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Anyone with children with severe allergy?(21 Posts)
I know it's not really a education topic, but children's health section seems very slow. Hopefully can get some response here.
My ds will be starting sublingual immunotherapy very soon. It's a lot of commitment. 3/4 monthly hospital visit(2 hours one way, so practically may need to take whole day off school) to review/check ups. Taking tablets(potentially harmful) everyday for at least 3 years.
Has anyone gone/going through this treatment? Would like to hear any experience. TIA.
No sorry, what is the allergy to? My niece is severely allergic to eggs and cashes. If some eats eggs and gives her a kiss she gets hives. Or if someone eats eggs or cashews and their saliva touches her skin, she gets hives (this happened when another baby ate the food and then got his saliva on her). They just keep epi pen all the time and monitor her. If she gets hives, they give her antihistamine. I know one other child with same cashew allergy who do the same thing. I never heard of this sublingual immunotherapy. Can I ask more detail about the allergy? Why the immunotherapy?
DS has been suffering from multiple food allergies since he was a baby, and environmental(dust/pollen/animal) allergies since he was a toddler. And we carry epipen.
This therapy is for controlling environmental side of allergy which isn't fatal, but difficult to avoid, and ds suffers all year round. Food allergies are totally under control by restricted diet.
We have been seeing an allergy specialist dr at London hospital for years, and she suggested this option.
Yes, we've done this and about to start again on another allergen. DS9, is allergic to nuts, sesame and has various environmental allergies too - wide-ranging hayfever, dustmite, cats, dogs and horses.
He has been seeing Gideon Lack since he was three. In that time, he's been de-sensitised to eggs, which has been a big improvement. He is still allergic, but as long as he regularly eats eggs, he will be able to tolerate them. We are doing the same with pine nuts and coconut.
Four years ago, he started the three year treatment you mention. He had it for hayfevers and tree pollens. It was quite tough at the beginning, so he took it at night. It was tough as it made him tired and he took a while to get used to the idea. My DH also had the treatment. It's been a real success - he was re-tested this week and his reactions were down from an 8 to 2. (Not sure what scale this is measured on, but we all thought it sounded good). He hasn't had one day off school due to hayfever and hasn't had a bad reaction in the last two summers. I think it's great and I had a similar treatment when I was a teen - in those days it was a weekly injection.
We're about to start again, this time with horse and hopefully dust-mite too. It is a long time commitment, but it's a small effort each day and once you get used to it, no different than popping a vitamin or brushing your teeth. We are self paying - it's very expensive, but we think worth it, esp as DS has so many different allergies.
What's your main concern? Is there anything I can help with / info etc?
Ruggles, thank you, it's really reassuring. He will be treated for dust-mite this time. My ds's score for dust mite is off the scale, and really having difficult time with added cat/dog/pollen allergy. His skin is always sore with severe eczema. Sometimes he reacts to the old books and go into coughing fit. If he need to sit on the dirty floor at school, his entire bottom and legs sometimes end up covered in flared up eczema. So this may change his life for better.
My main concern was that I had no knowledge of this before, that taking what is harmful to you regularly would improve immunity. Also he has other health issues so commitment to take more days off school was a bit of concern.
But your post made me feel positive. Reaction down to 8 to 2 sounds promising.
I knew we had no choice but to take the offer for his sake. Just wanted to hear a positive story. So, thank you. You have been a great help.
irvine, I think it is exactly because it is such a big commitment that it is not widely known. It only really makes sense from a personal perspective (and is only cost-effective from a public health perspective) in cases of severe allergies and/or where there are other factors in play, leaving the person affected unable to lead a normal life basically.
So to most dust/pollen allergy sufferers, this will never be suggested, and if it was, the sufferer would quite likely decline.
It was offered to me once, for my hayfever (in a different health system, where treatments are much less restricted by cost considerations) but after consideration and discussion I declined, though with the option of changing my mind if my hayfever should get worse.
Now in England, my hayfever is not 'bad enough' for it, and sometimes I wish I had done it then - short term pain, for not much gained (my hayfever really isn't very bad) - but cumulatively... I wouldn't be suffering every single spring...
FWIW I believe (if this is similar to what I was offered) a lot of the time you are committing, is spent 'waiting' and being observed. They can't let you (your DS) go until they are certain that there will be no reaction. So your DS will be able to use that time to read or do homework or whatever sedentary activity he chooses. And think of the long term gains!
Brillotoic I have very bad tree pollen hay fever- mainly birch but allergic to a number of tree pollens. Is this treatment available in the U.K. (private or NHS)?
