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Fluffy Potatoes

Dust mites and Immunotherapy

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Fluffy Potatoes

Thought I’d start this thread rather than continue to crash the cold one ☺️

 

@Annodam how does your ds go with the immunotherapy? How old is he?

 

The only thing holding us back is that Ds1 hates needles and I would need to physically restrain him until he gets used to it, which I’m sure he would eventually. He is 7. This kind of messes with my ideas around body autonomy, but realistically I know it’s something that needs to happen. We throw so much medication at this kid it would be nice to eliminate some of them.

 

For others that have done it, is it worth it?

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caitiri

I just posted on the cold thread. We’ve just started looking at allergies. DS is usually sick with viral cold s and stuff for most of the year, isolation has finally shown us there is an underlying issue. I’m really interested to know peoples experiences as well

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robhat

I had immunotherapy for my own dust allergies many years back. It helped a bit, but not a lot and any benefits seemed to disappear after I had kids (probably not something you have to worry about with your son!)

 

The best thing that has every worked for my dust allergy is a nasal spray called Dymista. It's practically a miracle. One spray up each nostril every night and I have no more allergies. Only downside is that it seems I can't miss a dose. If I skip one night, bad allergies the next day! Otherwise it's great. It is prescription and I think might only be for adults. It was new when my doctor first offered for me to try it though a few years back so there's a chance there might be a version for kids now.

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Kiwi Bicycle
Posted (edited)

DH did this when he was at university, but it was after a particularly bad allergic reaction that ended him up in A&E. Testing showed it was dust mites. He did weekly injections for 3 months.

We do try and minimise dust and use wool duvets ( no feathers) but don't do mattress covers etc. He uses Nasanex occassionally but the CPAP machine has worked the best, totally HEPA filtered air. He hasn't had an allergic reaction ( apart from when his whole family ate some fish that was slightly toxic) that required an emergency room visit since. However nasal congestion and an asthmatic cough/ throat tickle still happens daily, but much less with his CPAP.

 

Edited to add, maybe look into gettkng the Dyson air filter for your son's bedroom as a way to reduce medication use?

Edited by Kiwi Bicycle
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Fluffy Potatoes

That’s interesting, I was wondering if it lasted long term.

Ds currently takes Avamys (was using nasonex) and uses moisturising eye drops and while this works to relieve the symptoms he still has the allergy shiners. His sleep is much improved though since starting the Avamys, he’s averaging 10-11hrs and is waking up happy.

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amdirel

DS finished his immunotherapy a few months ago, for dust mite. It has worked for him but it's not the miracle cure I was hoping for... he still gets mild symptoms, but he no longer has to take daily his nasal sprays and rinses, antihistamines, and singulair. So he's basically medication free, which is amazing, but not 100% symptom free. He just has a zyrtec when it gets bad, which is maybe once every few weeks. However he's also allergic to cats and has occasional cat contact, so maybe it's the cat that's the problem rather than dust mite now.

 

He used SLIT (oral drops), not injectables. So, no needles, but he had to have the drops every day.

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annodam

It's my daughter, she'll be 19 in July.

We didn't discover her allergies until she nearly died though which prompted us to move quickly.

 

It is very expensive, stock gets ordered & comes from Spain every 6wks.

Think $400.00 ball park figure.

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22Fruitmincepies

I’d like to do this for DD in a few years. Her immunologist has said for her age (5 turning6) treatment would be 2mL of liquid she would need to hold under her tongue for 1 minute (maybe?) each morning. Currently she wouldn’t be able to do this. Dust mite allergies really suck.

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robhat

DS finished his immunotherapy a few months ago, for dust mite. It has worked for him but it's not the miracle cure I was hoping for... he still gets mild symptoms, but he no longer has to take daily his nasal sprays and rinses, antihistamines, and singulair. So he's basically medication free, which is amazing, but not 100% symptom free. He just has a zyrtec when it gets bad, which is maybe once every few weeks. However he's also allergic to cats and has occasional cat contact, so maybe it's the cat that's the problem rather than dust mite now.

