Does anyone know about Cystic Fibrosis?

[silverfrog]

Dd2 is 13 months old. She has always had poor weight gain, and we were finally referred when she dropped off the bottom of the charts (born at 50th centile).

Saw the paed today, and he wants to test for cystic fibrosis. Have googled, and not happy.

We ahve to go next week for a sweat test? Does anyone know what this is/had it done? Apparently it takes about 90 mins - can see dd2 not being thrilled at that thought...

The other thought the paed had was to test for coeliac disease, but dd2 is GF/CF due to family history already - but she is breastfed. I know dairy/casein proteins can pass through breastmilk - can gluten do this in the same way? Could she be being affected by dairy/gluten from me? (preferable thought to cystic fibrosis, but admittedly may be clutching at straws)

hi silverfrog, I'm sorry to hear your little girl hasn't been well. this might help wrt info - but you'll need to speak to your paed re: specific questions

maybe it takes 90 mins for sweat test to work - hadn't got the impression from families i spoke to that it was a long, drawn-out thing (they got results the next day iirc)

Thanks for that, bundle.

Dd2 has always been the happiest little thing, she just hasn't grown much! she was 7 lb 13 oz when she was born, and is 15 lb now at 13 months...

I know I should have asked the paed, but had dd1 (autistic) with me, so no chance for proper conversation .

tbh, I was expecting him to just say that dd2 was fine, just small, as she is always so happy, so it threw me a bit when he suggested further testing. Hopefully it's just an elimination process, but you can't help but worry once it's been mentioned...

silverfrog, it's definitely worth testing, one of the families i met only had a diagnosis when their 2nd son was born (the only clue - there was no slow weight gain etc - was a prolapsed rectum when they were potty training him)

It is just an elimination process and the likelihood is that your child is healthy but small.

Testing for CF is standard practice in all 'failure to thrive' (I hate that term) children.

Thanks for the reassurances.

There is definitely something going on with dd2, despite happiness. she eats like a horse, but is tiny (and isn't particularly overactive either, so not burning off more than she should), and for the first time today she has lost weight. Not just slipped further down the charts, but lost 5oz over the last month

Still, the more we investigate, the clearer the picture will be.

was hoping someone might know what the test would entail (thankfully dd1 will be at preschool when we go for it - so at least I'll be able to concentrate on what I'm told next week!)

HOpe that the you get the result you want silverfrog. My ds1 had a test for this and it doesn't take that long to apply the sweat patches, but you need to leave them on for a while. My best tip is, to try and get her as active as possible during this period. It can often take a few tests for enough sweat to be produced.

Does your dd have a lot of colds, and bronchitus? I know CF isnt just about that, but that is still one of the most common signs of it?

sweat test

I haven't really restricted my diet. I did a little for dairy, as dd2 seemed to eb reacting (had loose mucousy poos every so often) but these have cleared up so haven't bothered so much recently.

Dd2 is GF/Cf due to family history of autism (dd1 is ASD and highly gluten intolerant, so ahe kept dd2 as GF/CF free as possible until we can tell if any ASD traits) so didn't think to restrict my diet on that account.

dd2 hasn't had a lot of colds, but the few she has had have ben nasty (and she is particularly suffering this week, which might be why I'm panicking a little over cystic fibrosis being mentioned - she is horribly mucousy, really thick nasty green stuff (TMI), with a horrible rattly cough that she can't shift)

Thanks for the info re: test - doesn't sound too bad, but I bet it'll be tricky getting dd2 to leave the patches alone

Don't remove gluten from your diet until DD has had the tests for coeliac disease as it won't work if she isn't getting gluten/gliadin.

DS had the sweat test done as he had a really manky chest for ages and it was one of the things to exclude. It really was no hassle at all - they put a gel pad on their arm and wire it up for 5 minutes to put a drug into the skin to cause sweating. Then this little cassette is taped to their arm and you stop them picking it off for an hour or so. Some hospitals can do the reading straight away - we had ours back before he'd gone into have a blood sample taken for immune system function.

please don't restrict diet, for reasons given below

A sweat test is not that bad and not invasive. They will attach some electrodes on pads (nothing scary.. no needles) to her skin in various places (neck, belly, back, upper arms maybe, it varies) having first put something on her skin to stimulate perspiration.

It's then you have to wait while the pads collect sweat. It doesn't hurt and she can play in the waiting area; you can read to her; she can watch a dvd or whatever.

The test itself is fine. Don't worry about that.

And stop reading about CF. It is more likely NOT to be CF. If it is, come back and post. Despite what you've read, CF is not the worst thing in the world; it just feels like it at point of diagnosis.

Has she been plagued with chest infections since birth? How many times has she been on anti-biotics?

have you a large extended family? If nobody in your family has cf then fingers crossed your dd does not have two copies of this gene. IF she does, then as a 13 mnth old they will have caught it relatively early, before her lungs have been damaged.

Over run, no.. chest symptoms are not the earliest signs and people with CF do not get any more colds than anyone else.

What are her poos like Silverfrog? Frequency.. consistancy.. colour.

typing one-handed, so please excuse typos, and in haste as both dds are marauding...

dd2's diet is already restricted as outlined - and will remain so for the forseeable. If we need to do a coeliac test (which the paed hasn't referred for at the moment as she is fairly GF) then we will introduce gluten for that.

no large extended family, so no previous history ythere.

She has been quite healthy on the whole, but if she does get a cold then she goes down with it badly (see previous post on crrent state)

poos: variable is the best way to describe her poos. Since weaning (at 6 months, ex bf before that) she has has a history of loose runny poos. Every 3-4 days she would have extremely loose, mucousy poos which would last for a day or so then clear up again. Not linked to illness/teething, and fairly sure not linked ot any particular food.

In between, her poos are pale-ish, and still mucousy to an extent (ie solid and formed, but coated in mucous, or wih mucous contained within).

In the last 6-8 weeks the loose runny poos seem to have cleared up (and we thought she had gained weight - hah!) but pale poos remain. She will poo anywhere between 1-4 times a day.

She eats enormous amounts of food, and eats well within the restrictions earlier outlined.