I've been told off by my hv :(

[2bmum]

My lo has had 'faliure to thrive'. He gained weight on his centile for the first 6 weeks, then he started to go up and down. It's though to be to do with his heart condition and breathing. He's been up and down. Always gaining weight but some weeks 2oz and others up to 8oz. He's had different perscription milks but takes them for a little while, or 1/2 his bottle then screams the place down.
After weeks, and weeks of trying I managed to find a way to keep him happy as he prefers sma somewhat but does'nt gain enough on it on it's own. So now he has sma 5-6 days a week and his high calorie perscription milk 1-2 days a week. I've been doing this for 5 weeks, he has gained steadily now for this period of time. He still takes up to an hour per feed but is not as stressed.
My hv has been off for 6 weeks so I've seen other hv's instead. Mine is back in work and I've seen her today and told her what I'm doing. I got shot down for doing the above, and was told that it will confuse him and he will eventually stop drinking the milks I'm using all together, and mixing two milks is not recommended at all and she would have to put it in his notes that I am going against medical advice.
She's also said that the doctor won't keep giving him the prescriptions for the high calorie milk unless he is on it 24/7. He won't take the high calorie milk all week, he just gets worked up and refuses to take his bottles, I did try (as told by hv and specialist) and he went a day with only 1 bottle. I was'nt prepared to carry on with him not having anything.

So what do I do now when I run out of the milk? I thought I'd cracked it, but looks like I'm back at square 1 again.

 

[faille]

I'd be tempted to ask for a referal to a paed and not rely on your HV. She sounds like a right cow - she should be helping you not shooting you down!

 

[2bmum]

I've been seeing the ped since he was 4 weeks, seeing him again on 23rd.

 

[tmr1234]

i would tell her to p off sorry but what the hell dose she know. If he will not have it you can not make him. HV do my head in mine was talking to me like i didnt know what i was doing in the end i seid look i have a 5yr old child as well he is not my 1st when she seid when do i want her to come out agane i seid never! then got a call from some outher HV saying they wanted to come out and i seid no i dnt need you i will ring if i do they wasnt happy but it is up to me.

you are hes mummy and u know youer child best amd it sounds like you are doing a goodjob so i would carry on what you are doing

 

[ChloesMummy]

Did the oher HV's know how you were feeding while she was off? Their advice is so conflicting, speak to your pead about what what you are doing I would be more inclined to listen to what they say! It does sound like it seems to be working for you and baby though. Not all people agree but what about early weaning because of weight gain? Just an idea, im not sure! x

 

[Mum2b_Claire]

Did the oher HV's know how you were feeding while she was off? Their advice is so conflicting, speak to your pead about what what you are doing I would be more inclined to listen to what they say! It does sound like it seems to be working for you and baby though. Not all people agree but what about early weaning because of weight gain? Just an idea, im not sure! x

Experts now agree that it's milk that'll help more with weight gain, not solids. Milk has more calories.

If he'll take the sma then surely that's a good thing!

 

[AHB238]

SMA have a high energy formula....

https://www.smanutrition.co.uk/Default.aspx?tabid=636

Speak to your Doctor/Paediatrician rather than Health Visitor about maybe trying this....

I've found that our health visitors can't ever "recommend" or "advise" something, they merely mention something and say it's up to us whether we try it, due to so many people blaming them and sueing if something goes wrong, sad really, we just want a bit of advice from the "experts"...

Hope this helps. xxx

 

[ryder]

She cant make your pead stop givng you a prescription, she sounds like a total bitch. Id stay away from her and just see your pead tbh. The main thing your LO needs is some kind of nutrition, no matter where it comes from, alot of people who have "normal" babies go through several milks before finding an approopriate one.

Sounds like that HV has an issue with FF altogether.

 

[mommy43]

speak to ur peditrician when u see him tell them what u have been doing n explain its what u found that works well for u n ur baby usually they will agree if it works for ur baby to do it n they out rank the hv n there will be nothing she can do or say most peditricians know that not all babies are the same n if u found what works stick with it

 

[2bmum]

thanks for your replies ladies

To answer the questions asked, no I didn't tell the other hv's what I'd been doing with his feeds. His medical history is so intense in the write ups they'd get in a muddle and I could'nt be asked to explain it all to a different hv so thought I'd wait until my own hv was back as I've done that before with a different hv and she looked at me as if it was completely over her head.

I wanted to start weaning him but was told a big no to that as he might like the food and stop his milk intake altogether (words of hv).

AHB238 - thanks for the link for that sma, I've never seen it in shops before, I will ask if it can be ordered in, perhaps this alone will help He's on the sma blue carton or white whatever they call it. This could be something to try

You're right in that a hv can't tell you which milk to use and which not to use but she has given me info on different milks which I've tried to no avail. What she has said is that you should not mix milks and that mixing milks is against all medical advice as it confuses babies and eventually, more often than not they refuse to take milks or become more destressed so she's have to put that I am going against medical advise in his notes.

She's not saying she'll make my ped stop the perscriptions, just that he will say the same thing as her and tell me that he can't perscribe the milk to me anymore if he's not on it all the time.

thanks for the positive vibes ladies.

 

[lozzy21]

All i can say is bollocks! How many mums breastfeed and then top up with formula?

 

[Aidedhoney]

I would speak to your pead on the 23rd, your Oilver's mum you know whats working for him.
Its well known that cardiac babies use up more calories than a so called normal baby, before my Alex had his op they put him on infitrini (sp)? which he didnt tolerate at all, he lost more weight while on that cos he kept yacking it up even though he was been tube fed at the time. You have found something that works.

