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Chest Infection Triggering Asthma & Not Clearing - DD also has EDS - Advice Ideas Please ??

8 replies

Rockinhippy · 02/12/2013 10:15

Hi, I'm hoping some of you have some ideas on how I can help DD with this & whether I need to be taking her to A&E rather than the GP again as this is getting beyond a joke now :(

DD took ill a week ago last Thursday/Friday, so 11/12 days ago - she started off more under the weather with what seemed like a cold type bug, by Monday she was feeling pretty rough, but still wanted to go to school, though she didn't cope we'll, not helped by her teacher pushing her to write more when her hands were painful & according to DD getting cross with her that her writing was untidy.

I kept her home Tuesday as she seemed worse & was very down, GP diagnosed a chest infection, said her lungs sounded very crackly & gave her antibiotics & what chemist said was a very high dose of prednisnolone & GP told us to use her blue asthma inhaler up to 6 times an hour.

DD had asthma after a hospital stay with pneumonia at 5yrs old, she's now 11 & after realising the brown preventative inhaler was making her Ehlers Danlos related IBS symptoms much worse, we took her off it & had her monitored by the asthma nurse, she coped fine, her lung function, peak flow etc has been great & over the last 2 years she has only once needed to use her blue inhaler during P.E. at school.

She has had a really bad run of bad health lately, 2 nasty stomach bugs in this last month, on top of generally struggling with EDS symptoms. She recently saw the GP because of the stomach bugs (feel I need to get her seen as under pressure to keep her in school) this was before this chest infection kicked in & they checked her lungs & were impressed that her peak flow etc was really really good without any inhalers for a very long time, so effectively the asthma had cleared up.

Chest infection no better after steroids have finished & she was needing asthma inhaler more than 6 times an hour, but we weren't told by that GP that meant she needed to be seen at the hospital -

second different GP we saw gave her another 3 days of steroids & explained if she needs inhaler more than 6 times in an hour, get her to hospital - wish I'd know that earlier Hmm - DD was so shaky with the very short walk back from our GP that she almost collapsed, so unlike her as she copes like a trooper with everything - thankfully DD was needing to use her inhaler less, but still 5/6 times an hour, generally looks awful, pale, dark holes for eyes ec - sitting next to her you can her her poor little heart thumping away as she's so breathless :(

She's now finished second lot of steroids - so 6 days of 30mg a day & only today's worth of antibiotics left - she was whimpering & crying in her sleep when I went in to check on her this morning & has again been needing to use her inhaler even through the night, waking breathless :(

We did manage to walk to a very local pub for Sunday roast yesterday, as I hoped her getting out & a bit if fresh air & normality might help - she coped better than she did with the last GP run & ate well too, but was clearly wiped out, still using her inhaler frequently & we had to come home as soon as we had eaten.

Have GP appointment with yet another GP again in a couple of hours
I'm aware that because we nearly lost her to pneumonia I'm probably prone to being over anxious over this, but though she has improved slightly, she's still a long way from being better & I am worried I'm just wasting more time with GP & they vary so much at our surgery too - the 2nd one we saw is a really good, thorough one, different one today I'm not so sure about.

She's up now & still looks awful, still using her inhaler frequently & still no where near well enough for school, don't think she'd be able to have her inhalers to hand even if she were better - she's usually so stoic, copes so well with injury & illness, but she's even took it upon herself to cancel a first time meet up with friends to go to the cinema alone on Saturday, she was so excited about going, but knew she just couldn't cope.

Anyway, I'm waffling, she's still really struggling & I'm worried

Any ideas or experience with this

TIA

OP posts:
Sirzy · 02/12/2013 10:37

can she not use a different preventer inahler? I know nothing about EDS but DS (4) uses seretide as the brown inhaler was useless.

I don't think for an 11 year old that is a particularly high dose of pred by the way - DS has just finished a course of 30mg a day and he is only a small just turned 4 year old.

I would be tempted to go to A and E as at least they should do a chest xray

Rockinhippy · 02/12/2013 10:47

Thanks sirzy she hasn't actually needed the brown inhaler for a couple of years now & both GPs said it wouldn't help her to take it now, will ask again today though

good to know that's not such a high dose of steroid - it was our chemist that queried it, so I took her word for it as been very high.

DD is now complaining at the idea of going to A&E, it's further away & usually a long wait & though she's definitely brighter than she was, she's still in a state, though I think I would feel more confident having her seen by paediatric specialists - not sure if that's because I'm a bit paranoid as 5 GPs missed pneumonia & treat me like an over anxious idiot when she had pneumonia, same with a similar problem when she was tiny or whether my instincts are telling me its more Confused

Appointment is soon, so think I will take her round there & see how it goes, if I'm not happy after that, will take her to kids A&E anyway

Thanks, that helped :)

OP posts:
mummyto2boysandagirl3 · 02/12/2013 10:52

I think it sounds like she needs a preventer (but I'm only going on my experience with my own and my ds asthma) I have no experience in ur dds other condition but I do know there r lots of preventers avaliable so maybe they could try her on something other than clenil? don't worry too much about the shakes/increased heart rate ventolin does if u take a lot of it. Tho As a parent it's not nice watching ur child like that and as an adult that feeling can b quite scary it happened to me at Easter. If u r not happy with the gp then take her to the hospital follow ur instinct and hope ur dd feels better soon

Rockinhippy · 02/12/2013 12:50

Thanks both of you - GP didn't think brown inhaler would help at the ,moment - now just on our way to the hospital now as the GP we've just seen thinks she needs a chest X-ray - fingers crossed its nothing as she's now panicking about them keeping her in :( -

I've had to sneakily pack a hospital bag without her seeing it just in case they do keep her in, though hoping its just to rule out anything worse & they can hopefully help with better treatment

