upset and confused

hi, i have a 3 year old daughter with asthma, she,s had it since she was about 6 months old.

Her asthma has been getting worse and she is now on steroid tablets,montelukast powder and an orange inhaler, she is going into hospital tomorrow night to have her SATS/heart rate monitored as she has sleep apnea.

Last week her respiratory consultant told us he wants to check for cystic fibrosis as he is concerned that she has had a lot of chest infections.

Nursery told us the other day that they have noticed her lips turning blue/purple on a couple of occasions, they havent done anything about it which we are extremely upset over.

I guess im asking if anyone has been in this situation before, the cystic fibrosis test and also her lips turning blue are extremely worrying for us.

thanks

[Hidden]

I know how you feel

Hi,

I'm really new to this as my daughter was only diagnosed as having asthma about 6 - 7 weeks ago so we haven't been managing it as long as you have. The reason I'm posting is because of the Cystic Fibrosis mention. My daughter is 11.5 months old, had her first chest infection at 8 weeks, then another at 5 months, then pneumonisa at 6 months, then another chest infection at 10 months and had not stopped coughing since September 2006. She frequently coughs until she throws up and this varies from between once and five times a day depending on whether her breathing is good or bad. Our GP, who is very supportive, started asthma medication about 6 weeks ago and we had very little success and things actually seemed to get worse. You mention the blue lips, this happened to Holly a couple of weeks ago and was the main reason we asked for a referral. We asked to be referred and when we collected the referral letter were pretty devastated to see him suggest that he felt it would be prudent to rule out Cystic Fibrosis. We have since seen a Paediatrician with her who has put her on oral steroids (which so far seem to have had very little effect) an orange inhaler (Flixotide) and we're also now giving 8 puffs of Salbutamol 4 hourly for 24 hours, then 6 puffs 4 hourly for 24 hours etc. following a trip to A&E yesterday. At the moment he does not feel it is necessary to test for CF but I'm left wondering whether it would be a good idea given that she really isn't responding to the steroids. I also have this lingering doubt in the back of my mind as to whether it might by CF rather than asthma.

I just really want to let you I do know how you feel. I can't offer any advice as we're still living through the same thing but I have done some research about CF now and it may be worth you having a look at a few websites. As with everything, as soon as you start to read you can find information that makes you think ""Yes that's what she has"" and then you can find other information that makes you think ""No, we don't have to worry about that"". As soon as I started reading stuff I swung between the two opinions almost hourly but I prefer to be a bit prepared but I know not everyone is like that. There are two ways in which they test for CF, one is a sweat test that assesses the amount of salt in the child's sweat. In children/people with CF the result is higher as the CF affects the way in which your body deals with salt. The other thing they can do is a blood test and carry out a genetic screen. As I said, at the moment we haven't had either done.

I don't know if this has been of any help at all but just wanted to let you know that you aren't alone.

Thinking of you

Lianne

[Hidden]

Hi Jenrose

I just had to reply to your mail and say how astonished I am that your childs nursery don't think to act or notify you when your childs lips go blue/purple!!

I've never used a nursery/childminder for my daughter so I've no experience of these things. Is this normal practice for a nursery I wonder?

Totally flabbergasted!

Jacquimac

[Hidden]

thanks for the replies, DD is having the sweat test done tomorrow as well as a full blood test, ive held off reading about CF cos i dont want to upset myself further.

She already has Cerebral Palsy in her legs and suspected Autism and i dont want to know about anything else as well!

Thanks for the info, will keep you posted, please post and let me know how your daughter gets along as well

jen

xx

[Hidden]

jenrose as a qualifed nursery nurse although i don't work in a nursery i can't believe that they are not acting if your childs lips are turning blue. If it was me i would be asking to speak to the manager of the nursery and say that if it happens again not only should they seek medical advice but that you should be informed immediatly. I would really push for action on this and as all nursery's have an accident/incident book i would feel that this should be noted in there and if it were to happen again the action that should be taken.

good luck and let us know how you get on

katharine

[KateMoss]

Good nurseries should report back everything out of the ordinary that happens.

My Niece has a book which has everything in it that she does each day play wise etc , if she has been unwell (If calpol given etc) if she has been hit by another child or if she has belted someone else! ( she is only 23 months).

I would speak to whoever is in charge ASAP! ( as said by others here)

I hope you can find out ASAP about the CF test results - either way the results will be some sort of relief and the apropriate treatment can be started. There is a lot better outlook now for people with CF. For asthma there may be some tweeking with meds needed ( this can be a bit trial and error as there are a wide selection of treatments and some will work and others may not - not an ideal situation but sometimes the only way to gain some control back to the breathing problems)

Anyway, Good luck to you all

Best wishes

Kate

[Hidden]

Me again

Hi Jenrose,

Sorry I just realised I didn't say anything about the nursery issue. Holly is also at a nursery and I am incredibly fortunate that they are excellent. Like someone else mentioned we have a Home Link book that we can write anything in. I also wrote them detailed instructions for today regarding her Salbutamol dose and was actually wondering whether they would agree to do it but they have individuals within the nursery who are trained to administer inhalers and the nursery manager actually went and gave the Salbutamol to Holly today.

I know I didn't need to tell them but I have written in my note to them as well that if she goes blue around the mouth or starts to breathe very rapidly and this won't settle they should call an ambulance. In normal circumstances I would be taking her to hospital at this point (after what I learnt yesterday from very helpful people on here!) and I'd rather they over react than leave it too late.

Hope things go well tomorrow.

Lianne

[Hidden]

cf tests and steroid resistance

Hi,

My little boy, Alfie, is now 4. When he was very tiny he had continuous emergency admissions to hospital and picu for his asthma. As a new born he had bronchilitis and we believe that probably this is what set of his asthma. By his 2nd birthday he'd had 20 admissions to hospital!!! At 11 months he had his first visit to picu and a ventilator. I'm telling you this so you'll appreciate I really really empathise.

One of the routine things that they have to screen for in a child that has continuous wheeze is cf. There are 2 ways that cf presents generally it either starts of as a failure to thrive or chest stuff. Most children do not have cf. Don't panic unless you have to. I hope that you'll discover very soon that this is not her problem.

Alfie has had several courses of high dose steroids and many times on steroids intravenously he has also had long peroids of time where he has had alternate day oral steroids. Now, however he is on azithromycin as well as his very high dose of flixotide (850mcgs daily) and the antibiotic is helping him far more than the oral steroids ever have done. Having said that he still has major flares and courses of both oral and intravenous steroids.

Alfies consultant is fairly convinced that there is something other than asthma going on with him because he responds best to the cf treatment but has tested negative for cf. She is going to repeat the test but he shows no evidence of failure to thrive although long term use of high dose steroids can mask things.

monteleukast can help some asthmatics hugely, with Alfie it has made a difference maybe but we are not convinced.

Lips going blue/purple!!! the nursery are foolish beyond belief!

Take care, good luck and try not to panic until you know you need too. (easier said than done - I often panic!)

Margot x.

[Hidden]

jenrose hope all went ok today. have you evr read the poem call special mother? its a lovely poem abouth special children only being given to special mothers who can cope. if yo u would like a copy please pm me.