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  1. #91
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    Hi there!

    Yes we did actually. Over 1000 signatures to send off. Just writing the cover letter now. Fingers crossed!

    Just a quick comment on laxatives - my one struggled on lactulose. Caused quite a bit of cramping. (Did the same to me when I was given it after epidural - TMI? Sorry!).

    We use osmolax (prescribed by the paed gastro) but you can also get it over the counter. I'd always talk to a doc before giving laxative to a bub but osmolax works a bit differently to lactulose in that it just pulls water into the bowel to soften up the stool to make it easier to pass. What I found remarkable about it was that wind was passed so much more easily and with no pain. She occasionally looks a bit shocked at the sounds / whirlwind coming out of her bot but that's about it for distress around the whole toilet business for us now. ;-)

    Will keep you posted on the petition response!

    Just thought I'd throw it in.

  2. #92
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    Default looking for some help please

    Hi everyone i'm sorry to hear you have all had dramas with the scripts for the formulas. We are very new to all this. Our 4 1/2 mth old had us in hospital at 10 days old from vomiting blood. Once we were admitted we were told he was malnutritioned and had liver problems, possible blood clotting issues, he had infections in every cuticle on his fingers, urinary tract infection and he had of course lost weight. after close to 10 days in hospital we managed to get some weight on him. Turns out i barely had any milk. worked really hard with bf and began formula top ups. They initially said the blood was from cracked nipples but it definitely wasn't. His problems weren't fixed but we'd gained enough weight we could finally go home. 2 or 3 days before we left hospital he began pooing blood. They told us it was a tear in his bottom/bowel and that they would refer us to a paed surgeon in case it needed to be operated on. We got in to see the surgeon couple wks later and the bleeding was of course getting worse. After his exam he couldnt work out why we had been referred to him but he was fantasic. He checked all our bloods, urine samples and then asked extensively about our feeding routines. at this stage i was bf, expressing and formula topping up. He believed we were cmpi. His 11 yr old daughter was so he knew so much about it. He rang and spoke with the hospital paed, gastro and at 4pm on a friday afternoon organised a script for Elecare so we could get started over the wkend without any delay. Within 24hrs the bleeding from his bottom had stopped. He had constant bloody nappies. Nothing else, just blood. I then cut out all milk protein and soy from my diet and continued bf and topping up with elecare. It took a couple of wks before all the other horrendous symptoms seemed to ease. For the first 6 wks of his life he slept maybe 4-5 hrs a day and screamed in pain the other 20 hrs.
    I feel like I have a new little boy. He has really turned a corner for us thankfully. We are now at the stage where we should be thinking about introducing solids. We have been referred to a dietician to help us with this process and we've just had tests done to see if we may have egg, nut & grass allergies as well. We do however suffer from severe reflux. We're on the compound version of losac twice a day but by the start of the 3rd wk, I can see a total change in my bub. the cultures start to deactivate and he is in terrible pain. These days I can feed him, burp him and he'll bring up sometimes probably half to a full bottle. you can pick him up 2 or 3 hrs after a feed and yep, he'll then projectile another 100mls. I'm wondering about mucous nappies. What does that mean? you are all talking about them. I just checked a photo of some nappy types and I think my bub has always done those since we've been on elecare. They're quite green/olive in colour but vary from quite watery to sometimes stringy. Is that normal for bubs on these special formulas? I've never really thought to much about the texture of his nappies. I was just so excited not to have blood in any these days. Sorry this is such a long message. Thanks for your help, it's greatly appreciated

  3. #93
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    Default Neocate /elecare or any prescribed formula users

    Niknik - that all sounds terrifying! We never got blood thank goodness. The mucous in their poo is a symptom of intolerances. DD had days where her nappies were full of dark green mucous. Even now that she's almost 15 months old and we have successfully reintroduced dairy we still get a small amount of mucous sometimes. We got it when she was exclusively on Neocate as well so I think it's normal to get it occasionally.

    Their poo on these formulas is pretty nasty lol! We were warned when she started on Neocate to be prepared for sticky, smelly dark poo.

    Are you seeing a paed gastroenterologist? Your bub sounds like quite a severe case.

  4. #94
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    Wow so you've successfully introduced diary to ur little one? Was it a long process? Did u have any reactions along the way? Haha yeah the nappies can be pretty wicked! Honestly I think our nappies are always diarrhoea or mucous. They've been like that for a while. Yeah I think he is a pretty severe case. As hard going as it was I think I'm grateful for the way it happenBecause he is so severe, we found out at 6wks or so and have been able to adjust. I can't imagine having a 4/6 month old, introducing solids & trying to work out what's causing all the dramas.
    No we havent seen the paed gastro. There's been lots of talk but it hasn't happened. We weresitting in the drs suites thinking it was the paed gastro but they had actually got us in to the paed surgeonfirst. He asked what the gastro said & I laughed & said isn't that u we're seeing? I know the paed & surgeon have both talked to one about us but we've never seen him. I would love to see him but I guess for now we're gaining weight, not bleeding & the screaming in pain has stopped. We're waiting on a dietitian before we do anything with solids & waiting on a rast test to see what other allergies he might have.
    My little one suffers horrendous reflux. Is that something that seems to come with milk preotein allergies? It sounds like a few kids suffer from both

  5. #95
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    Default Neocate /elecare or any prescribed formula users

    Yep, DD had terrible reflux. It disappeared as soon as she went on Neocate full time. Her paed recommended challenging her intolerance at age 1, so we started giving her food with a little dairy in it (like a little cheese on her dinner or something cooked with a little milk). I thought her reflux had come back initially but then she got a head cold so I think it was just bad timing. We started again and now at 15mo she eats cheese, yoghurt and has milk in cooking with no issues at all. We did it fairly slowly and I still haven't given her straight cows milk to drink but I'm pretty happy with the progress.

    Good luck with the doctors, it sounds like they're collaborating on a care plan which is great.


 

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