New Introduction and Vit C queries

[Guest guest]

Hello!

I'm a 38 year old female, with CMT1A, diagnosed approximately aged

12, with abnormal feet and gait noted from age 4ish. I live in

Manchester in the UK.

I've never joined a discussion group before as I've tried to avoid /

deny having a disability until the last few years, when

deterioration in my mobility and increasing pain has lead me to

acknowledge my limitations. I'm currently recovering from a pantalar

ankle fusion done 7 weeks ago.

My husband and I have had our 2 sons, aged 2 and 9 months, tested so

as to be advocates for them as/when any problems should arise. I

know things have moved on since I was diagnosed, but my impression

was that the surgical treatment I had when I was younger was of

limited use to me, sometimes performed by surgeons 'having a go',

rather that specialists with particular CMT expertise. I am a new

mutant for CMT1A and my younger son has inherited the characteristic

chromosome 17 duplication.

I know some people may disagree with this early testing, but it may

have given us an unusual opportunity to treat our affected son

before he develops symptoms. Finding out that he carries the

duplication has encouraged me to review the literature. I've found

out about the potential therapeutic benefits of Vitamin C and have

decided to take this myself at the upper recommended adult limit of

2g/day.

There is an upper limit for ages 1-3 of 400mg. We plan to start our

son on this dose soon. Does anyone else have experience of giving

vitamin C to such a young child? I'd be interested to know how much

vitamin C adults are taking and how quickly any improvement may be

expected? Have people suffered from gastro-intestinal side effects

at such high doses?

I'd really appreciate any help,