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anyone with a kid with severe/difficult brittle asthma?

(21 Posts)
gussiegrips Fri 11-Oct-13 18:30:36

My 8 year old's asthma is A Problem. He's about to start xolair treatment - he's on the shit-this-is-a-scary-situation end of the asthma spectrum.

Anyone in the same boat?

I've had a Difficult Conversation with a social worker, who was very well meaning, but referred to my son's "special needs" and me being "the carer".

I know that's the reality of the situation, but, ouch. Don't much want to think about it, let alone accept it!

NoHaudinMaWheest Fri 11-Oct-13 22:43:55

I don't really have direct experience of this but didn't want you to go unanswered.
Dd's asthma is very mild but I had much more severe asthma as a child in the days when there was little effective treatment so I do know it can be a truly scary worrying condition and not just 'oh well lots of people have asthma' thing.

Regardless of what the issue is I think we all on here have had that moment when we realise just how permanent and difficult our Dcs situation is and that yes actually we are a 'carer'.

Be kind to yourself - it is a difficult thing to come to terms with.

What support do you have?

Although most of us on this board have dcs with other difficulties, you may find it useful to stick around as some of issues are the same regardless of diagnosis.

gussiegrips Fri 11-Oct-13 23:20:50

Thanks, Haudin. Yep, actually, the thing I'm wobbling all over is that the medics consider me to be a carer. And, why don't we have DLA? And, what support do I have? Ugh.

It's all true, it's all valid, it's all just what it is - ugh.

Thanks, you are quite right.

Hope your DD is ok, it's a, well, ugh. x

NoHaudinMaWheest Sat 12-Oct-13 11:23:08

By support I meant do you have anyone in real life who gets it?

There is a support thread in Childrens' Health on here for parents of children with asthma but I'm not sure how many of them have severe asthma.

You should apply for DLA by the sounds of it but it is a really horrible form to fill in. It is very depressing to have to focus on all the negatives and put them in writing. That is the sort of thing where you may find support on this board helpful as we all get the difficulties of applying for DLA.

And yes it is ugh. Hugs and flowers for you.

gussiegrips Sat 12-Oct-13 17:16:32

No, there's no one who gets it. Not yet.

Well, that's not true, the asthma nurse is outstanding, as is the rest of the team. I've been on the asthmatics thread, and, they are very nice, but our experiences aren't quite the same - and, you know, I don't want to be the Worst Case Scenario...I'll terrify them!

There is a charity for asthma, so I've contacted them. I could do with someone who "gets it" as this is going to be a long term part of our lives - and, certainly, DH isn't going to be able to provide any much support (think headinthesand)

DLA form will be a stoatir. I had a look about 6 months ago, and decided we were fine and I wouldn't bother. It looks like it's designed to make you cry! Happily, the patient support folk at the hospital have, apparently, got someone who has done a few for asthmatics - so, I'll fill it out with them. I'm not looking forward to the inevitable self pity triggers, though, Mitch Allborn said a wee bit every day was ok, and he seemed like a sensible chap.

Because, much as it loathes me to admit it - I am struggling just now, I had no idea how EXPENSIVE having a kid in hospital is! Besides, we need to buy a bunch of stuff for him - obvious things like boxes with lids and anti-allergy bedding, but it all mounts up and my work is constantly shelved because he's on the ward.

I'll sort my wobbles out, it's just all a bit raw just now. I'm a coper, but, sometimes I think that actually doesn't help me - folk let me Get On With It, by which I mean family/medics/school/everyone. I guess I feel a bit isolated this week.

Ugh, ugh, ugh.

NoHaudinMaWheest Sat 12-Oct-13 20:15:45

It is good to have good professionals on board but you do need 'ordinary' bods as well.
My DH doesn't really get our dcs needs either and none of my friends have children with significant additional needs. Which is why I have found this board a godsend as there is always someone who gets the angst even if they don't get the ins and outs of the actually condition.

Little and often is definitely the way to go with the DLA. Good you will get advice from someone with experience.
My Ds was in hospital for 8 months a couple of years ago. It is really expensive.

I have 2 dcs. Ds is 17 has severe obsessive compulsive disorder, Asperger's syndrome and dyslexia to name the main issues. Dd is 13 and apart from her mild asthma (at the opposite end of the spectrum from your ds) she has mobility difficulties of unknown origin which mean she currently uses a wheelchair.

We have a general chat/support thread on this board. It always has Goose and Carrot in the title (the name of our virtually pub/cafe) and someone starts a new one every week. Newcomers are very welcome. Just post and introduce yourself and then just drop in whenever you want to.

If you need advice/ support about more particular issues (DLA, dealing with school or whatever) there can be more traffic for that sort of thing on the main SN Children board.

