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Original poster

Frantic mum - ds being tested for Cystic Fybrosis

59 replies

Joshjunior · 27/01/2004 11:01

ds has continued to make only small weight gains (2-3 oz wk). Saw consultant yesterday, wants to test for Cystic fybrosis - dh and myself devistated that this may be the problem. Have to wait over a week to get the test done. ds is fine in himself, is on Neocate food due to cow protein intolerance, poo is soft and green but apparently this is normal on Neocate, consultant appeared concerned by this. ds is 10 weeks old and 8lb 3oz. Has anyone else been in this situation. Help!

OP posts:

zebra · 27/01/2004 11:14

One of the Mumsnetters who comes on in the evenings has CF in her family, I don't know of anyone else. If you add another message to this thread around 7:30pm (which will bump it back to the top of the Active Conversations Listings) she'll probaby see it and may be able to talk with you about it.

Loobie · 27/01/2004 11:44

Joshjunior i have no experience of cp but i know my waiting for a dx of autism for ds1 was just the worst time ever so my sympathies are with you and yours at this time.Hope everyting works out ok.

mears · 27/01/2004 11:53

I haven't been in this situation but have supported a friend who has. Her Ds did not gain weight for a very long time and was put on Pregestamil at the time (a few years ago). Her Ds was tested for CF (which is a standard test for babies 'failing to thrive' and it was negative.
Her son was just milk intolerant with no other problem identified. He is a small but otherwise healthy 11 year old now.
Sorry you are having to go through this worrying time. Hopefully it will be good news.

mears · 27/01/2004 11:54

Sorry, that winkie wasn't meant to be there

Luckymum · 27/01/2004 12:28

JJ - we were due to have a CF test for our dd who was failing to thrive....she had very green mucousy (sp?) poo. We never got that far in the end as they found something else, but I do sympathise with you so much. Fingers crossed that the CF test is clear.

Harrysmum · 27/01/2004 12:30

Joshjunior - can only sympathise - we are waiting for second confirmation tests for my dn. Her CF flag came up as they include it in the Guthrie test now (or at least in Edinburgh) along with a host of other signs e.g. no weight gain (actually, continued weight loss), bright green pooetc. Does ds taste salty? Dn does - v salty and it's quite odd and quite different from "regular" babies. It's awful waiting and wondering; fingers crossed for good news. I've posted about this on another thread (health: continued weight loss in newborn) and Mears added a really helpful link on CF (headlined about bf and cf but has lots of other interesting info).

justtheone · 28/01/2004 00:00

I am really sorry to hear that you are in anguish about your DS. My DS was premature and was very slow to gain weight. At 5 months they decided to test for reflux and also tested for CF. I was told, as Mears has mentioned, that the CF test is a standard test for babies with low weight gain. DS eventually went on reflux treatment but weight gain has continued to be a little fraught. Did the consultant give any reason for the CF test other than the weight gain problem? Is the CF test part of a series of tests or is it the only test they are doing?

Jimjams · 28/01/2004 09:24

I was about to mention the salty taste. If it does come back as CF remember its a very variable condition. My cleaner's dd has it, but she's living a totally normal life (she has 2 kids)- her condition is very mild.

robinw · 28/01/2004 09:48

message withdrawn

Original poster

Joshjunior · 28/01/2004 13:39

Thanks for all the replies. Am staying at my parents with ds at the moment due to boiler problems at home so have got everyone to lick the poor child! Have to say that there is no evidence of a salty taste. To justtheone, I think the consultant was concerned about the weight gain and the look and smell of his poo. It is dark green, soft but not runny and does pong a bit (doesn't it usually?). I did speak to a paediatric dietician and described the poo, she felt it was normal for a baby on neocate. He 'goes' once a day after his midday feed. Consultant has also taken bloods for thyroid check, she says a thyroid problem doesn't always show up on the Guthrie. In himself ds is fine. Apart from the weight gain or lack of, he is getting longer, sleeping less and is much more active.Remains a generally happy boy. I will post on the allergy section and see if there are any other neocate babies around. Again thanks for the support, sorry about the length of this!

OP posts:

Blu · 28/01/2004 13:57

JJ, I am sure the waiting will continue to be a huge strain, but this does all sound re-assuring. You're not being 'long', this is important! let us know what happens.

fio2 · 28/01/2004 15:52

my sister had cf I cant post much today but will read more tommorrow. If you want to get in touch with me please feel free

my sister was wonderful btw

fio2 · 28/01/2004 15:54

zebra i assume you meant me!

fio2 · 28/01/2004 15:59

sorry must add i know lots of babies who are failure to thrive but are completely normal

zebra · 28/01/2004 16:05

Yes, was thinking of yourself, Fio2; hope you didn't feel singled out.

harman · 28/01/2004 16:08

Message withdrawn

JennH · 28/01/2004 16:10

I havn't been in this situation, but i hope everything goes ok for you. When was your son born, because he sounds a similar age to my daughter.

Thomcat · 28/01/2004 16:15

So sorry you're going through such a worrying time joshjunior - hope everything turns out okay. Please do keep us updated. Lots of love Thomcat xx

aloha · 28/01/2004 17:48

If he's not salty, I think CF is unlikely. I will be thinking of you.

MABS · 28/01/2004 17:51

my ds , also prem at 29weeks, was tested for this at 9 months. He was always very small, didn't feed well and had constant chest problems. But , it was clear so don't despair just yet. I was distraught when they tested, but have since found out that it really isn't that unusual to run the test. Take care, any questions - just ask.

fio2 · 28/01/2004 19:10

i hope this doesnt sound pretencious but i am glad they are testing failure to thrive babies for cf. My sister was definately failure to thrive and my mum was so convinced there was something 'not right'. If she had a gp like some of yours, that sugested she maybe right instead of 'neurotic', that would have helped my sister no end. I am glad you mums and dads that have had babies tested that were negative, thats great. If they were pos then it would have been better that they were diagnosed earlier iykwim (maybe not!)

hope i dont offend

fio2 · 28/01/2004 19:12

sorry just read my last post it does sound a bit nasty, sorry again. I mean my sister would have done alot better if she had been diagnosed alot earlier.

tamum · 28/01/2004 19:16

Not nasty at all fio2, quite right. My first thought was that it's good that they're testing sensibly really. There are so many other possible reasons, most of them more likely than CF, but it's definitely better to get it sorted sooner rather than later. Try not to worry joshjunior (easier said than done, I know).

fio2 · 28/01/2004 19:20

tanum thanks can i email you tommorrow about somehting?...sorry

tamum · 28/01/2004 19:21

Yes, of course fio, any time. You OK?

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