As for 2 different milks upsetting Oliver How many people give 2 types of milk ie standard during the day than hungry baby milk at last feed?

The latest one i am getting is to add an extra scoop to my feeds (this is off the diet doc even though Alex is gaining weight each wk) I am lucky that my consultant and pead are very understanding.

Good luck x

 

[Faerie]

I hope that your paeditrician is more supportive and can help you out with the milk problems. Must be so frustrating when he won't take one, I can understand you wanting to try different types

 

[2bmum]

I would speak to your pead on the 23rd, your Oilver's mum you know whats working for him.
Its well known that cardiac babies use up more calories than a so called normal baby, before my Alex had his op they put him on infitrini (sp)? which he didnt tolerate at all, he lost more weight while on that cos he kept yacking it up even though he was been tube fed at the time. You have found something that works.

As for 2 different milks upsetting Oliver How many people give 2 types of milk ie standard during the day than hungry baby milk at last feed?

The latest one i am getting is to add an extra scoop to my feeds (this is off the diet doc even though Alex is gaining weight each wk) I am lucky that my consultant and pead are very understanding.

Good luck x

Its the infratrini that he has on perscription, he'll take it for a few days/feeds but not all the time. I was also told by the regular doctor a few weeks back to go back to powders (Oliver hates formula thats not premade) and to add 2 extra scoops per feed or move him onto the next stage carton milk. Ped told me moving him onto a different stage milk would do nothing as all shelf bought cartons have around 600 calories per feed so wouldn't help. Then told the hv who said that the doctor should'nt have given me advice to add more powder anyway as it can cause more problems than good. You should always stick to the label on the tin. they ALL contradict each other.

 

[tmr1234]

i mix milk my lo has stag 1 aptermil throw the day and a stage 2 cow &gate at night and i did it with my older son as well

 

[tink]

Hello 2bmum,may ask what heart condition your son was born with?My son was born with aortic stenosis and had a heart attack at 3 days old,we knew nothing about it until this happened!As a result he is on neocate,lactose free milk,and i have just been told i need to get him to feed more by the cardiac dieticains.How many ozs does your little one take?
xx

 

[leeanne]

She sounds like a damn right bitch.

Seriously, what are you supposed to do....forcefeed your LO?

If he is gaining weight and thriving on the way that you are feeding him, than your hv should shut up and be happy. I'd have lost in on her.

 

[2bmum]

Hello 2bmum,may ask what heart condition your son was born with?My son was born with aortic stenosis and had a heart attack at 3 days old,we knew nothing about it until this happened!As a result he is on neocate,lactose free milk,and i have just been told i need to get him to feed more by the cardiac dieticains.How many ozs does your little one take?
xx

He was put onto the neocate at first to see if his faliure to thrive was because he was lactose intollerant, even though he showed no signs like being sick or having lots of dirty nappies He hated it, would'nt touch it. Then found out that the neocate is very low in calories so he'd need about twice as much of it for him to gain. So thought that was defeating the object anyway.
He is supposed to be on 160ml 5 times a day, but he usually only takes 90-110ml if I'm lucky, then has the rest 1/2 hour - an hour after the larger amount. He has abnormal and tricuspid valves, thickening of the chamber walls and a problem with his lung(s) which will be looked into when hes older as it's hard to tell the adsact problem until he is bigger. He also has a few other things but they don't effect his growth/milk intake.

 

[Aidedhoney]

I would speak to your pead on the 23rd, your Oilver's mum you know whats working for him.
Its well known that cardiac babies use up more calories than a so called normal baby, before my Alex had his op they put him on infitrini (sp)? which he didnt tolerate at all, he lost more weight while on that cos he kept yacking it up even though he was been tube fed at the time. You have found something that works.

As for 2 different milks upsetting Oliver How many people give 2 types of milk ie standard during the day than hungry baby milk at last feed?

The latest one i am getting is to add an extra scoop to my feeds (this is off the diet doc even though Alex is gaining weight each wk) I am lucky that my consultant and pead are very understanding.

Good luck x

Its the infratrini that he has on perscription, he'll take it for a few days/feeds but not all the time. I was also told by the regular doctor a few weeks back to go back to powders (Oliver hates formula thats not premade) and to add 2 extra scoops per feed or move him onto the next stage carton milk. Ped told me moving him onto a different stage milk would do nothing as all shelf bought cartons have around 600 calories per feed so wouldn't help. Then told the hv who said that the doctor should'nt have given me advice to add more powder anyway as it can cause more problems than good. You should always stick to the label on the tin. they ALL contradict each other.

Your having a rough time of time, fingers crossed you get answers on the 23rd.
I refused to put Alex back on the Infitrini cos hes gaining weight each week

Good Luck

 

[Mickeyc]

My Daughter has a heart condition too, they wanted to put her on infatrini but she ended up on SMA high energy, its on prescription only. Our Cardiac liason nurse told us there was not much difference between the two milks, infatrini was only slightly higher calorie than the SMA HE.

Sophie has never had any problems with the SMA high energy. I also feed her EBM for 1 feed a day and we were advised by the dietician to add a small amount of aptimil powder to it to increase the calories. It seems to have done the trick as she is now putting on weight nicely.

I cant see any reason why they would not change your prescription from infatrini to SMA HE

good luck