Love reading stoatir by the way. I'm a Scot exiled in SW England.

gussiegrips Sat 12-Oct-13 21:30:40

Hmm, I'll see you in the goose and carrot, I think.

Thanks so much for the pointers - it's only sensible to take your advice.

Heidnasaun's got undiagnosed Aspergers. But, he scored 36/40 on the AQ test (and, because he's smart he asked me to take the test too. I scored 4. This probably sums up our circumstances!) He is the most remarkable man I've ever met, and I love him, but, helpmaboab, it presents some challenges with the wean!

We'll get there - may need a daud of woad in order to get there, and blue is not flattering at all on me...

See you on the other thread. Thank you so much for answering my wibble. x

NoHaudinMaWheest Sat 12-Oct-13 23:11:08

Aye my man has undiagnosed AS an all. I have at last persuaded him to get himself referred for assessment but it does make dealing wi the bairns much harder.

gussiegrips Sat 12-Oct-13 23:44:16

Ohmaigawsh. <high 5>

I'd be interested in how you find getting a diagnosis - I'm kind of fearful that if we were to get one and they found that he wasn't actually AS...well, then I'm left with the conclusion that he's a bit of a twat.

He is AS though, got the whole faceblindness and whiteboard thing going on. Fiendishly clever, utterly logical, totally reliable and totally unreliable at the same time.

You seen the Cassie threads on OTBT? A bunch of folk with spouses who either are, or might be AS. Certainly, there is a common theme of having important collections of wood/screws/elastic bands...

MN going to run a course in Feb next year with Sarah Hendrickx - "how to not be driven to smothering your aspie in the night". That's not it's actual name, but, you get the gist.

Have a swatch.

giraffesCantGoGuising Sun 13-Oct-13 00:25:06

Hello I am a brittle asthmatic smile What area are you in?

They are coming up with new drugs and trials all the time - I have participated in one and was all set to take part in another but it fell through at last min.

I go to an asthma support group that I heard abouut from my consultant at the "difficult asthma" clinic. People there have had bronchiothermplasty (sp?) pumps and all sorts of different drugs.

Some people were in the situation where their asthma was at risk of killing them then xolair came avaliable and their lives have been transformed. Obviously it isn't suitable for everyone - but my point being that you never know what is round the corner.

What is your ds on just now? Fingers crossed xolair helps smile

Has he always been asthmatic? Sorry don't want to fire questions at you! But am happy to chat. I get a lot of "oh you were in hospital again? was that not just for your asthma though?" errr it is not JUST asthma!

giraffesCantGoGuising Sun 13-Oct-13 00:26:29

Just seen on your profile you are in Edin - our support group is in Glasgow, you are certainly welcome to come or join our fb page. PM me if you like.

gussiegrips Sun 13-Oct-13 08:25:47

Giraffes, that's brilliant.

Yep, he's had a wheeze since he had bronchiolitis and RSV at 8 weeks. But, it runs on DH's side of the family - should have chosen a better sire, really.

At the moment he's on seretide 125, salbutamol am and pm. Monteleukast at night, proton pump inhibitor in the morning (had an ulcer from long term steroids last year) and the inevitable movicol. Usual sliding scale of inhalers, depending on how he's doing. And, at the mo he's on a 3 week reducing dose of steroids, will stay on 10mg daily until review in a month when he has his synactin test and will, hopefully, start xolair.

He's a compliant kid, which makes things easier - he just accepts taking the meds is what he needs to do.

Chronic management is excellent - really, when he's well he's totally well. But, he goes from having a runny nose and being slightly under the weather to having sats of 82% in three hours - and, clinically speaking, there is no actual sign of that because he compensates beautifully. That's why he's had 3 life threatening episodes where I drove him to hospital - didn't realise just how bad it was because he was pink and not gasping.

I'd bite your hand off to come to Glasgow. I'm beginning to feel panic about the winter months and all that's to come. Mind, that's also partly because the reality of how poorly he has been is starting to sink in, I just want to have him running around like a loon and this isn't fair <stamp foot> Daft, because he'll be fine - but, ugh.

giraffesCantGoGuising Sun 13-Oct-13 14:20:30

Have PMed you details.

Does he have atrovent when in hosp? Not sure about childrens meds/doses. I know atrovent helps me when in hosp and I have found it works better for me than ventolin. It is not generally meant to work that well for asthmatics - but it does for me. I have been doing really well since starting on a drug for COPD - I deffo do NOT have COPD! Assume you see a specialist who is willing to think outsde the box like this?

