Prescription and/or High Energy Formulas Thread

[willow77]

Marleysgirl - sounds like the weaning is going well now, has Andrew got any favourites?

Puddings! It's funny how he can sit there being fed puree dinners, not wanting more, I'm full Mum ... And then he wolfs down his pudding!

Haha Poppy is just the same, she would have nothing but puddings if I let her!

 

[sleeping bubs]

Hi all sorry ain't been on here for a while well wot can I say Mckenzie is now eventually eating a bit better which means his milk feeds/amounts have dropped now having between 3-4bottles a day (one during the night still!!) around 15-20oz of milk a day. Now introducing him to lumpy food and finger food which is interesting lol (still no teeth) Got him weighed on Friday he put 4oz on in 2weeks now 13lb 12oz so getting there.

How is Poppy doing, Willow? I wished Mckenzie would eat puddings lol still having mains then nothing else lol

 

[Marleysgirl]

Hi all,

We're still on Infatrini and Stage 1 Meals, but I'm going to move Andrew up to Stage 2 meals now that his appetite has been stimulated. His milk intake has dropped from around 700ml a day to about 550ml.

 

[sleeping bubs]

wow Marleygirl thats alot of milk!! Mckenzie has always struggled to have 500mls a day and now he is eating more thats dropping!! But he does drink a lot of water a day and gradually increasing how much he eats tried a stage 2 jar today but had to mash it up a bit!! He is getting better at chewing even though he still has no teeth!! Mckenzie is now 37weeks and eventually gradually getting used to eating such a slow start!! But I guess he has a small tummy!! But now getting a podgy one lol Getting him weighed on Friday so hopefully e has put some weight on lol

 

[broodylocket]

well my lo wasnt prem but hes allergic to cows milk or so they think.

hes on nutramigen formula and breast milk now. the tin is so small 425grams.

 

[sleeping bubs]

well to true form Mckenzie didn't put much weight on but he did put it on, 4oz in 2weeks now 14lb hopefully my normal hv will be at clinic next time getting fed up with the hv there at moment wanting to refer him to Dietitian but he is getting better with food now having 7month + Heinz powder food not that keen on stage 2 jars at mo and having more finger food!!

 

[Marleysgirl]

We're off the weaning again at the moment, Andrew's had a really bad stomach upset (had to go to hospital for 2 days) and he's reluctantly taking his Infatrini milk now, not interested in solids. Hope he starts again soon.

 

[sleeping bubs]

wow bless Andrew I hope he gets better soon. Well Mckenzie has now began to eat lumpy food better and chewing it (well gumming it still no teeth!!) On another note have gone back to tommee tippee bottles as they are smaller and lo can try and hold them better, his new milk comes out of them much better than nutriprem ever did now often taking 5-7oz in around 10-20mins can't believe the difference was worried he wasn't going to drink from them

 

[Lottie86]

Findlay is on Neocate for 3 reasons:
1. he has a cows milk protein allergy
2. it is a formula that is very easy for the body to absorb without needing to work at breaking it down
3. It is suitable as a sole source of nutrition

He has his feed extra concentrated to get more calories into him as he cannot tolerate volumes and he also has high calorie powder added into his feed at a rate of 5% to bump the calories up even more. Even with all of this he only puts on around 120-140g per month.

Unless he has been crying a lot he usually has around 948ml per 24hrs.

 

[willow77]

Hi Ladies,

Marleysgirl - I hope Andrew is better now, you must have been so worried.

SleepingBubs - how is McKenzie, you must be pleased with him having lumpy food

Lottie 86 - Poor Findlay, is he able to have solid food at all or only special formula?

Well Poppy is now a chunky 14lbs 4oz and is between the 2nd & 9th centile and is just starting to wear her 3-6 month clothes. The weaning is hit and miss some days she only has a few mouthfuls, loves spinach and cheesy bake though and would eat this everyday if she could. She seems to prefer finger foods really & feeding herself so think I may go down the route of BLW.

Her head is now on 75th centile so her consultant is quite concerned and she had to have a brain scan (which was all clear) am now waiting for some results from a test she had done for a rare disease where you can't break down proteins (Glutaric Acidurea Type 1). Am worried sick and hoping they come back negative but if she does have it at least we know and can hopefully get it under control before the toxins attack her brain. If they do come back negative then she will still need further tests due to the abnormalities in her last urine sample!!!