Wish us luck

OP posts:
Rockinhippy · 02/12/2013 12:51

PS, not sure EDS is connected at all, though I am reading recently something about mast cells & it affecting immunity, so that bit might be relevant, the rest won't be

Thanks

OP posts:
IShallWearMidnight · 02/12/2013 13:01

only an anecdotal connection between asthma and EDS - my DM has pretty bad asthma, and potentially also EDS (DD2s consultant tracked her family history of hypermobility back through me, and DM fits the profile almost exactly). Her asthma clinic is always amazed at her impressive peak flow readings which don't look at all like asthma, and they've come to the conclusion that her lungs are especially stretchy, and so the peak flow needs to be disregarded in her case, and they just go by her reported symptoms. Sounds plausible, but I haven't been able to find any medical references to it as a link.

Hope you get something sorted Rockin, it's hard to know when conditions are linked, especially ones which have "weird" unrelated symptoms - DD2 has POTS and EDS, and we can't always work out what symptom is due to what condition, or if it's just her being a bolshy teen Wink.

mummyto2boysandagirl3 · 02/12/2013 13:11

Hopefully ur dd will b home in time for tea she's going to the right place they'll get to the bottom of it and get her feeling well again x

Rockinhippy · 04/12/2013 10:00

Thank you all - really sorry I thought I had replied to this, app kept crashing, so took a couple of goes & didn't work Blush

Thankfully she was home by tea time, or there abouts, but the hospital was a bit of a farce to be honest, upset DD a lot & me tooAngry

Im thinking of complaining about the stuck up young doctor we saw as she had no respect for DD at all. She was far too busy showing off to & flirting with the handsome young student assigned to her & missed completely that we were sent there by our very experienced GP, insisted DDs lungs sounded clear, even though the triage nurse & student thought otherwise & refused DD a preventative inhaler, treat me like I was over anxious mumHmm telling me it must be hard to relax & not be anxious after nearly losing DD to pneumonia Angry

I only mentioned the pneumonia by way of pushing home the fact that both DD & I have a naturally low temperature & it doesn't always show as very high even with an infection, it didn't when she had pneumonia, which was in DDs notes sent by GP Hmm,

She also went on to tell DD that she doesn't have EDS, but joint Hypermobility ( they are the same thing) & that there's nothing wrong with her other than been a bit bendy - oh how I wish Angry add to that the veryvextensive poking, prodding & speaking to us both like we were 3 yr olds & completely totally missing point that DD is a naturally easily embarrassed 11yr old girl who doesn't like her top just ripped up to listen to her chest or prod her ribs - yet again - she poked her so hard that she hurt DD, who because the EDS feels pain more Angry

She then contradicted 3 much older & VERY experienced GPs, saying DD had nothing more than a mild virus & should be at school, quizzing her about bullying etc, telling me she was just anxious Angry -

That was the point I told the silly girl that she was obviously still young & had a lot to learn & I would be trusting the expertise over 3 much more experienced GPs as she was proving herself to be lacking in a lot of basic knowledgeHmm the student could barely contain his giggleGrin

DD was very upset & angry leaving A&E, so I encouraged her to walk the half mile home, the air was very icy & I know from past that very cold air is good for opening up the chest & airways, I had my 4 wheel trolley with me, so she had that as support, she was still shaky, but now angry too, so that actually helped push her to make the walk.

I rang our GP on the way & was told to take her straight back to the surgery, GP checked her lungs again & was still concerned, but said there was quite a bit of improvement from earlier, she agreed trying the brown inhaler was a good idea & thankfully that DID make a difference :) as DD for the first time in over a week had managed more than an hour or so if very broken sleep.

DD insisted on going back to school yesterday :) & though still using her inhaler a lot, she coped as they allowed to keep it with her & let her go to a quiet area if it all got too much, I brought her home to rest for lunch too - all thanks to the brown inhaler - thanks for that advice :)

She still not out of the woods, but after some reasonable sleep, a big improvement, though she's just finished her antibiotics last night, so hopefully it's asthma causing the problem now & not the left over from the infection, so it won't flare up again, fingers crossed - poor mite is wiped out & her IBS now playing up due to inhaler, but she's a real trooper & coping with that & was missing school so very happy to go regardless :)

Thanks IShall that's very interesting & does make a lot of sense re stretchy lungs, though DD has the Hypermobility type diagnoses, so not officially stretchy skin, not where they test at least, but we realise now she does have it in other areas, but not massively so.

I'm on my way to having my M.E & Fibromyalgia & a list of other linked conditions diagnosis changed, unofficially diagnosed by the spine clinic, GP & my kidney specialist, who is concerned that its not hypermobile type, so I have been referred to Professor Grahames clinic at UCLH - my DM was also very much showing signs of it, but like me had other diagnosis including M.S. so everything was hung on that, she died recently & I spent weeks by her bedside pushing the doctors for more answers as I could see the problems she was having with pain meds & I.V. & more were possibly linked, they were great & organised blood test & she was diagnosed genetically -

though sadly despite getting answers & other diagnosed with other things that could be helped at last & getting better, we suddenly lost her to a hospital acquired pneumonia, so it all went a bit pear shaped & I didn't get the actual exact type diagnosis, but this answers a big family mystery of ill health & older onset disability going back a lot of generations :(

Unfortunately we now also know that DH fits the profile for Marfans type EDS & he does have very stretchy skin, though thankfully not symptomatic,

so poor DD is probably getting it from both sides & dies suffer with POTS & autonomic nervous system symptoms too & definitely getting worse as the hormones are kicking in :( - though can definitely relate to you last comment Grin

Thanks again everyone :)

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