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Daughter newly diagnosed

Hi…my daughter was diagnosed last Friday after suffering blindness in one eye which we now know is optical neurosis. An MRI revealed brain lesions. Various blood tests, Lumbar punctures etc followed. Obviously it has been an extremely traumatic week with a roller coaster of emotions especially due to her age. I can’t help feeling guilty…I am particularly concerned that lack of vitamin D could well have caused it as she has always disliked the sun due to being fair skinned. Also she is a fussy eater and does not have a very healthy diet despite my efforts to encourage her. Blood tests showed her vit D levels are low. I wondered if anyone else has a child or teen with MS…I know it’s very rare to be diagnosed so early. I am very worried about what the future holds. Thanks

hi naomi

it really must be hard for you because as mums we wish we could have their illnesses for them.

however there is a huge range of treatments available.

help her to research the disease modifying treatments.

also there are non-drug related therapies that she could try.

i have hyper barric oxygen therapy (HBOT) and it’s great.

this is available at many ms therapy centres.

you could go along and have one of the therapies your self.

carole x

Thanks Carole…I will start looking into therapies. The HBOT sounds good…at the moment she isn’t in any pain but it’s very early days and it’s a good idea to know what’s available for the future x

hi naomi

there’s also LDN to try but read up on it first.

it is Low Dose Naltrexone if you want to google it.

it might not be appropriate for a young person but it may be.

good luck

carole x

Hi

I doubt very much that there was anything you could or should have done differently to avoid MS for your daughter. Yes, vitamin D does seem to play a part in MS, but we’re all told to stay out of the sun, so actually she’s probably been more sensible than many young girls. And it’s not likely she could have topped up her vitamin D enough by getting out in the sun more. Equally, kids are fussy about food. You can’t say that healthier eating would have made a scrap of difference.

So many people with MS also have a deficiency of vitamin D. You’ll need to check with her neurologist how much she should take as a supplement. Adults are usually advised to take 5000iu (international units) but it may be different for younger people.

It’s probably just pure bad luck. And the fact that she’s young makes it even sadder. But then there are so many disease modifying drugs nowadays, the neurologists will be wanting to get her on a good DMD as soon as possible. And it’s likely that she’ll be able to get fitter and stay fit and healthy for as long as possible.

Don’t feel guilty about her diagnosis. There’s no sense that my mother could have done anything differently, and the same is true for you and your daughter. All you can do now is to help her live as well as possible now.

Sue

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Thanks Sue. She had been prescribed vitamin D now…the doctor said her level was 16 …I don’t know if that means anything to you but he said it was low. Nothing has been said yet about DMD. As it’s early days the advice seems to be wait and see. Naomi

Hi Naomi

Its a very tough time for you and for your family. It really is an awful diagnosis for a child and awful for the parents who can feel helpless. I know - we went through it a few years ago when my 12 yo boy was diagnosed. He has probably had the condition since 7 when he had his first episode - were initially told it was ADEM which is a similar condition but one that is supposed to involve only a single episode!

First off, stop torturing yourself over Vitamin D or food. These things happen and it is not your fault.

In terms of therapy, your neurologist is probably best placed to advise - I am assuming that you are happy with the one you are seeing. We had complete confidence in ours but because it is so rare in young kids, he still sought a review from an international expert in Canada! Our young lad was put on Rebif (interferon) which is injected, using a special injector, 3 times a week. The injections can be sore and there are often flu-like symptoms a few hours later. These can be fairly easily managed by taking a bit of paracetomol after the injection and also doing it in the evening an hour or two before bed. Then he generally sleeps through any side effects. Might be worth considering a counsellor for your child at some point - it is a difficult diagnosis for them (and you) to come to terms with and having a professional to talk to can be helpful.

Thankfully no episodes now for about 4 years and he lives a perfectly normal live. As he is hitting late-teens some difficult life choices are beginning to surface - compatible choice of career, where he can live/travel, etc, but for now life is fine.

My daughter was diagnosed last year and has had another two recent relapses. Sometimes she is accepting this illness and other times not. She is trying g to buy a house organise a wedding and would like a family which I feel all increases her stress any advice

I would suggest that your daughter does everything she wants to do if she is able too but plan her days so any activity is followed by a nice rest. And to delegate jobs she can trust others to do.

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My wife was diagnosed with MS in 1997 and I am her sole carer. I have recently written a book ‘The Grace of God and Multiple Sclerosis’ I am not sure whether this is the right medium to promote my book, but I do feel that MS carers wil benefit from my experience. [Edited]