Do you have a pulse oximeter? Obviously not to replace for seeing a Dr but can reassure you/confirm suspicions.

hazeyjane Sun 13-Oct-13 15:00:52

Btw, if you are thinking if getting a finger pulse oximeter, we have this one, it is very good. We got it after realising that ds often doesn't display outward signs of having low sats because he has low muscle tone, so it is more difficult to see the 'pulling in' breathing.

giraffesCantGoGuising Sun 13-Oct-13 19:00:43

That looks good. I have a cheaper one and it is fine for me - although sometimes need to turn it on and off again, but on children it can struggle to pick up.

magso Sun 13-Oct-13 20:48:10

I just wanted to say that being told I should apply for DLA for ds - (which I put off for the best part of a year till he was 9) was the beginning of accepting he has a disability. (Different in that he has learning disability and autism but I am sure the sentiments are similar). I found it quite a kick in the teeth, but DLA does help to pay for the extra expense of the additional needs.
I hope your sons asthma becomes more stable as he grows.

gussiegrips Sun 13-Oct-13 21:26:26

A PULSE OXIMETER! Genius! Why did I not think of that? DH struggles to "see" the problem - but, then wheezybreeks is really subtle - like yours, Hazey.

And, yep, he's on seretide 125, which I think is a version of atrovent, Giraffe? It's an adult dose he's on. Ugh.

Magso - yep, that's exactly how I feel. I want what I thought I had - which was hope that this would just go away. Hey ho.

Today is better - I am counting my blessings:
1. he complies without complaint
2. treatment is free, effective and local
3. DH is trying (ineffectively, but, it's a start) to support him/me/us

And......drumroll, please.... the Maternal Anxiety Diet suits me! I have genuinely never lost my appetite in my life - lost 5lbs! Every cloud.

giraffesCantGoGuising Mon 14-Oct-13 01:20:29

Hola. No don't think seretide is like atrovent - the inhaler that is similar to atrovent is spiriva. Although spiriva isn;t licensed for asthma, only for COPD. Generic name for atrovent is - ipratropium bromide.

It is often used along with ventolin (aka salbutamol) in a nebuliser during an attack.

Mght be worth noting if he gets atrovent when in hosp and how/if he responds to it. I know it works well for me so will always ask for it - and they thank me for that as it works!

What meds does he generally get when he gets admitted/in an attack? Don't want to bombard you with questions btw so only answer all this if you have time/want to!

I am on - seretide 250 x2puffs twice a day, spiriva x1 a day, monteloukast x1 a day, flixotide 250 x2puffs twice a day, ventolin when needed, saline, ventolin and atrovent nebules when needed (have a home nebuliser) and antihistamines.

The seretide and the flixotide have a cross over of ingredients and both high doses so 1000 of each. This is equivalent of being on a low dose of oral pred every day and is trying to prevent the regular high doses of pred.

giraffesCantGoGuising Mon 14-Oct-13 01:28:15
NoHaudinMaWheest Mon 14-Oct-13 11:03:26

Gussie to go back to the spouses with AS.
Thanks I might have a keek at that thread. You could have been describing my DH and yes this weekend smothering him seemed like a good idea.
I am not expecting a diagnosis any time soon. The adult ASD service has only been running a year here and they are inundated so I expect a long wait for an appointment.

gussiegrips Tue 15-Oct-13 01:26:28

they are inundated

Yep.

It could be argued that high functioning autistic tendancies are remarkably similar to the symptoms of, you know, being a man...

Things here better. Prednisalone doing it's job. Huzzah.

Giraffes - he gets a MDT/nebuliser. Then another and another. And, a pred. Then we try to get to the magical 4 hours, fail, and get admitted.

He's needed magnesium on a handful of occaisions, but never adrenaline or anything proper scary.

His sats are deceptive. I am unable to tell whether he's sitting at 100% or 93% or helpmaboab. He's an artful compensator. And, therein lies the rub.

I don't actually know what's in the neb. I've always assumed it's salbutamol as they've referred to it as being equivalent to an MDT. I shall ask the asthma nurse, thank you for the top tips.

he's on seretide 125 x2/day, monteleukast, piriton and salbutalmol prn. He's now on 10mg pred a day until review, that comes with fast-tab (proton pump inhibitor) as he had an ulcer last year because of the 6 months of on/off pred. Finished the antibiotic today.

He's good as gold at taking the meds, even the bogging pred (why oh why oh why can't they make that stuff taste nicer?)

He's picking up, but remains pale and wheezy at night.

I'm getting new mattresses/allergy bedding. Bang goes the Christmas money, but, it'd be worth it for some sleep! I've got some work coming up, so Christmas is manageable, but, this is the wrong time of year to be spending £300 on pillows. Pillows. How boring.

Anyhoo, his sister has just started to wheeze tonight. Deep, deep joy! (she's not as bad, a few puffs of the ventolin until she gets over her cold should do the trick)

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