Fed up with DD's health - Long, sorry.

[Galena]

DD was born at 27 weeks, weighing 1lb 15oz. She was in SCBU for 9 weeks. She's now 13 months and doing really well - been discharged by consultant, physio, audiology and optometry departments. However, since about November she has had pretty constant colds. This has resulted in 2 3-night readmissions into hospital with bronchiolitis requiring oxygen, one with a short stay in the HDU.

For the past 5 weeks she has had a constant runny nose and cough. No days where she's been ok. CONSTANT. We've been backwards and forwards to the GP every 10 days or so and been told 'it's a virus'. Yesterday her temp was 39 and wouldn't come down with nurofen/calpol and she was working hard to breathe. I went back to the GP who sent us to the children's ward.

They spent 5 hours trying to get her temp down and finally it did and she perked up. The consultant spoke to us and basically called me a liar that she'd had these symptoms for 5 weeks without a break. He told me maybe the cough was 5 weeks but not the runny nose. I told him it definitely was 5 weeks without a break which is why I kept returning to the GP. He told me he'd never seen a child with those symptooms for 5 weeks without a break and there must have been a day she was ok. I just kept repeating it was 5 constant weeks.

I'm just so fed up of it. She needed very little breathing support in SCBU and didn't come home on oxygen, so by rights her lungs should be as good as any other 13 months old (well, 10 month-old really), but she gets so many viruses that it's beginning to get me down.

When she's feeling ok (even if she has a cough/cold) she's got a lovely personality, but I just want to have my little girl back who doesn't cough till she's sick at least once a day, who doesn't have sky-high temperatures if i don't give her calpol/nurofen on a 3 hourly rotation, and who doesn't feel miserable.

Is there light at the end of the tunnel? Should I be fighting to get this investigated? She has been re-referred to paediatrics but the appointment's not till the end of June. Is this constant illness normal? Is it my fault for taking her out to socialise? I think we'd both go mad cooped up in the house all day though.

AAAARRRRGGGGHHHH!! Thanks for reading, and well done if you got this far. I'm just miserable, as you can tell.

No advice/commiserations?

You poor thing.

I don't have any advice as I am a complete baby novice, but it sounds really stressful for you and your DD and my heart goes out to you.

Hope someone who is more knowledgable comes along.

She sounds like a child who will just be constantly plagued by this kind of thing unfortunately.
Not because of her history, because there are tons of kids out there who have not been trhough what your child has, and they suffer this too.
My dads son is exactlyt he same, at the GP weekly for this. he is never free of a snotty nose, coughs/colds/wheezing and he is now 6 years old.
He is just prone to it.
You sound like you are doing all the right things, it is jsut riding the storm and waiting for her to grow out of it i spose.

I can tottally see why you are concerned that there is more to it, but on the other hand it may well be as simple as, she is just gonna be bothered by this, as many many kids are.

Ds suffered with croup, his best pal suffers terribly from ear infections, has done since he was tiny, niece has regular tonsilitis, has done since she was tiny.
May be just one of those bad luck things.

Sorry I can only offer virtual tea and sympathy, I have twins and they have constantly got colds from September through to June, my dd's last cold/cough started 6 weeks ago, she is still frothy at nights. Twins are now 6yo - and I never took them out much till they were 3yo, the benefit never outweighed the benefits, aswell as myself suffering depression!

I pray this will all be good for their immunity, (gosh I hate it when people tell me that) and that they will be healthier older children. My eldest was poorly till he was 5yo (only 1 week off in whole of his infant/junior years) he is now 14 and never, I mean 'NEVER' has time off school!

I feel pretty sure that being premature makes a difference to childrens immunity!

DD wasn't really ready to be born, but ds paved the way, she was tube fed to start with, I do think this is all relavant to her suffering.

Sorry for all the waffling on!

And a big 'POOH' to that horrible doctor you spoke to!

dd2 has cp (she's 6 now) and had similar upper resp/ chest/ virus history until she was 5. this winter, for the first time, she didn't need antibiotics once!

for the past two winters we have had the ok from the gp to hold 'in case' antibiotics at home for periods.

she's still snotty , but much much much less chestier and coughy. i do feel we've turned a corner, so it's not necessarily a life-time issue. xx

oh, and lol at the consultant - dd2 would ooze snot from september until may, with associated coughing and gargling. a real delight...

You have my total sympathy, it is the age when all babies get every bug going but I know ds2 who (28wks) seemd to suffer more & everything took longer. He stayed on his nutriprem for longer & was given vit supplimetns despite having a varied diet.

His first 2 winters were awful but things have slowly improved (he's 7 now). Although it did get to the point where he wasn't picking up between bugs & became very sleepy, blood tests revealed he was anemic - something to do with wrong shape cells for absorbtion???? Anyway he was put on a long course of iron & that really seemed to help.

Oh & NOT your problem for taking her out ds2'S Consultant said he prescribed fresh air for all his prem babies

Oh dear sounds horrible I know a bit of how you feel as my dd seems to be constantly ill and also can't remember the last time she was free of all bugs! She is 4 though so bit bigger but is now awaiting a tonsillectomy and adenoidectomy as they have been infected so many times they now are part of the problem and effect her breathing esp at night. Also constant ear infections deep sigh have you thought about some crainiopathy? Its quite expensive but might help - I think it works better on young children, also baby massage and maybe looking at her diet? Sometimes a milk intolerance can contribute to children being full of phelm! Also baby vitamins!

Although have to say I have tried all of the above and although have helped a bit they def have not been a cure all!!!

i had a prem baby too at 33 weeks but alot bigger than yours. he was 4lbs. But i was told when they are prem,their lungs are under developed and they are more prone to chest infections. Im glad your little one needed little help to breathe but they were incredibly small to cope without alot of help. Maybe this is just going to take time for the lungs to catch up developmentally

when a baby has bronchiolitis the airways can remain sensitive for many weeks afterwards.
Have you got asthma,hayfever or eczema in your family

Thanks for all this, guys. Looks like we just have to ride it out - although will look into allergies - the house is pretty dusty as velcro-DD won't let me do housework. Needless to say I've now got the temp and feel rubbish. Ho hum.