Poppy such a happy little girl, when they did the last blood test she sat there smiling away bless her.

 

[sleeping bubs]

oh bless ya willow I hope Poppy's test come back ok! She is piling on the weight now bless her. Yer pleased with Mckenzie having lumpy food beginning to give him toast and finger foods more now which he seems to prefer! Hoping he has put some weight on waiting for him to be around 15lbs cos hopefully Huggies little walkers pull up nappies will fit him cos he is a nightmare changing his nappy doesn't stay still but think these are a little more expensive! But once he is 18lb plus I can use the supermarket banded pull up nappies which are cheaper!!

 

[Lottie86]

He just has his milk through his tube, he has nothing orally.

I hope Poppy's tests come back ok.

 

[Mumof42009]

Sorry havent been around for a while my little mans been up and down with one thing after another he has been having problems with his breathing and been really wheezy but docs wont say if its asthma or not until he is one! He is now on Nutramigen 2 doing ok on it his weight gain is slow and he hardly drinks milk is more interested in his food!
Im still finding it a nightmare with foods etc so still make alot myself and he also has fruit pots which he loves, i have to keep reminding my girls not to give him anything they shouldnt.
We are having allergic tests in sept so will find out exactly what he is allergic to.
Does anybody have any probs getting milk from there doctor? mines really bad they will only give 2 tins a week and it dont last me im seriously thinking about switching gp because of this cause they dont seem to understand thats all he can have to drink.

 

[sleeping bubs]

Well Mckenzie is been referred back to the hospital AGAIN!!! Dropping on the chart but still gaining some weight but only 3oz on in the last 3weeks!! Can't believe it thought he was eating more and drinking between 15-20oz milk a day and even having extra bottle in between breakfast and lunch.

Doctor said she has to refer him cos dropping centiles (below 0.4 anyway) but she doesn't think they will do anything cos he is healthy and VERY active lol but might see Dietitian to alter diet so higher calorie content, which would be helpful.

Not getting him weighed on friday cos I know wot they r going to say plus he was weighed today at the doctors!

Well hopefully appointment comes through soon

How is everyone elses los doing?

 

[Marleysgirl]

Andrew's dropping on the charts too, but that's down to a bout of d&v a couple of weeks ago!

He was on steroids for a while, and his appetite for milk increased greatly, to the point where he was having almost 1000ml of Infatrini per day (5 feeds). Shame it didn't last, he's back down to around 400ml/day now, together with 3 weaning meals. We've just be referred to a dietician too, but I know what she's going to tell me, about hiding butter & cream within food.

 

[willow77]

Hi Ladies,

Sleeping Bubs - hope the referral goes ok sounds like Mckenzie is just an active little boy who burns off most of his calories, is he still on Nutriprem (sorry can't remember) since Poppy has been on Infatrini she has come on leaps and bounds and was between the 2nd & 9th centile at the last weigh in she was below the 0.4th centile before the change in formula so think it definately agrees with her, that and all the advocado I feed her lol.

Lottie86 - Will Findlay be allowed solids eventually? Do you have good consultants & Dr's?

Marleysgirl - Is Andrew all better now? I hope your dietician is better than Poppy's, I have just cancelled her last appointment as it is a complete waste of time. Does Andrew like Advocado? Poppy happily eats it on toast in the mornings

Mumof42009-hope your little one is ok xx What a nightmare doctor, I am lucky as my doctor is really good and never queries the repeat prescription even though did a huge batch of cooking and added LOADS of milk so had to order more alot sooner than normal. Could you perhaps have a word with your doctor?

Poppy has a viral infection at the moment, was worried it was measles and even the nurse thought it might be so called the Dr in to check, and she said some babies come out quite badly in spots to any infection, poor little girl looks like mummy has decided to get the red pen out on her and gone crazy! Thankfully her temp back to normal and she eating again

She is being retested for Glutaric Acidurea as her last results have come back inconclusive consultant said if this is the same he will change her formula for 2 weeks and test and if still the same she will need to have a skin biopsy so could take a few more months yet to get the results. Her consultant is hopeful she doesn't have it so trying not to worry tooo much (haha who am I kidding!)