 

He used SLIT (oral drops), not injectables. So, no needles, but he had to have the drops every day.

 

I have allergy to cats too, and some grasses (not pollen) so it can be hard to tell what's causing my symptoms. I have found though that I really have to stay away from cats. Instant reaction if I handle them or stay in a place where they have been rolling around etc. I can be in the same room with them at my feet, just as long as I don't touch them.

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Fluffy Potatoes

Edited to add, maybe look into gettkng the Dyson air filter for your son's bedroom as a way to reduce medication use?

Thanks for sharing his experience, that sounds scary. A Dyson filter is definitely on the list, just need to save up for one ☺️

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Fluffy Potatoes

DS finished his immunotherapy a few months ago, for dust mite. It has worked for him but it's not the miracle cure I was hoping for... he still gets mild symptoms, but he no longer has to take daily his nasal sprays and rinses, antihistamines, and singulair. So he's basically medication free, which is amazing, but not 100% symptom free. He just has a zyrtec when it gets bad, which is maybe once every few weeks. However he's also allergic to cats and has occasional cat contact, so maybe it's the cat that's the problem rather than dust mite now.

 

He used SLIT (oral drops), not injectables. So, no needles, but he had to have the drops every day.

 

Ds had an allergic reaction to Singulair

 

For some reason the immunologist doesn’t want to go the drops route, she doesn’t think it will be as effective for ds? He also has allergies to about 4 different grasses and a variety of moulds and I think she wanted to include at least one of those. I’m not sure, I know nothing about the science behind it all. But for a 3 year investment I want it to work!

 

I’d like to do this for DD in a few years. Her immunologist has said for her age (5 turning6) treatment would be 2mL of liquid she would need to hold under her tongue for 1 minute (maybe?) each morning. Currently she wouldn’t be able to do this. Dust mite allergies really suck.

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Fluffy Potatoes

It's my daughter, she'll be 19 in July.

We didn't discover her allergies until she nearly died though which prompted us to move quickly.

 

It is very expensive, stock gets ordered & comes from Spain every 6wks.

Think $400.00 ball park figure.

 

Sorry for the mixup ☺️

 

We were quoted $250/5 doses, with the first 5 weekly, then monthly for the remainder. No small commitment but one we would make happen if it’s going to work.

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annodam

^ Cool no worries!

 

Did they specify how long treatment will be for, DDs is 3yrs, we started in March 2019.

 

Also, DDs is a grass allergy, allergic to 20 different grass types, so given she plays a lot of sport outdoors, we needed to get it sorted ASAP.

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Fluffy Potatoes

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annodam

Nah, no issues at all.

She reckons she doesn't feel it.

 

They just put a sample (a tiny drop on her arm & numbered them 1-25) & within like 15secs her arm came up in welts.

The samples needed to stay on for 5mins but by 3mins she was almost in tears from the agony, her arm was itching & painful like heavy.

I reckon anywhere else & she would've burst into tears but given we were at the doctors waiting room at the time & there were other patients there, she held it together...

 

The doctor did take a photo & decided to keep it as a promo poster in his office because he had never seen so many welts come up so quickly, they were 20¢ in size...

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Mrs Twit

My DS had a bad dust mite allergy among some other milder ones. He had issues with Nasonex - weird sort of tics and seizures that may have been unrelated but started when he started using it, and stopped when he stopped using it...

 

He used the immunotherapy drops for dust mites every morning for 2 years and finished about 6 months ago. It started working within the first couple of months. It has been life changing for him. As with Amdirel's DS it hasn't completely gone away, but he no longer uses any medication and his allergies no longer affect him. We still use the Allergend dust mite mattress, doonah covers and

he often wakes up a bit blocked in the morning but that clears during the day.

 

Yes it cost a fair bit over the 2 years, and he had to be fairly dedicated to put the drops under his tongue every morning before he ate breakfast. I tried to talk him into the injections but he was too scared (probably was about 9 or 10 when he started). In hindsight now at 12, he said he would have the injections instead. Can not recommend it more. We are hoping it doesn't wear off.

