cystic fibrosis/coeliac

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  • #1928
    MissyG
    Member

    hi all,

    i had a bad wk last wk with my dd she was one a while ago & i had an appointment at the coombe to see the paediatrician & he was slightly concerned about her weight. she was born 7wks premature & my ds was also born premature but he caught up pretty quickly so i have been down that road before, but its the first time the issue of weight has cropped up…. so i was slightly worried about that as i thought i was feeding her enough & that her appetite was good enough.
    then last wkend she started going off her food & i thought it might be down to teething so i tried to do what i could & she started gagging & puking feeds up even though she wasn’t ill or anything & being concerned again, brought her to the public health nurse who advised me to play down mealtimes & encourage my dd to feed herself some of the time…
    in the meantime my dh phoned the paediatrician & voiced our concerns & he asked us to visit him on thurs in crumlin children’s hospital at his clinic which we did.
    he still said he was concerned & ordered a load of bloodworks on her & urine samples & chest xrays. he wanted to test for cystic fibrosis & coeliac. although there is no history of either in our family anywhere along the line. i’ve to bring her back in 2wks for a sweat test & provide a stool sample before getting all the results in jan. the reason he asked for a stool sample was because of the amount of times a day her bowels moved – it can be anything between 2 to 4 times a day.
    however, he said he was happy with the chest xrays so we kinda assumed it ruled out cystic fibrosis – we are worried sick about her cos she is still quite small & petite.
    i decided to try and slow down her feeds to give her a chance to digest food properly & her appetite has returned to normal & she is eating well again. she also hasn’t had as many dirty nappies…
    is there anyone out there that can shed any light on my situation?

    a very worried missyg

    #49396
    Taylor5
    Member

    God Missy you must be up the wall, Im sorry I cant help or advise you but will say a prayer that allgoes well.
    My ds is 2.5 and up to about 10 months ago he did 3 or 4 poos a day, now it 1 maybe 2 a day. I put this down to him being a bf baby then I switched him to Cow & Gate formula which is very like breast milk and keeps the bowles soft and regular… sorry I couldnt be of any help.
    Good luck and try not to worry, but I know thats not easlly done

    #49420
    happymumblemum
    Participant

    Missy cant really offer any help just wanted to say hope all goes well xx

    #49576
    ciarac
    Member

    Hi Missyg, well my sis is a coeliac and no one in the family has it. There is a great irishweb site that you can ask q’s etc on it, do a search think its the irish coeliac society, and they have a forum etc where you could find out more perhaps? is there diabities or any other illness in family? for CF, you and your dh would be tested to see if you carry the gene, so since ye weren’t I would fairly rule that out, they seem to pick that up straight at birth now.
    Did your paed mention reflux? my 2 have it and can be a nightmare, puking, weightloss etc? maybe mention this to him?
    also as a friend of mine who has gone through this with 3 out of her 4 boys, and she was sent for same tests when she was young, she and her boys have a v high metabolism rate (sp?) and therefore will always be lighter than others, but they eat healthy etc so was eventually told not to worry……. after months of it……
    best of luck, hope all is cleared up asap.

    #49594
    noeleenw
    Member

    my dd was always being weighed etc and was always on the very low side of the weight gain graph ended up after some tests that she is petite and that is the way she is no medical condition shes 3 now and still light for her age so dont worry

    #49940
    MissyG
    Member

    thanks a million everyone, i just wanted to pick ur brains!!! fingers crossed all goes well i’ll let u know once i get the results.
    i suspect myself its a high metabolism cos she just does not stay easy, she’s extremely active & i can tell she’s gonna be a tomboy by the way she follows her big brother around! however, no harm being cautious & i’d rather know…
    thanks again, you’ve given me food for thought! 🙂

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