chrissie I hope you get some answers soon hun

hi hope your are doing ok you must be going through hell.

i have a dd who is 2 with cf...i personally couldnt say it sounds like cf because of the cf i have experianced is different to the symptoms your describing. i would still demand a sweat test if i was you though. to wait 6 weeks sounds like they are taking the p*** to me! i have learnt with dd that if i want things checked i have to fight for it. i would push for tests sooner than 6 weeks away, and dont stop nagging your doc until her refers you to a specialist respitory consultant.

my nephew is alot like this though. not as bad but has been in hospital 5 times and he's only 19 months. he cannot breath and goes grey. he is on steroids and (ashma) pumps now and is under a respitory nurse at the hospital. he has broncitus (sorry cant spell it) when he was younger and now he has a terrible chest and sounds dredfull. and the hospital have said that his bad chest is down to having bronitus at a young age and he should stop being like this at about 5-6. know thats not much help when your going through it but thought i'd tell you someone else is going through a smillar situation. his mum is so worried and worn out by it all.

any questions about cf feel free to ask.

becky

i cannot believe how poor ur hopsital are being

what hospital are u under?

i would seriosuly ask for a referral to a childrens hospital, not sure where u r in the county but theres bristol, GOSH, alder hey or one in scotland cant remember its name

for ur daughter to keep going blue they need to find a reason and fast have they given u no explanation, i dont think its bronchiltiis than many times in such a short space of time, i think something else is going on and tehy need to find out now.

i would seriosuly consider getting a 2nd opnion, being referred to GOSH was the best thing that could of happened to us as a family, as we finally got listened to and they found out what was wrong.

did they say what tests they r going to do? 6 weeks is a alwful long time esp as she keeps doing it.

good luck, pm me if u want to chat further

Hiya

Thanks for all your relpies, since this post Caitlin was back in hosp, going blue again, they think bronculitis again..???

Anyway she still got a shadow on her lungs, i kicked off saying its not normal and they are going to do tests on her at out-patients in about 6 wks.... i'll post and let you all know what drs think this time...

I used gaviscon with sma staydown, its preparred different though to normal formula, its thick but not overly, as i then used thick n eas in the sam staydown, but it has less lactose in too, so aids digestion. Gaviscon doesnt thicken the milk, it stops acid build up that can burn oesophagus!

I bought new teats for ds (avent) and got the variflow ones, these have a BIG hole in top and helps the milk come out as normal teats have few tiny holes. My ds was diagnosed with reflux at 6-8 wk check and given gaviscon, by about 11wks, he went all seisure like in his cot just after midnight, i pulled him out, he wasnt responsive, all glazed over, and gasping for air, i called 999 ambulance came out he was then really sick in ambulnace and mucus, and the crew said he looks to haverefluxed into his lungs, and he was in hospital for 5 days.

then he was given thick n easy in his milk aswell as gaviscon. Before he came home he had gone to ranitadine stronger than gaviscon. THen domperidone for better digestion. Thick n easy is great tho and is not medicine! i used it to thicken his meals at weaning age, and also fruit i blended. He was sick the last time, actually on my wedding day when he was 11 months old.  Sitting the lo upright for aslong as possible after a feed helps too (if its reflux) for about 30 mins, like in a chair or bumbo and try entertain her. Also daytime sleeps i put ds in his pram with back raised cos he slept sooo much better.

At first wen i read your post i thought CF too, its classic signs x

sorry its long i write sooooo much xxxxx

I think u should try thick n easy, u can get it over counter at chemist, it helps kep the contents of stomach quite rigid- you can use as much as you want, at first ds's was like glue.

hi you can not use baby gavson with the staydown as it is all ready thinked and it will make it to thick has the doctor given you the gavsion??

you will find you need a big teat i used the avent bottles and had to get the vair flow teats as the milk is quite thick with the gavsion i would put it in the bottle just before i gave it to him ans shaked well to mix it

no tests have been done. They did a mucus test when she was rushed in and a blood test, but it came back clear, so they put it down to her having bronculitis and sent her home once her oxygen levels were ok.... been back to drs since then and he said just to keep an eye on her....

i have today though gone out and bought sma staydown, apparently it helps with reflux, just incase...

can anyone tell me how to use gaviscon with feeds plz????

aw  hun sounds so horrid, has she been tested for CF? i assumign she would of with being so poorly but if not i would defo ask.

as others have said theres reflux to, which can cause so many problems including apnoeas and aspiration.

what tests has she had done?

i would definatly ask to be referred to a speclist respiratory paed, whats ur main hospital? we was referred to great ormond street in london for my son.

theres a number of tests they can do, ph study, videofluscopry, sweat test.

i really hope u get some answers soon xx

so sorry to hear of all the trouble youve had

iv not read everyones responces to im sorry if i repeate any thing

my dd used to stop breathing for what reasonsare still unknown but have you got a monitor for her cot that has a sensor mat? if she doesnt breath an allarm will go off my dds on this and i tell you i sleep alot better knowing the alarm does wake me up

or failing that you could say your so worried you would like an apnia alarm  this sticks onto her tummy and if she stops breathing or has verrrrrrrry shallow breathing again the alarm will go off

if you need any advice on these feel free to pm me xxx

If i were you i would insist on having her referred to  a respiratory paedeatrician! Sounds very scary can totally understand why u are so anxious.  Hope it all goes ok!

