My Daughter who had a Kasai 14 days ago was put on Alfare along with Breast Milk. But she hates the formula and her milk consumption is dropping.....
I am at a point where my tears roll as see her not drinking, I try to force feed her and ends up with her vomiting. Real desperate situation....
Few parents tell me Neosure is better but I am yet to check with the surgeons....
Any views from other Kasai parents?
I meant 26 days ago...not 14...sorry
Hi there, would you like me to put this on our face book page to see if we get any replies there. It may worth having a word with you GP and see if he can get you in touch with a dietician or ask for an early appointment with your consultant. - Jacquie
That would be awesome. I just wrote to GP for an appointment tomorrow ....but may not get it.
I will post it now. If you have a letter try calling your consultants secretary and she if she can get you in. I will let you know as soon as I have any replies - Jacquie
Just got an email says Brodie's milk is better.....
I would get the suggestions together and run them past your GP/health visitor/ consultant just to make sure they are suitable
This is GP saying - Brodie's milk is better.... Do you know what is Brodie's milk?...sorry I am not native English speaker
No worries, I don't but a mum did reply see below. I will look at brodies and see what I can find out for you
Harry had a late kasai at 9.5 week and I was told to alternate every breast feed with caprillon. I made the muck up every day for months and carted it around. He never once drank it and carried on being breastfed til 10months.
Sorry I didn't copy all the message, see below.
Harry had a late kasai at BCH at 9.5 weeks and I was told to alternate every breast feed with caprillon. I said no, so they suggested one formula feed a day. I made the muck up every day for months and carted it around. He never once drank it and carried on being breastfed til 10months. He has never struggled with maintaining weight, but was monitored regularly until 6months old. In hindsight, the docs and specialist nurses says this might be because he was breastfed. From a personal view, I don't believe BCH was geared up for breastfeeding mums. On first admission we were asked for formula type and regularity - breastfed on demand was greeted with surprise. I have rarely seen anyone else bf or express on the ward. I obviously don't know the particulars of this baby, but I would suggest mum speaks to the dietician about the possibility of continuing breastfeeding. I honestly believe it did my Harry a phenomenal amount of good
Thanks, in our case the dietician says breastfeed will only work for immunity. They have to go give formula as the kid is underweight.
The problem is the gastro team and surgeons have a final say than the dietician here...hopefully will sort it out tomorrow.
lets hope so. We have a couple of leaflets on feeding I will send you the link. Also if you would like to receive I will send you a link to be put on our mailing list .
childliverdisease.org/Infor...
childliverdisease.org/blogp...
Please do.
Also we were lucky to be able to finance medical care but post my Daughter recovery I plan to open a fund in Singapore. We hope to raise money for parents who can't afford this.
In few months would like to connect and explore how can we join forces
That fantastic.
see below another reply from a mum.
Robynn had her Kasai at almost 9 weeks, i too was breastfeeding and her weight up until then was great for a liver baby, we were given Caprilon for her and i would give her
a bottle or two of that a day as well as breast milk .... eventually i started to dry up so she was fully on Caprilon which she liked. I can't remember when she came off that but it would fill her up nicely so sometimes she wouldn't eat all her food (although nothing could stop her eating a muller rice she loved them) so we just cut down the amount she would have if she wanted food aswell or changed the time of when she would have a bottle. I think she may have been taken it for almost a year actually, between 10 months and a year sounds right.
It is upsetting to go through a point of them struggling so i hope you get her the right milk real soon.
Take care X
Hi, another parent has posted a message, see below.
Bertie had caprilon, pregestimil and generaid plus as well as breast feeds. He didn't like any of them but would take a bit then have a breastfeed. Tell the dietitians your baby won't take it and they'll probably change it for you. It's really hard work- keep strong, you will get there. X
Hi, like other parents here our daughter was on Caprilon after her Kasai procedure and she thrived on it. Once she was well and gaining weight, I added a bottle of expressed breast milk each morning. (I had been pumping breast milk since her health issues were first diagnosed and continued doing that for about 2 months, so we had quite a lot of frozen breast milk to give her.)
Once she was about 1 year old, we were able to stop using Caprilon and gave her standard follow-on formula in addition to solid foods.
I hope your allocated dietitians are able to help you with the problems you are experiencing.
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