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Experience with Milk Intolerance in Babies

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I was wondering if anyone has any experience with babies with milk intolerances?

My daughter is 7 months and we've just been discharged from hospital (was there for 2 weeks) and they've said she has extreme reflux and (they think) severe milk intolerance so she is now on a prescription formula. Obviously this is going to be tricky with her weening, does anyone have any tips etc? Or even how they've found having a child with an intolerance. Thanks

PinkElephant26
25 days ago
What do you think of this?
Ann1984
Ann198425 days ago

This wonโ€™t be a problem with weaning my last was on prescription milk and I would make it up and add to cereal foods etc. She is 4 now and grow out of it

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MrsCraig
MrsCraig25 days ago

My son was on prescription milk. I just used his prescription milk in any cereals or foods that I made for him. I made all of his stuff from scratch and if I did buy anything just checked the ingredients. My son is now 2 and he is no longer on prescription milk and on normal cows milk. Weaning will not be a problem but if you are worried then ask to speak to a dietician.

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PinkElephant26
PinkElephant26
Original Poster
25 days ago

Thank you for your replies Ann1984 & MrsCraig... i was wondering if i could use her formula and add to foods. She is under a dietitian who is going to check in weekly with us but as we've just got home from hospital i havent spoken to her yet.

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MrsCraig
MrsCraig24 days ago

PinkElephant26 yes you can absolutely add her formula to foods. We had a dietician, we saw 3 different ones, 2 were brilliant, one was absolutely awful. She was meant to contact us after our son was discharged from the hospital. She had to be chased up by the cardiologist and it took 4 months before she actually saw us and when we saw her she made me feel like I was a bad mum because he didn't even register on the centiles and she said that I obviously wasn't giving him enough milk. She hadn't even read his file. Needless to say I never saw her again!

Make sure you ask them anything you are worried about and they can advise with recipes etc.

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PinkElephant26
PinkElephant26
Original Poster
24 days ago

MrsCraig I have actually tried to get hold of the dietitian today with no luck. Needed to ask a couple of things and also about her prescription as i went to pick it up today and they've given me 14 200ml bottles of infatrini peptisorb (formula) to last 2 weeks but she's having 3+ bottles a day as she's being every 3 hours (even during night) as advised by dietitianand doctor - bottles are not going to last 2 weeks!! So annoyed!! Doc said i need to clear it up with dietitian first ๐Ÿ˜ค why cant things be simple!!

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MrsCraig
MrsCraig24 days ago

PinkElephant26 we had that issue with his bottles too when we first got them. He was also on infatrini and he would feed every hour day and night as he wasn't capable of big feeds and we went through 3 bottles a day as well. I just kept phoning until I got through to her. I rang the main hospital as well to make sure I had the right number for her and they transferred me through and she picked up straight away! After that I made sure that the Dr was allowed to prescribe the milk, but it was because it has to be initially prescribed by a dietician, when we first got it she just handed us a box, so it hadn't actually been prescribed, so the Dr couldn't write a prescription. Make sure to get a repeat prescription and if possible get a month's supply on the prescription. We used to get 4 boxes/96 bottles which lasted us a month. He had to be on ranitodine as well, his cardiologist emailed it through to the Dr's straight away after his appointment and the prescription was ready to pick up 20 minutes later! I kept think why can't the dietician do that! Also your pharmacy will have to order in the infatrini so put the prescription in about 5 days to week before you will run out. Like you I thought why can't this be simple! Hope you get through to the dietician and get it sorted out.

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PinkElephant26
PinkElephant26
Original Poster
24 days ago

MrsCraig sounds like the problem I've got at the moment...the pharmacy said it can take upto 3 days to get it in at the pharmacy. Luckily the hospital gave us a box of 24 to take home and i have about 8-10 of those left but i need to get the dietitian on the phone.

She is on omeprazole daily too but theyve given that as tablet form to dissolve and give it as its too expensive in liquid form ๐Ÿ™„.

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MrsCraig
MrsCraig24 days ago

PinkElephant26 yeah our pharmacy was normally really good and it was in the next day but sometimes it could be longer.

Omneprazole is what they give now instead of ranitidine. The infatrini can give them really bad reflux because it's thicker than normal formula and takes longer to digest. We had to give him his liquid ranitidine via a syringe (like the ones you get with calpol) alongside his many other medications, a dissolvable tablet sounds like it might be easier.

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PinkElephant26
PinkElephant26
Original Poster
24 days ago

MrsCraig the tablet doesnt dissolve fully and leaves little bits which she usually spits out and its a real fight to get it down her but this morning i added a drop of juice to it and she took it without a fight!

Been on the phone to the dietitian and she was furious that they had only given me 14 bottles, she needs 180 bottles per month! So after phoning GP & pharmacy they have put an urgent request for the bottles and they 'should' be there this afternoon. ๐Ÿคž

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MrsCraig
MrsCraig24 days ago

PinkElephant26 I'm so pleased you got through to the dietician and that it is being sorted! It is stressful enough when your child is ill without having to worry about prescriptions and having enough for them. I really hope it is there for you this afternoon

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PinkElephant26
PinkElephant26
Original Poster
24 days ago

MrsCraig thank you! We're slowly getting back into our routine, home schooling is back on ๐Ÿ™„ i have just been on my twitter account and i had 104 notifications - mostly the missed competitions i had been tagged in ๐Ÿ˜„ fingers crossed we have a little win ay MrsCraig!

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MrsCraig
MrsCraig24 days ago

PinkElephant26 ๐Ÿ˜‚ no doubt lots of the tags are from me! Hopefully you get a win.

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cocolgooh
cocolgooh24 days ago

My friendโ€˜s son had to have prescription milk and he added it to his foods etc as others have said. Unfortunately he didnโ€™t grow out of it as he got older but it wasnโ€™t a problem for him really, they just check packaging carefully etc.

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