I had the very same thing with my daughter now nearly 3, she was in hospital for 3 months after she was born, as she would just stop breathing for no reason they did the reflux test and many other test and they were all clear. she has a sweat test done a few weeks ago and it was borderline (waiting to see the consultant) i would ask to be refferd and keep at them untill your happy. i totaly understand where you are coming from and how worrying it is my daughter is alot better than she was but still has problems every now and then. although they can't say they have asthma untill there 2 (how stupid) they can give you pump to take home just incase it happens and untill the abulance arrives talk to your doctor again. i know it sounds stupid but somtimes you have to fight with these people. it makes me soooo angry xxxxxx

Don't know if this will help but you can get portable Apnoea monitor an alarm will go off if baby/child stops breathing . Your DD can wear  this all the time so not just for when she is asleep. Might be worth asking for one.

Liam (my ds1)has had problems with his lung, one of them has collapsed twice which is what led to him being tested for reflux in the 1st place, he has also had loads of problems with his chest.

thanks for replies, her cheast does seem to get worse when shes had a bottle.... also forgot to mention that drs found a shadow on lung when she was born, also drs found a second shadow when she was in hospital n other lung, the specialist thought milk had gone down the wrong tube i.e down wind pipe rather than food pipe.....

Hi Chrissie i would definately ask to be referred to a peadiatrician as my daughter was exactly the same she stopped breathing twice and her body went blue/grey she as milk intolerance and silent reflux, i actually thought she had cystic fibrosis her chest was that bad. I can't believe they just sent her home without doing any thourough tests, god what is wrong with the nhs these days they are going to pot, i have recently put in a complaint as i am sick to death of being fobbed off as my daughter as only been diagnosed 6mths ago and put on full meds at 14mths and she  is now 18mths and now a stupid consultant thinks she doesn't need to be on the meds as she is thriving, she as been a big girl since day one and she stopped breathing at 14mths old so only 4mths ago and they tried to do a ph study took her off her lower dose of meds and she was barely conscious and sounded again like your daughter very chesty and there were children on the ward with cf and my dd just sounded just like them. So to me your dd sounds refluxy and intolerant. Good luck. Sharon x

like pp I was going to mention silent reflux as my ds1 has this (he is now 5 but only just been diagnosed)but from the research I have been doing it can cause asthma and other problems.

I would ask for another oppinion as well, has she got a pediatrition?

Also I don't know if you have one but for my ds2 (nearly 8 months)I have a breathing monitor for him at night, it gose under the mattress in his cot (I lost a baby during pregnancy between my 2 boys and have been a paranoid loney with ds2 it has helped me get some much needed sleep)it just might help you relax a tiny bit more at night.

big hugs and I hope you get to the bottom of it soon.

could she be intollan to milk as this can make them chesty?could it be slient reflux as this can come up the thoat and into the lungs it can give them a chest infections sorry can not be more help

My daughter has been poorly since she was born (she now 5mnths). she sounds really chesty and bunged up. She sometimes coughs until she is sick, her breathing will speed up and she will start going grey around the lips.

She was born with a lung infection and had 5 days on intrevenal antibiotics. Since then she has had 2 courses of antibiotics. Non of these have cleared her.

about a month ago she began breathing really shallow, her head was bobbing with every breath, she went grey/blue across her eyes and lips. I rushed her to hospital and her oxygfen levels where low, she had to have oxygen, nebulisers (what they use for asthma). In the end they had to rush her through to resucitation because they where expecting her to stop breathing, she needed adrenaline and was transfered to intensive care. She was in a week and the drs thought it was bronculitus. She was in a oxygen box until she could manage to breath on her own. Then they sent her home.

Anyway been back to drs last week as shes still chesty, still coughing and still going grey when her breathing goes shallow. Dr said it might be asthma but it might not be and they couldnt diagnose anything until she is at least 1.

So here i am asking the best people for advice, mums....

i cant sleep properly incase i sleep too deep and she stops breathing, i hate leaving the room shes in and i am on edge when her nana or someone takes her out for a few hours....

I am exhausted and in need of advice..... dont know what to do for the best