Yesterday saw Dylan at the hospital under the care of dermatology, a team which I had suggested last year would be useful to see with Dylan’s ongoing eye and skin issues. Finally in the summer that referral was made by an amazing ENT consultant who actually took time to talk to Dylan and I about his ongoing eye problems. Apparently our story of events doesn’t make sense which is why I think we have been fobbed off so much over the years. Although we are sent to hospital each March /April time with Dylan in pain and looking unwell there was no idea why or how. I was dismissed when I said I thought it was linked to hayfever and especially the first cutting of the grass. Dyl has always had allergies but more recently doctors had thought it was shingles but couldn’t explain a link between spring and getting the blisters. Every March / Apr for the past five years Dyl has ended up in hospital with this.
Well now we have a name and a treatment plan. It seems that whereas I get the occasional cold sore Dylan is getting these travelling up to his eyes rather than down to his mouth. The times they thought he had shingles are in fact a much rarer type of Herpes Simplex Infections. Swabs have confirmed this but what is more unusual is that Dylan’s are bilateral and can affect the upper and lower parts of his eyes. There is a real concern that if these go into his eyes they can cause permanent scaring so now we will be having regular eye tests to check the health of his eye starting from next week.
This always flares up in March – May and I have told countless doctors this is when his hayfever is at its worst. Well finally the dermatologist agreed as the hayfever suppresses his immunity which is already low. This means the sunlight is probably triggering the virus to activate. Knowing this means that Dylan will spend six months of the year taking antiviral medication that should stop the infection. We won’t know until next spring if this will work but at least we finally are being proactive. It has taken a long time to get this far which seems crazy and it makes him so poorly when he has an outbreak. I hate getting a coldsore, it makes me grumpy, tired, run down and fed up plus it itches. Imagine for Dylan how bad it gets when he gets clusters of them. Then on top of that he often has to deal with secondary infections like cellulitus which require IV antibiotics.
What with SAT’s and school trip away for a week I really hope this won’t blight yet another summer. For Dylan the health issues often stem from the secondary infections that develop like cellulitus hopefully now it shouldn’t get that bad. The consultant yesterday has said that he will see Dylan if ever we end up on children’s ward with this again.
I am feeling hopeful.