My son is now 4 months and after having brilliantly stable levels for a few months he is now yo yoing all over the place. Our dietician has told us to give him 14oz of regular milk and at least 18oz of formula into him but every feed is a struggle. He has gone from having 4oz of each at a feed to fighting me to take 2oz of each. Its so distressing to watch, he screams so much he makes himself sick. I just don't know what to do.
We have started to give him a rusk mashed up with some formula and he loves it so was wondering if anyone had experianced similar or had any ideas we could put to the dietician?
Kayleigh and Riley xxx
It's next to impossible to make them eat or drink when they don't want to. We've run into this before and looking back we were usually able to figure out that Liam was not feeling well, getting teeth,… and refusing anything we'd give him, which then would affect his levels. Hopefully, he'll soon be back to himself and his 'old habits'.
Sorry didn't mean to attach that poem there…still figuring this site out!
I 've been at the same position when my daughter was around that age (she's nine now). What we were doing at that time, was that she was having throughout the day two different combinations of milk. It was a mix of regular milk and formula with different ratios of each. Further more, she was having a concentrated protein mix (PKU1 of Milupa) only in one combination. I found out after 3-4 days of refusing to eat and lots of crying, that she preferred better the milk containing PKU1, which is now having every time. I think at this age they start to have a more developed taste. Maybe this is the case with you, she prefers the one combination to another. Try to figure out if she's having one meal and skips the other.I hope this helps.
I had the same problem as you . when my son was under 8 month, his appetite was low and our dietition said to us : he should eat 24 bushel of comida A . now he is one year old .his appetite is going up . now they said he should eat 11 bushel of comida B . these problems always exist . but we should control the condition with our patience.
Isla also went through this when she was teething although she was a little older than Riley I think. And then again when she was a toddler and going through fussy eating stages. I was tearing my hair out at the time – I am such a perfectionist and wanted Isla's levels to be in range every single time, and if not I became desperately worried that she would be damaged.
But the one thing I have learnt is that this diet isn't an exact science and it will not always go perfectly. As long as you get it mostly right most of the time it will be fine. Also I made it much worse by worrying so much about Isla – I once tried to feed her formula from a syringe 10mls at a time which made my life unbearable – and hers I should think! I am now much more relaxed and if she doesn't drink all her formula in a day, which still happens every now and then, I just let it go and she almost always has it fine the next day.
The diet is a hard balancing act and it is completely unnatural not to worry but at the same time logically you know it is better for your child if you are relaxed! So I really feel for you. But please be reassured that every child with PKU goes through these phases, whether through teething, illness or just plain stubborness! Isla's levels went up into the 800s once for a few weeks, and she is absolutely fine – in fact one of the brightest (and bossiest!) in her year at pre-school.
I hope things get better for you but please feel free to email if you have any questions.
i had the same problem with the same situation , but she got through it . It was hard especially for me and her dad , but she is now three yrs old , and eats like crazy she wants more juice and pops then her milk but were working on that at the moment . good luck for u and the baby