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My son *might* have MS

Hi :slight_smile:

On Thursday I took my 6 year old son to hospital for an ophthalmology appointment as he has speech delay etc so the general opticians find it difficult to get a true prescription. He has been having eye tests since birth (he was a preemie) so I wasn’t particularly worried, I thought we would be in and out within half an hour but that wasn’t to be…

They decided to do some drops (we’ve had them a few times in the past so whilst a PITA nothing new). When they tested his eyes the consultant became quite concerned and the test took a lot longer than normal. We were then sent to have some photos done of the back of my sons eyes… Back to the consultant who very quickly said that the nerves at the back of my sons eyes are going wrong and he would need an MRI (which he’ll have to be sedated for) at another hospital - when I pressed what is wrong he mentioned that there is a chance my son may be developing MS :confused: To say I am still in shock is an understatement… My son has had head CT scans done in his first two years of life and the consultant said all was clear then, and previous eye tests have been fine which is apparently more worrying as if he had been like this since birth it wouldn’t be so much of an issue?

I really wish he had given me some information to take away as I didn’t even make notes! All I know is that I’m waiting to hear when the MRI will be, and his sight prescription has increased another “+3” in both eyes in the space of 6 months? The consultant did ask if he had been having headaches which he has but not severe :confused:

Has anyone else been through similar? I feel so lost…

Oh dear Sarah

That does sound very difficult to get your head round. It’s so unusual for children to be diagnosed with MS.

I just read your post and looked it up. This is what I found: https://www.mstrust.org.uk/a-z/childhood-ms

The MS Trust as well as the MS Society have a lot of information which can be relied upon. Try to avoid searching the Internet for information as it’s too easy to be led astray.

I hope for you and your sons sake that you get answers very quickly to what is wrong with your child. It must be so very worrying. And I do hope the answer is not MS, but instead something easily curable.

Sue

Hi Sarah

Its a very scary time for you. We went through something similar with our son. When he was only 5, he complained of severe headaches. After a few rounds of antibiotics, he was eventually admitted to hospital for more extensive testing. The CT scans showed nothing and it was only when he had an MRI that lesions in his brain were detected. The testing including various opthomology tests. We initially received a diagnosis of ADEM. It is a condition that is similar to MS but it typically presents with a single episode and does not repeat.

However, our son went on to have further episodes in subsequent years and was eventually given an MS diagnosis. Optic neuritis (inflammation of the optic nerve) appears to be a relatively common manifestation of MS and our son did have this with some of his episodes. Our son started on Rebif (interferon) about 4 or 5 years ago and, thank God, has not had an episode since he started. He is living a perfectly normal life (apart from the nuisance and pain of the injections, which he hates with a vengeance!).

It may be that you will not be given a definitive diagnosis on the basis of the current episode and they are probably not likely to start any disease modifying therapies (DMTs) unless they see repeated episodes.

Even if you end up on this road, and I sincerely hope you do not, the strides being made in the research and medications to treat MS are extraordinary. Even in the relatively short period that we have been living with the diagnosis, several new medications have been launched and lots of news of exciting new research. The horizon for newly diagnosed MS cases is much brighter today than it was 20 years ago, even 10 years ago.

Good luck to you and your son whatever happens!

Hi Sarah

I am not sure how thinks have developed for your son since your past last year.

I outlined our experience with our son in my earlier post. Just this week we go amazing news: a new test has confirmed that my son has MOG Antibody Disease which mimics MS but seems to be a much less frightening condition.

If your son has been diagnosed as having MS, I would suggest that you ask your neurologist if they have considered doing the MOG test. It is a very new area of focus and there does seem to be a reasonably strong presence in paediatric cases.

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I am very happy to read this good news about your son. What a relief for you to have better news after all the worry and fears for the future.

Alison