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ytt

My ds is nearly 21 and had them as a teenager. lol I have a terrible memory so I would have to look at paperwork or old posts.

 

DS allergies got really bad starting high school (had them for all his life though). As a baby when we were seeking answers for whole body hives and terrible allergy symptoms etc he had a RAST test (from memory) that the doctor said was very elevated, he even had to be tested for cystic fibrosis which obviously negative. This was nearly 20 years ago so things have changed.

 

After missing high school because his eczema was so bad and eyes would swell shut we finally got him tested. He quickly got into the state system due to symptoms.

 

He had the arm prick test which was not comfortable waiting for the results. From memory he had reactions to pollens, grasses and moulds. Can't remember if there were dust mites.

 

We quickly started the injections which were weekly then monthly which had to be done at the hospital clinic (fair drive for us) and building up to the maintenance dose. After being stable and showing no reactions we could continue at our GP office on the maintenance dose.

 

We saw a drastic improvement straight away, until he went into anaphylaxis after one needle. DS had to go straight back to the hospital clinic and start from scratch, small dose weekly increasing dose, then maintenance dose. DH had to carry an epipen on the day of his needle.

 

As it turned out the company making the mix suddenly stopped supplying and they had to source from a different overseas company. By the time they could get DS mix right DS had been off the medication for long enough that we had to start all over again. DS decided to discontinue, we had been doing it for nearly 4 or 5 years (I think we were close to the end). Plus DS was getting into the heavy years of high school and he would have to take a morning off each week then month until he could go back to the GP office where he would catch the bus from school and I'd pick him up after work.

 

Sorry long story.

 

In a nutshell it was the best thing we did. DS allergies have got so much better and he no longer gets painful eczema. He still gets stuffy but after reading about air purifiers I think if we got him one he would have no more sniffles.

 

DS I think got 4 or 8 different allergies covered. They chose the ones he was allergic to most. He then had two needles, one on each arm. So if you have to pin down for needles I don't think it would work. DS has never had issues with needles.

 

Our specialist didn't want to go the oral drops route as they said that due to number and severity it wouldn't be as effective as the needles. But from memory they gave us the option as it was cheaper.

 

Yes it's expensive, when the specialist told DS the price he said no. They make the child decide and not the parent as ultimately they have to make the long term decision to do it because if you stop after a year or two you won't get the full effect.

 

If DS were to have allergies flare up again I doubt he would do it again, he'd put up with the symptoms. At the moment he has a terrible skin condition that even the dermatologist couldn't work out. Cream is keeping it at bay slightly. The dermatologist told him to stop using the cream during uni break and come back and get biopsy... He didn't bother, he is just wearing long sleeve and using creams.

 

Researching celiac disease (DD is suspected) the rash symptom looks exactly like DS rash. DS got a blood test to check levels but he hasn't even bothered to get the test done. DD has just finished her 6 week gluten free diet with blood tests so we will see what the next step is (couldn't get biopsy because of COVID ).

 

Well that turned into an essay, any questions let me know. I know when DS was starting it there wasn't much on the net about it.

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Grrrumbles

We are doing it for DS (9) now. Have just finished the weekly needles and about to go to monthly at the GP’s.

 

His prick test showed Grasses, Dust and Cats. He is having treatment for grasses and dust as we are a dog family.

 

He is happy to use asthma puffers and tablets but hates nasal sprays so was hard to get him to use regularly.

 

The prick test was uncomfortable but he was fine once the doctor put the antihistamine cream on after she had measured the reactions.

 

It is expensive but so are antihistamines. I don’t think he was severe enough to get in quickly to public so we were okay with going private and we managed to get some of the appointments in during isolation when the schools were shut.

 

We suspected grasses as his symptoms ramped up when he changed schools to one surrounded by poorly maintained ovals and grassed areas. His likely high school is on the other side of that open area so he was going to be in the same spot everyday for 8 years.

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