Hi everyone, we are still waiting for genetical tests to make right diagnosis for my 5 month old baby girl, but all pretty much looks like she is having Alagille Watson syndrome according to what doctors say ...she has liver issues, kidney dilation and pulmanory stenosis ...Big forehead, no butterfly vertebrae though ...anyway I am here to ask if someone who has babies with same problem can give me advise on special diet , dietician called us but didn't seem very helpful, just told us her diet should be full of protein , so blend veggies and chicken or steak and give it to her) the problem that I 'Ve just started her on solids about 3 weeks ago but what she really seems to like is rice baby cereal and apple purée 🤔She is not a good eater, mainly still on special formula which is called Alfaire, but can't take more than 120 ml per time. I tryed to propose her a bottle and food every hour even but she just starts crying and refuses and eats only when she wants ...also she is very petite , only 5 kg at 5 months and still wearing size 000 clothes....would be very grateful to get some handy advises on nutrition and interested at listening stories of your babies, how to make life easier with baby with such a rare and difficult syndrome... it got to a point that I am both fisically and mentally very tired, no friends or family around here...I live in Australia at the moment but all my family is in Europe so far away . Thank you very much
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Dina1986
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Our son has a different rare liver condition but I can really identify with the issues you're dealing with and the challenges of putting very well-intentioned dietician advice into practice.
Our son was three months old when we were told breast feeding wasn't right for him as he wasn't able to absorb the milk. He really really didn't like the special formula which was recommended. In the end we fed him through a nasogastric tube for several years to make sure he had the nutrition he needed, whilst we offered / tried / encouraged all sorts of other things by mouth (I remember him enjoying apple purée and rice! Mash and gravy also a favourite later).
He was also taking numerous medications over the years and I wanted to make sure he didn't associate me trying to give him things by mouth with unpleasant tasting medication. So generally his medication went down the nasogastric tube too.
Having a nasogastric tube in itself was a mixed experience but I will always be grateful for the way it enabled him to have a good basic nutrition so we didn't have to fret about his not wanting to eat very much at all. It was good to be able to focus on the pleasure of eating rather than worry at every meal.
It was surprising how many people out and about (parks, cafes etc) approached us to say that their child had also had a tube for a while.
Several years down the line, our son has a healthy though not huge appetite, enjoys a wide range of foods, and takes meds from syringes very easily.
Everyone's experience will be different and I can't comment on the specific advice for your daughter. However I would summarise my learning from these experiences as:
(a) your maternal instincts are there for a reason ... an extremely useful guide to your daughter's needs. Trust your instincts.
(b) things change over time... we struggled for ages with drinking from a cup but got there in the end.
(c) children thrive best when they are content - this is at least as important as their nutritional intake in terms of calories etc. although it isn't generally recorded on dietician plans.
You have a beautiful daughter... wishing you all the best and enjoy lovely times together.
Thank you very much for your reply Sarah. You are right mother knows the best for her child, and it actually helps a lot in our situation. I will try to introduce her different things she might like, visiting paediatrician on Monday and will ask him also lots of questions. We didn't discuss feeding tube yet with gastro team, but afraid it can be very good option if my daughter won't put on some weight.
How's your little one doing now? How old is he now? To be honest I can't fully enjoy my little one yet, still being in a shock after we found out she had liver condition. Feeling like someone just have stolen all the joy from me, but trying to think positive, it's good to realise we are not alone and there are people to talk about it ! Xxx
It is such a shock to hear about the diagnosis. I hope your appointment next week is really useful and you will be able to ask lots of questions.
Look after yourself too. I think it's natural to feel stunned and it can feel overwhelming at times. Talking can definitely help!
Our son is seven now and is a happy little boy... he had a transplant two years ago for a different condition and thankfully it has really helped him to thrive.
I'm afraid I can't be of big help as my son is only 6 months and we are only just introducing foods. Your daughter looks like she is doing well from the photo. My son is only 5.4kg at 6 months, he is on special formula too but infatrini peptisorb with extra calories added in. As far as I'm aware this will still be the main part of his diet for a little while yet. He currently has an NG tube to give some of his milk as he only drinks 50ml at most from his bottle every 4 hours, so the rest up to 120ml goes down his tube. At the minute the only thing he can eat without gagging and throwing it back up is baby rice, everything else is too thick. I don't think it helps that part of his food pipe contains a tube! As far as I'm aware Alagille kids can eat normally but not much fat. For now at her age just get into her whatever you can solid wise in addition to what milk she will take, and just keep trying new foods.
Thank you Emma 🙏🏻 yes, she improved a lot and doesn't look the same jaundice as she used to, she was really olive at 2,5 months, doctors started to test her for biliary atresia, but finally her bilirubin levels dropped 3 times and she had 2 biopsies and cholangiogram, was such a scary journey, still is but now we know a bit more about it at least. Her bilirubin is still a little high, but she seems to be better . She is not a good eater at all, takes 100-120 at maximum, I still feeding her at night , sometimes couple of times. Started her on solids just about 3 weeks ago, but she still pushes out the food she doesn't like, takes ages to feed her, pretty messy... hope things get better as she gets older.
It sounds like a very similar journey although my son only had 1 biopsy. I do feel more relaxed the longer he has been out of hospital and now that he is putting on weight. We still feel every 4 hours even through the night although he usually has the whole feed through his tube at night so we don't have to wake him. His extra calories are something called Duocal, I don't know if that would be safer than extra formula as I know they are usually quite strict with formula: water ratio. She may not be ready for solids yet, pushing it back out again can be a sign of this, they are quite set on waiting until 6 months in England at the minute.
Ok wow, my mum says I was weaned early but my lo has only just shown signs of wanting solids in the last 2 weeks and still really gaggs on them a bit too much. Hopefully someone with an older child could give us some insight! Not sure what else to suggest.
Seems that my lo isn't really ready neither, it's just they want to put us on solids as extra food supply, which isn't working properly yet ....we mainly on formula as well . Thanks anyway for your support 🙏🏻❤️️
We also put one extra scoop of formula in her bottle as dietician advised , gives her some extra calories per day , just hope it won't make big impact on her kidneys . X
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