Sorry to go slightly off topic here but can I ask what symptoms anyone or anyone’s child has had with food allergies? I have a nearly 4 year old who had 18 months was found to have an allergy/intolerance to strawberries. He had only had a small yogurt but he had severe stomach pain and sickness and a fever. We took him to A&E because we were worried about appendicitis and he was kept in for dehydration. I have been advised to try gradually reintroducing them to his diet but to be honest I’m still too nervous. This treatment has been mentioned as an option if it were to continue and/or worsen as he gets older.
Thank you, brilliotic. If it works, it will definitely make my ds's life so much easier. So, we should go on ahead with it. If it doesn't work, really nothing to lose.
Daffodils, ds was offered this under NHS.
Millie, my ds's reaction to food varies, some very severe instant reaction to others delayed reactions. Instant reaction varies from anaphylaxis, severe vomiting resulting in explosive diarrhea, rash. Delayed ones are hives and rash few hours/days later. Never had fever though.
At ds's hospital, they are able to test 120+ allergens from a single blood test. Maybe worth asking for the blood/prick test, etc at your hospital/GP to refer.
Sorry, I tried to copy/paste millie's name and copied entire thread!
@irvine really, I didn’t know that? I will definitely ask about the blood test, thank you so much for that! He has never had a similar experience with any other foods and it scared me so much that I’ve avoided strawberries like the plague ever since.
And I did wonder what the huge long thread was about 😂
Are you aware of Allergy UK www.allergyuk.org
They have a helpline which can provide and can and signpost to local resources.
Thank you MNHQ for editing my silly mistake!
Thank you @Reythelastjedi I wasn’t aware of that website but I’ll have a look.
A friend's son had that for hayfever and it made a big difference. Hayfever being seasonal can have a huge impact on exams so they decided it was worth the time and effort. Hope it works for your ds. I would also make the school aware that he shouldn't sit bare legged on the floor - it is a reasonable adjustment to sit him on a chair. Hopefully in a few years he will be able to roll around happily on it!
Thank you, shouldwestay Really nice to hear someone with positive results.
About sitting on the floor, school is generally very good. But sometimes it happens with less aware teacher/ta taking over etc.
It does make huge difference for ds's QOL if the therapy works, so fingers crossed.
Just an update. We have started immunotherapy for my ds. It was just horrible and tedious. It is a great commitment, have to have proper routine everyday, the child need to co-operate, need to be monitored, and at the moment, my ds is having a quite bad reaction. But just hoping it will work, and he can have more normal life as a child, and teenager, and as an adult, when it's over. I think it's really hard work. And really hope it become some sort of easy routine soon. Meds are for 12+, and my ds was offered at age 10, but I can see why. It's really hard not to mess it up, especially the reactions are worse. They recommended injections for younger children, though they said the results are better with what my ds's getting.
People who wanted to know if it can be done under NHS, they said the meds cannot be dispensed by GP. So we need to get supply directly from the hospital. Maybe that's why it's not available so freely, also they did have a check list for severity of symptoms, they said they only do it for really severe case under NHS at our hospital. (They had a check list, and they had to score 20+ points to be offered, at my ds's hospital.)
@irvineoneohone - really sorry to hear you are having a tough time of it - hope things improve and that your DS isn't put off the whole thing. xxx
My DS has severe allergi s to milk, egg, nuts and sesame. I’m hoping at some point he will be able to have some desensitising treatment so I’m interested in hearing how you get on.
It’s horrible seeing your child miserable after a reaction. I hope he’s feeling better soon.
Thank you Ruggles and trixymalixy.
It's early days, but I am quite hopeful. They said it's actually good to have some reaction at first. So, fingers crossed that he gets better with
Short update for anyone interested. Had quite bad reaction for while(full blown hayfever like symptoms and aggrovated exzema even with taking antihistamines), but now after 2+ weeks, it started to settle down.(Though he is still on antihistamines everyday, so may get worse if he is off.) At least constant sneezing, coughing heavily and bloodshot eyes are gone, and eczema seems to be drier.
Taking medicine become kind of routine, as reactions settled.(First it was quite horrible since holding something in your mouth for a minute which makes you tingle horribly and want scratch your face off!)
Now I am quite hopeful that it might work, and in the long run(of 3 years), he will have quite normal life without suffering all year round.One of the scariest thing that happened to him was he went into severe allergic reaction by reading old book from school. At least that won't happen if it works.
If it does work, his quality of life will be transformed massively. So I will keep updating.