My 9 yo son's Small Fibre Neuropathy Story.
 

Hi there :)

I had a lovely welcome from the introduction committee. Thank you so much. My 9 year old son, Demarco has had type 1 diabetes for 7 years. 12 months ago, I found him holding his feet up to a fan before bed. When I asked him what he was doing, he said it felt like he had lava flowing through his feet.

If you live with type 1 diabetes, you can't help but learn about long term complications. So when I saw what I saw and I heard what I heard, my blood ran cold.

12 months later, and his condition has been officially diagnosed as Small Fibre Neuropathy. He takes Amitripyline and Pregabalin, however there is still a very big pain window open throughout the day. He can't go to school anymore, so he is doing distance education/home school.

We have seen every paediatric specialist in Australia that can possibly help Demarco. The fact that his nerve conduction study came back normal, and that he was 8 at the time made every single doctor rubbish the idea that this could possibly be related to his diabetes.

One paediatrician told us that it was because his ligaments were growing and stretching and to take paracetamol 4 hourly.

When I came across NT, I had tears running down my face. I finally felt like we had found people who spoke our language.

We have a long way to go with managing the pain. The pain management specialist says "exercise, exercise, exercise" yet poor Demarco can barely last 2 minutes with shoes on. He can't even deal with a sheet over him at night. He is doing hydrotherapy which he loves, but sends his blood sugar plummeting.

I just wanted to tell you a bit about our situation. We are well and truly alone when it comes to support from the medical profession in Australia. I spend every spare moment researching neuropathy and various treatments.

Has anyone tried Benfotiamine?

I will be reading through as much as I can here on the Neuropathy page for the next few days. Thank you so much for contributing what you have, because it's the most wonderful feeling to discover that we really aren't as alone as I thought.

kate. :hug:

I just answered your thread at the Introductions forum ;)

If this is confined so far only at the feet, you might try soaking in tepid water with epsom salts. This provides magnesium to the tissues and improves circulation.

Diabetics lose magnesium thru the urine daily. This connection is not understood as to why, but it has been documented. So it might be a good idea to supply foods high in magnesium. Oral supplements are more problematic for children. I have a magnesium thread here:
http://neurotalk.psychcentral.com/showthread.php?t=1138
3 oz of unsalted almonds have 270mg of magnesium.
This website gives mineral content of many foods and can help you
with diet choices:
http://www.nutritiondata.com/facts/v...roducts/9873/2
This link is for edamame beans (a form of soy). These are very tasty and not expensive and supply good amounts of protein, magnesium and potassium. They taste buttery. Easy preparation too.

Also for anyone with autoimmune issues, exploring gluten intolerance is a good idea. In your country, there are many Celiacs, and an active Gluten free community. Intolerance to gluten may be acquired, or genetic. And one symptom is peripheral nerve damage.
This is a very comprehensive link to a member from this board, jccgf.
http://jccglutenfree.googlepages.com/
There are special sections on Diabetes type I and also peripheral neuropathy.

This is our Gluten forum:
http://neurotalk.psychcentral.com/forum13.html

jccgf (Cara) is very generous, so don't hesitate to PM her if you need further information.

You sound very dedicated to your son, and this is important, because in order to find a way to stop or minimize his pain, it will take effort and patience on your part. Much of what the members here do and share is not available from most doctors (they don't keep up on the research which is complex today). So copy things for them to read etc, because you will need them for testing, and advice about supplements safety etc with a youngster so young.

A comprehensive list of tests for PN is at
www.lizajane.org.
A Skin Punch Biopsy test (not done in many facilities,
but a mail-order kit is available from Johns Hopkins Hospital
Baltimore MD, 21205, USA call for instructions -
dept of Neurology 1-410-955-2227)
is the 'gold standard' for small-fiber, sensory, PN here in the USA.

Paim management education
 

For much of the time after my diagnosis, I searched for that magic pill, that silver bullet that would remove my pain forever. I did find a class through Kaiser Permanente (an American health care provider) where I learned hundreds of different ways to reduce (manage) pain. I have managed to incorporate 3 or 4 of them into my routine which will knock my pain down 1 - 3 steps. Never put it all away, but simply knock it down.

Everyone is different. I tried sleeping with a pillow between my knees on my side -- something other members of the class said was very helpful to them -- but not to me. People were there with different causes of pain and different levels of mobility.

Good luck with what is a life-long disability and sometimes bureaucratic struggle.

Cowboy

I am wondering if Demarco is on an insulin pump? Just a thought, that it may control his blood sugar the best. Also, on the hot tub, he may have autonomic neuropathy, which is a type of small fiber neuropathy. He won't regulate his temperature very well if this is an issue. There are some interventions for autonomic disorders but you probably need to get to an autonomic disorders center at some university.

No child should have to cope with this. Your son is in my thoughts and prayers.

Hi, first of all those quaks don't know what they are talking about, nerve conduction test can't test for the small fibre nerves, they are the ones responsible for the burning feeling, they should have done quanitive sensory testing for diagnosing obviuos small fibre damage, there is a better test as Bob mentioned called a skin punch biopsy but I don't think they do it here in Australia as far as I know.

If he can get his sugars into normal range [non diabetic range] he has a good chance of the nerves healing over time, I believe it's not only the high sugars but the low sugars also do damage to the nerves.
Supplements can also help the healing process, I swear by R - lipoic acic & GLA
[gamma-linolenic acid] at 480 mg daily, I also know other diabetic caused neuropathy patients which also say they feel much better by taking these supplements, the dosage for a child may differ so I would ask Mrs D about that.
I use to also take thiamine 100 mg x 3 times daily which did help the burning a bit as well, I never tried benfotiamine others here may be able to help you with that question.

Brian :)

Brian is 100% correct. I have very bad small fiber neurop. and normal EMGs and evoked potentials. It is the skin biopsy that was critical and also the autonomic testing, tilt table, thermoregulatory sweat test, QSARTS, valsalva testing etc. I do believe that a center has opened somewhere in Australia, maybe one of the Aussies has experience with it. I am in the US, midwest, and can't help with centers elsewhere. This child is too young to have such severe problems! Keep looking for help.

Your son is right - IT HURTS!
 

Lava flowing? A great description. And, here I've been useing the analogy of having my limbs dipped in 'french fry oil'! His is far better! Tell him that others understand. I complement him in that he has been better to describe that PAIN better than most! He is one SMART person!
You have two issues going on at the same time tho, and both can be devastating in their own ways.
First and foremost you have to/MUST get the type one diabetes under control. For an adult it's hard...for a kid who doesn't really understand? MUCH harder. Here is a reliable JD source that mite be useful?:
http://www.jdrf.org/
IF anywhere you live there are 'classes' available? Go to them, and Take HIM, too. I wouldn't be at all surprised if he isn't adopted sort-of by many participants. IF he likes some folks, they'd be good mentors for him and ease your burdens a bit.
Second, as others have indicated...certain supplements help in the healing processes, or, at least keep some things from getting worse.
Do keep us updated on his progress? He and you are far too young to go thru this alone! Hugs :hug:'! and hope always - j