Hi, i'm not on here and not sure I'm posting in the right place?
My son Jake, who is nearly 15 has has a letter about his attendance and the school want to review it with me weekly from September (I am really annoyed by this as I am the new safeguarding school nurse for his school!)
As a baby Jake reacted to Heat/cold and massively to emotional stress and virus, with a few food triggers as well and was ill all the time, however he has really improved as he has got older and loves football which I never would have dreamed he could play with his triggers!
Jake has been coping really well and his only real problems now are with the cold and if he gets a virus, he seems to be ill before and after the virus with Masto symptoms and he describes how it feels like it takes him a long while to feel "normal" again.
Jake has had a few lots of tonsillitis and has been off for 4 period of illness. The latest one I sent him back to school ill and he dragged himself through the last week.
Anyone have any information I can forward to the school, the information I have is quite old and I just wonder if there is some current information for the school? We haven't seen his current consultant for over a year, I expect due to covid and because generally he is much much better. I've not shared a lot of information with the school as Jake started high school in year 9 (September last year) and really didn't want me to make a big thing as he wanted to be like his friends, but they do have his health plan saying his triggers.
He is also having an operation soon as he has an absent testicle and the hospital put it off for ages due to how emotional he got about it and then how ill it made him.
Sorry for such a long post!
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Howlatthemoon
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Hi Howl, I'm sorry to hear your son is having symptoms that are causing him to miss school. We have some information on our website about triggers and self-care that could be a help on our website (as well as our anaesthesia guidelines, which you would want to give to the surgeon and anaesthetist well before the surgery so they can make a plan together about the best approach for the surgery and for pain management afterward. Sometimes they don't think ahead of the pain management, but since some react to opiates it might be good to think with them about that soon. During surgery it can also be good to be thinking about temperature management as well give that it's a trigger for Jake, and to let them know about that in advance.) I can also share some more medically oriented articles for the school that could be a help as well. We are in the process of rewriting our information for schools right now but it isn't ready yet! My email is jess@ukmasto.org. Best wishes.
Just joined the support group as it’s looking like our 11 year old daughter could have a mast cell disorder (even if not proved the symptoms are a close match so the website and forum are already useful). Who would have thought ‘mast cell rage’ would be a thing we recognise or even issues with hot / cold temperatures.
She is still generally much better than she was 2 years ago, thanks to high dose antihistamines and nasal sprays, but things have moved on and the consultant wants to try and make things even better (reduce further the intensity of any outbreaks in the skin, stomach/bowel, emotional side etc and look at the impact of viruses).
Anyway, I was very interested in your post and especially the link between mast cell disorders and reacting really badly to a virus. Our daughter has always been terrible with viruses (for as long as we remember). Covid took her 8 weeks to recover but others have lasted 6 weeks as well. We were always told by medical professionals that ‘it was just one of those things’, but the consultant last week completely disagreed with this view and talked about the vicious circle between the mast cells and the virus. He has prescribed extra medication to take at the onset of a virus to try and calm the (inflamed) mast cells in that situation.
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