Just out of curiosity do any of you use reuseable nappies? if so how do you find they fit your skinny little ones? I use a mixture of both and can't believe how expensive disposables are especially branded one, gotta love the baby events at asda, sainsbury's etc,. have just stocked up on wipes from sainsbury's today

 

[welshbaby]

we have lactose free milk on prescription little one loves it

 

[Lottie86]

Lottie86 - Will Findlay be allowed solids eventually? Do you have good consultants & Dr's?

All of our consultants and therapists are absolutely brilliant He would be allowed to eat solids now but due to his issues it is impossible at the moment. He associates food/liquid in his mouth with extreme pain so goes absolutely mental if you try and feed him as he thinks you are trying to cause him pain. We try licks of food with him every day and have to use special brushes in his mouth for 10mins first and also thicken the purees (and when we tried water in a doidy cup, which we have totally given up on for now, we had to thicken the water) otherwise if he does swallow any he tends to choke.
When he has licks the purees have to be exactly room temp, even slightly warmer or cooler and he has even more of a meltdown as he has a sensory issue with temperature amongst other things. He also still has his tongue thrust reflex which should have disappeared a long time ago and is not conducive to eating.

His gastro consultant and dietician said they would normally really be pushing a baby of his age to have solids but they can't with him as he does not feel hungry even when he has been starved for ages for an anaethetic (so cutting down his tube feed wouldn't make him feel hungry to 'encourage' him), one of his other conditions means his stomach does not empty without medication so he can only have little volumes in his tummy without being in pain which means we'd have to have his milk off for a while to allow his stomach to empty to then feed him and he wouldn't get enough calories in to make up for the time off the milk and he needs every calorie he can get as his weight gain is awful despite being on huge amounts of calories.

 

[sleeping bubs]

HI Willow 77 thats good news about Poppy's weight, Mckenzie is on SMA High Energy since march, but hasn't really helped he loves Avocado but hoping to have advice on high calorie food. Been a bit off his milk today but noticed when wot in city some blood in his mouth then his first tooth poking though so guess that is why lol

WOW marleysgirl 1000ml of milk lol Mckenzie has around 450 - 600mls of milk a day varies quite a lot and 3 meals (sometimes breakfast doesn't stay in him for long) but weight issue is still a problem.

Lottie86 I hope Findley gets on well and its great you have so much support

Well hospital appointment is Friday 30th July so will c wot they suggest

 

[Marleysgirl]

Marleysgirl - Is Andrew all better now? I hope your dietician is better than Poppy's, I have just cancelled her last appointment as it is a complete waste of time. Does Andrew like Advocado? Poppy happily eats it on toast in the mornings

Just out of curiosity do any of you use reuseable nappies? if so how do you find they fit your skinny little ones? I use a mixture of both and can't believe how expensive disposables are especially branded one, gotta love the baby events at asda, sainsbury's etc,. have just stocked up on wipes from sainsbury's today

Andrew is better as far as the steroid treatment goes, it did the trick, though it's something we have to watch for in future. His feeding has gone erratic this week - sometimes he'll only take 80ml of milk with solids, and other times he'll guzzle 150ml! I'm glad the overnight feeds have stopped again. As for liking avocado ... well, neither of his parents like it, so there's none in the house to try him on!

We haven't had the Dietician referral yet, I bet (knowing the NHS) that won't come for a month or two. Not sure what s/he'll say anyway, I know all about hiding cream & unsalted butter in food, and using his milk to mix things.

I have to admit to contributing to the landfill problem by using disposables - I just couldn't face the storing & washing for reusables. I'm on my last box of nappies that I bought before Andrew was born! I'd bought boxes of size 2 & 3 in various events, but of course he was born tiny so I had to buy Mini & more size 1s for the first few months. I'm hoping somewhere has an event soon (Asda after the World Cup is rumoured) so that I can stockpile again. Though I'm not sure what to put him into - he's been in New Baby style to this point, and I hear horror stories about the new ActiveFits.

Lottie, how is Findlay doing? I have to confess I hadn't gone and read about Findlay's various health issues until today. Gosh, and I thought we had problems with Andrew What size is he? As you mention on your site about the difficulty in finding toys etc small enough - I wondered if you wanted to hear our experiences of finding age-appropriate yet size-appropriate things for Andrew.

Oh btw everyone - Andrew has TWO teeth! One down, and then one up!