baby breathing/weezing/chest infections/ Cystic fibrosis or something else?

[sleeppeacefullybabyboy]

Im looking for any help/advice/words of wisdom...
My 9 month old baby has had non stop coughs,colds, blocked nose since she was a few weeks old. When she was 10 weeks she was admitted to hospital with bronchiolisis. The cold ect have been put down to recovering from this but im unsure if it would really go on for this long? She has been given both blue and brown inhalour to help with her constant weezing but neither seem to help. In the mornings she is very congested and struggles to eat or breastfeed due to the sheer quantity of mucus. People often comment about her ratterly breathing sounds. she often chokes on mucus if she has been crying(its like egg white mucus sorry tmi!!) She has been put on antibiotics today but i dought much will change. This has been going on since almost 3 weeks old as she suffered from reflux and we presumed it was all the sick making her breathing ratterly.

since about 6 months she has suffered from constipation and at night sweats a huge amount.

I'm really quite concerned and have been referred but our appointment is not for a further 6 weeks. It feels like a long wait :(

Anyone experienced this??

[PoppyWearer]

Did your baby have the heel-prick test for CF soon after birth? That should have been one of the things they tested for - check the results in your red book.

No other advice but I hope you get some answers soon.

[sleeppeacefullybabyboy]

She did, but i have since seen that there our 1000's of mutations and this only covers a few of the most common ones :/

When i was pregnant i was scanned fortnightly as we my previous baby was stillborn :( and at about 30 weeks there was a 'dark area' on her bowel which then vanished and at the time CF was mentioned then dismissed :/ at the next scan when it was no longer there...thats why i know the heel prick come back clear as i was worried about it before...

[SurvivalOfTheUnfittest]

Sorry for the loss of your first baby.
Is your dd on any medication for reflux? Our boys have suffered really badly with it and I eventually realised through the dietician that they were very intolerant to cows milk protein. Their constant runny noses dried up overnight and they seemed a lot healthier generally. They did have gastric issues - one had diahorrea and the other had constiption. May be worth asking for an allergy test it to discuss whether it could be related to dairy intolerance when you see the paediatrician. Don't do it without their advice though, as you need to make sure she gets a balanced diet.

[sleeppeacefullybabyboy]

thank you survival. I did consider this at first, and another mum i know mentioned it this morning actually. She herself doesn't often have any dairy and has been totally bf since birth tho i have heard dairy can pass through breast milk and cause a problem in affected babies. I only have milk in my coffee but apparently this can be enough to cause a problem. i see its also in bread etc. When she was a couple of weeks old i remember looking all this up and any breastfeeding sites etc say it can cause a problem when mums eat it/drink it, though the Dr always dismisses it. I'll always sway towards believing the breastfeeding experts tho its so confusing...

[sleeppeacefullybabyboy]

i think maybe il cut all dairy from my diet for a couple of weeks and see if anything changes while waiting for the hospital appointment

[KrazyKurls]

DS1 was like this and underwent testing for CF at 18 months, he hasn't had the heel prick as we lived out of the UK when he was born.

It all came back clear, the peads said that he wasn't getting strong enough antibiotics so he would only get rid of 90% of the bacteria then it would come back worse. After a really string course of antibiotic injections 4 years ago he hasn't had a sniffle since!

[SurvivalOfTheUnfittest]

Have a wander over to the cows milk allergy support website or Facebook page as the mums on there have been an invaluable source of knowledge and support to me. Do be wary of removing dairy without medical advice though as you need to make sure you are getting all the right parts of your diet. Don't forget it includes butter, marg, yoghurts, cakes etc too.

[Letitsnow9]

Does she taste salty when you kiss her? Kids with cf often do

[sleeppeacefullybabyboy]

oh i never considered that krazykurls, we always get given that same old banana tasting one Thanks survival i have been having a look o the milk allergy site and could be that i guess. I don't think she does taste salty...i have licked her head while she was asleep lol

[tholeon]

There are two conditions, tracheamalacia and laryngomalacia, which are possibilities. My son had tracheamalacia as he result of a rare, correctable, birth defect. If you google floppy larynx or trachea it will explain a bit. Both generally self resolve in time. Of course it could be something completely different, or nothing. You must be very anxious, particularly given your previous tragic loss, but try not to jump to the worst conclusions. I think that the heel prick test picks up the vast majority of cases of cf. Is your baby gaining weight well?

[sleeppeacefullybabyboy]

thanks tholeon that's really helpful. Iv just looked them up and it really could be one of these also. Im defo feeling the anxiety for having to wait, im not getting much sleep, i feel like i have to check her all the time

[hellhasnofurylikeahungrywoman]

Does she sweat easily? DS was a sweaty betty and we were warned this maybe indicative of CF. Both my two were sweat-tested for CF, it is a relatively easy and pain-free test, it might be worth asking your GP for a referal for testing?

[KrazyKurls]

Coincidentally DS has the condition that tholeon mentioned, he has grown out of it now but his cry as a baby was like a wee squeaky mouse!

[sleeppeacefullybabyboy]

In the day time she isn't particularly sweaty but at night she can be soaked, even with no covers on and in just a nappy :/

[mintyneb]

is your daughter gaining weight? One of the other symptoms of CF is 'failure to thrive' as the body isn't able to absorb nutrients from food properly. This is usually accompanied by bulky, loose, greasy foul smelling stools. If you were to flush the contents of her nappy down the toilet you would would probably see a film of oil floating on the water afterwards.

As to the skin tasting salty, if I were to kiss my daughter (who has CF) sometimes she can taste just like a packet of ready salted crisps, particularly if she is hot!

With regards to testing for CF, the sweat test is seen as the main diagnostic tool followed by genetic tests. The heel prick test just looks for a marker in the blood that indicates the presence of CF, it doesn't test for mutations. It is possible to have a false negative or positive result though which is why some children can slip through the net.

However, it sounds like an allergy or intolerance may be the more likely offender in your daughter's case (my daughter by chance is also severely allergic to milk and has to carry an epipen with her) exascerbated by the bronchiolitis which I have heard can make babies more susceptible to lung infections for a time afterwards.

Good luck in getting to the bottom of the problems. If a change in diet (as advised by a health professional) has no impact and you are still concerned about CF then you need to get a sweat test carried out. If your GP drags their heels or its taking too long for a referral, contact the CF Trust and ask for details of your nearest CF Centre who should be able to organise the test for you

[HoppinMad]

My ds (also 9 months) is similarly always sniffly, with runny nose, chesty rattly cough and quite wheezy. He seems to be like this permanently since a nasty cold he had a few months ago which was treated with amoxicillin liquid.

I mentioned it to the HV other week, and she said the cough is probably down to the pureed foods which are sticking in his throat making him cough i wasn't too sure what to make of that tbh as he hardly has pureed foods now.

I have noticed though the runny nose is worse when he is teething. Not much help op, but hope our little ones get better. X