My 9 yo old son has small fibre neuropathy
 

Hi!

Im Kate, my 9 year old was diagnosed with small fibre neuropathy two months ago. I must mention that he has had type 1 diabetes for 7 years, which has been very difficult to control. His neuropathy is a complication of his diabetes.

Which brings us to NT! I am usually very confident and upbeat, however, with a child of this age with this condition, there is NO ONE who understands or can remotely relate to what is happening. Even doctors can't believe that a child of his age had such a rapid onset of symptoms. I feel so isolated and alone. I am terrified for my boy's future.

He is taking Amitripyline and Lyrica for his pain-he has a reading age of 12+ and is advanced with his schooling but he I am now homeschooling him because he was simply missing too much school. His symptoms are still severe enough that he has 5-6 pain during the day, and then, of course, it is always worse at night.

I think we are both exhausted.

Im so grateful to have stumbled across this valuable little community.

Kate. (Demarco's Mum.)

Welcome to our big community of caring people. We're glad to have you both. There's tons of info here, so make yourselves right at home.

Demarco is a handsome name for a young lad. So sorry he has diabetes. My mom has it, at a late age, and it's a 24/7 ordeal. I can understand you both being exhausted.

Here's a link to the diabetes forum.

http://neurotalk.psychcentral.com/forum53.html

You'll find lots of supportive and caring people there who you can relate to.

Welcome to neurotalk.
 

And--you should come on over to the neuropathy forum as well--lots of very expert people there:

http://neurotalk.psychcentral.com/forum20.html

I'm sorry to hear about your son's predicament. Unfortunately, neuropathy, especially of the small-fiber variety, is very common among diabetics, and even among people without frank diabetes who have been diagnosed with impaired glucose tolerance. The doctors may think it unusual for a child as young as 9 to have such neuropathy, but from my perspective it's not that surprising, given that he has been diabetic for so long.

Getting the pain under control is obviously the first priority--and many find that it takes a combo of meds to do so. Then, as much attempt at glycemic control should be made as is feasible. And, a program of supplements for nerve support and healing should likely also become a part of his treatment (B and D-vitamins, lipoic acid, possibly carnitine and co-enzyme Q10, depending on his metabolic profile).

Our vitamin/supplement forum might also be a good place to peruse:

http://neurotalk.psychcentral.com/forum20.html

Welcome to NT, Kate!

As you can already see, you're not alone anymore. I hope that helps.

Between being your son's Mom, nurse and teacher you are carrying a heavy load. You are a super, fabulous parent, but I wish you had more help. Joining NT is a great first step. Now, can you take it further?

Have you reached out to get some respite care? You sound like a pretty together lady and because of that people around you might not have realized that you could use a hand. If they knew, you might find a teacher eager to do some tutoring, a neighbour happy to pick up your shopping or a relative willing to play cards with your son so you could have an afternoon to rest. :Zzzz:

Since my accident, I've discovered that people are often delighted to be able to offer tangible assistance - but they need to know that you need help. Try and build yourself a support system: you and your son are in this for the long haul.

Of course, we at NT are always here 24/7 when you need a laugh or a cry or just the reassurance that you're not alone.

Cheers:hug:

Welcome to NT, Kate.

We have a peripheral neuropathy forum here. But I don't recall a youngster ever posting here.

There is exciting and useful information being implemented in medicine today regarding Vit D. Many people (it is thought at least 1/2 of the population) may be very low in this vitamin, which is not really a vitamin but a complex molecule that has neuroimmunological actions.

In Australia they are starting to test and treat this:
http://www.abc.net.au/catalyst/stories/2514231.htm

In USA there is also a beginning movement to fix this problem.
Please watch these programs too:
http://www.youtube.com/watch?v=bsxXzfowOtk
http://www.youtube.com/watch?v=TQ-qe...eature=related

We had a poster Mark at PN here who had a neuropathy that was body wide. Finally he had his D levels checked, and started supplements and within a month his symptoms were gone.

Diabetes type I is connected to low Vit D status. So I would strongly suggest you investigate this with your son's doctors.
There are other supplements for diabetic neuropathy, but I have never seen any papers done on children as yet. So going there is problematic dose wise, etc. I'd check the Vit D issue first, as it might really help.

I do not know Australian law, In US a federal Law makes it mandatory a teacher comes to your house, hired by local school board for 10 hours a week and provide education. That is US, do not know Australian law. I did this for years. Kids liked having a different face and activities and another human focused on just them, me and mom often sat with a cup or tea or coffee afterwards with me, good for us both (I was a mom kinda isolated from others myself). If Australa does not have this, try getting someone to see you both. I neever had a kid I didn't really like, both kid and mom knew this.

Welcome to NeuroTalk Kate! :Wave-Hello: As you see, this is a great community with lots of nice folks.

I hope things will improve for your son soon. Take care. :hug:

Welcome to NeuroTalk. Great to see you have come to be with our loving group. There are a number of friends will to assist as we can. Just let us know how we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Hello Mrs D

You have been extraordinarily kind and helpful. Thanks for directing me over to the neuropathy site. I have been equally well looked after over there.

Demarco takes Vit D drops as part of his supplement regime. I appreciate the Australian info!!

Many thanks
Kate

Here is a new article of interest regarding children and Vit D.
It is just up in our Health News forum today.

http://news.yahoo.com/s/ap/20091026/...vitamin_d_kids

I am glad you have covered this base already. Now the only question is .... is his dose adequate for the job? (as the newest research becomes available, one never knows if their doctor is up to date).