: map1131 ]
 
Posted by IckyTicky (Member # 21466) on :
 
Thank you. He is having this at night..but very much during the day too.
I have had this in my legs AND arms as well. I can't stand the thought of my kids dealing with this.

I just got back from getting the magnesium and homeoopathic...I will look at the pcynogenol when I am next there. You guys are great. And yes, my son is pretty ashamed because it disrupts everyone around him and it just can't be helped.
 
Posted by merrygirl (Member # 12041) on :
 
if its nerve pain ome b vits might help. does it look like he is doing a weird dance?
 
Posted by merrygirl (Member # 12041) on :
 
look at this video especially when the boy is in the chair. its sydenhams chorea a lot of PANDAS/PANS kids have this. Its usually strep related from what I know.My son has PANDAS and Lyme and babesia
 
Posted by merrygirl (Member # 12041) on :
 
oops link

http://www.youtube.com/watch?v=vqu5RtDh9sw
 
Posted by merrygirl (Member # 12041) on :
 
If you have q's about PANDAS pm me. There is a study recruiting and its free
 
Posted by NEMOM (Member # 31370) on :
 
I had really bad RLS and the biggest thing that helped me was diet changes.

No caffeine-especially later in the day. Removing gluten also helped a great deal.

try some Epsom salt baths or foot soaks at night.
 
Posted by glm1111 (Member # 16556) on :
 
IckyTicky,

I am sure you have seen me post about parasites on a consistent basis ad nauseum. Have you checked the symptom list at Humaworm? Restless leg syndrome is one of the symptoms.

So are some of the other symptoms you have posted. PLEASE check this possibility out. Humaworm has childrens doses.

Gael
 
Posted by IckyTicky (Member # 21466) on :
 
Thank you to everyone! Glm: we do Humaworm every 6 months, us and our children and our dogs and have for a few years now. [Smile] I'm all about killing parasites!

Merrygirl: I don't know much about PANDAS but will check out your link. My son was diagnosed at age 4 with ADHD and ODD and was told he was on "the spectrum" because he does have sensitivity to light/sound/touch ..can't have his fingernails cut and has to sometimes wear sunglasses indoors. Almost like a mild form of aspergers. But I think it is all because of Lyme and co.

He did test positive for mycoplasma and so did I.
Oldest daughter for bartonella and youngest daughter for Ehrlichia.

It just makes all of this overwhelming for all of us.

His primary doc did say today that he obviously has RLS. She took blood and wants an Xray of his legs for some reason. She knows he is CDC+ for Lyme but I know she wouldn't treat it.
I am really wanting to try the natural route, he simply can not handle abx.
 
Posted by IckyTicky (Member # 21466) on :
 
And after seeing that video and a few others, no..my son doesn't do that dance. We all have involuntary limb movements but nothing that severe or persistant.
 
Posted by YinYang (Member # 36358) on :
 
I just wanted to reach out and send my support to you. As a mother to a 6 year old who had some school issues arise today, I know what it's like to cry and cry and cry and just want to make everything okay for your children.

We are also treating the whole family and slowly going broke because of it.

Hoping the homeopathy will help.
 
Posted by glm1111 (Member # 16556) on :
 
Icky,

When killing parasites, you have to be MUCH more aggressive than every 6 mos. It has to be continuous and ongoing until symptom free. Adding extra cloves to kill eggs and larva is very important.

You might also want to add some salt/c to the mix. It took me six mos STRAIGHT and doing lots of herbs and salt/c to get some of these parasites to let go.

Please reconsider. It could mean the difference in getting your children well and symptom free.

Gael
 
Posted by IckyTicky (Member # 21466) on :
 
Thank you for all the support everyone. I am a bit less teary now. Just..overwhelmed.

Glm: I thought so too but was told by the makers NOT to take the humaworm any more than directed.

Is salt/c okay for kids too?
 
Posted by glm1111 (Member # 16556) on :
 
I made the same mistake listening to Humaworm and it set me back. You can also do other herbs similar to Humaworm such as Hulda Clark.

Google curezone parasite cleansing for kids and natural remedys for parasites kids. I have read that salt/c is okay for kids.

I would go to lymestrategies (salt/c group)and pose that question to the owner of the web site. Mark Fett.

I think Metametrix does parasite testing and you can also run it by his docs on the off chance that an O & P test could pick it up.

Has to be run 3 different times. I would treat anyway even if it is negative. Just my opinion, not medical advice.

Gael
 
Posted by glm1111 (Member # 16556) on :
 
P.S. Also check out pin x for kids at the drugstore.
 
Posted by Lymetoo (Member # 743) on :
 
Is your son on any prescription meds?? Some meds cause RLS.

--and I TOTALLY believe that candida/yeast can cause RLS-type symptoms.
 
Posted by IckyTicky (Member # 21466) on :
 
He has not been on any meds. Last time was about 3 months ago for an eye infection, some amox. That's it.

Do they make candida cleanses for kids?
 
Posted by glm1111 (Member # 16556) on :
 
Check Humaworm for candida herbs...FYI, If he has parasites, chronic candida is one of the symptoms of a parasitic infection.
 
Posted by beaches (Member # 38251) on :
 
Any way to get your son and daughters in to see Dr. J???
 


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