Toddlers and Neocate?

[midivydale]

Calling all neocate/nutramigen parents. My son is coming up to 14 mnths and is still on Neocate infant formula. He has been under the care of Mr Vademalayan at Kings through our medical insurance. However, as his reflux is now much improved (he is even off meds for a trial period) our insurance does not cover any further appointments.

I have asked his GP to prescribe the follow on milk but they refuse as it has to be authorised by a consultant. Problem is that I cant get to see a consultant as said GP is refusing a referal as reflux symptoms are under control (anyone following?)....

I will of course try to find the funds to go and see him privately without the insurance if I must but in the meantime I was just wondering what other parents of CMPI toddlers do?

Are you still using the infant formula?

[Hollybush]

I don't think I can help you as my son has allergy rather than intolerance and for allergy I'm sure you could push for a referral, as it is good to see the dietician at kings about milk replacement in the diet, and they then stay in the Paediatric clinic system to be monitored long term (skin tests, food challenges etc). I just don't know enough about CMPI to know if you should expect similar or not.

He was supposed to have Nutramigen but never really took it and we used WYSOY instead (bought it ourselves) (with blessing of consultants), which is OK after 6 months I think. Even that he hardly drank, he was breastfed morning and night until about 14/15m and then carried on just not having milk in his life really! We used to give readybrek + wysoy to ensure calcium levels were OK, also alpro yoghurts which have calcium added.

Sorry I can't be of more help

x

[Strawbs]

I would give Babu's deitician a call or his nurse (charlotte) and explain the situation and see what they can do i.e. have them to talk to Babu for you. I have the numbers if you need them. As you know mini strawbs is still on neocate and he is 18m this week, I was discharged from Babu a couple of weeks ago and I got a new batch of neocate on the weekend. x

[midivydale]

Strawbs, is this still the infant version? I am getting concerned about calcium levels...

Yes please could you send me the numbers? Also I owe you a neocate tub :)

[Saffron]

At the very least, the GP can give you a ref to a dietition, since your concern is really about the progression of his diet. I think the practice nurse or HV can also give you a ref for a dietition. Go for whomever you think is most sympathetic. Seeing a private consultant would probably be very expensive (?200-500), though effective, imho. xx

[Strawbs]

Ive sent you a PM hon x

[susyp]

My daughter is nearly 5 and on the next neonate on - I think they are supposed to have a different one after a year. Your gp sounds very unhelpful. Can you see one of the partners at the practice?

Susypx

[newtoedf]

My little boy was on nutramigen until just after his 2nd birthday by which time he'd grown out of his allergy. Ask the HV for a referral as you need to discuss calcium supplementation. Mini-newto was starting to refuse his bottle at the end so I had a long and helpful discussion with the dietician about alternatives (the suggestion was a syrup that you give once a day). V unhelpful GP!

[midivydale]

Thanks everyone. I have managed to get an appointment with my favourite GP at the practice who I know will take me seriously but it is not until the end of May. In the meantime will give him as much leafy greens as I can.

(my Swedish mum suggested herring, doubt that will be succesful).

Have put a call in to the HV as well, hoping to hear back from them too.

SusyP, how was your day back in the area? If you do another one it would be lovely to meet up.

C x

[sbain]

HI,

My 9.5 month old is on Neocate and seems like he will be for the forseeable future anyway. My older son moved onto follow-on milk when he was 6 months old whereas the younger one effectively moved from being breastfed to Neocate at about 6 months. I know that the normal follow-on milk has more iron than infant formula so I'm trying to make sure the little one gets a decent amount of meat in his diet - he's a total carnivore anyway so its not much of a problem. As far as I know that is the only difference between the 6m+ milk and infant formula - Is that right?

He also is on reflux meds - how was the decision made to come off them for you? I hate the idea of medicating him unneccessarily but equally hate the idea of him being in pain from reflux again?

SBain

[midivydale]

Hi SBain,

We decided ourselves to see how he got on without them and touch wood so far so good. He is 14 months now and has been on them since he was 5 weeks. I just thought that he was ready and decided to give it a go. I thought that his symptoms seemed alot better, he doesnt seem at all uncomfortable lying on his back, I cant hear him refluxing, no sickness etc.

Having said that, this morning my partner noticed that his breath was very smelly again (acid) and he could hear him refluxing so if this continues I guess he will have to go back on them. Trial and error....trial and error

[patt1980]

My very nearly 2 year old has CMPI and has 6 monthly checks with the dietician at Kings (I didn't specifically ask the DR for this just happened after being referred there when she was little) just to check if she has grown out of it and height and weight etc. At the last appointment the dietician recommended moving up to the Neocate Active and just faxed the Dr (DMC) a letter to update the prescription so if you can get a referral to the dietician at least that might do. For the calcium levels you could also try using calcium enriched oat milk for cooking and cereal etc as have found it quite good for stuff like fish pie/ lasagne white sauce and pancakes etc.

On a side note the Neocate active is a bit of a faff to prepare as only comes in sachets which make up 300ml which is loads but is really hard to measure out any less and the boxes of sachets take up so much room in the kitchen so I have at times wished we were back on the tins of old stuff!

[midivydale]

Thank you so much for info patt1980, this is very useful. Also interesting to hear about oatmilk - hadnt even thought of that. Any other tips would be gratefully received. Thanks again

[newtoedf]

I've got a copy of a booklet called "milk-free zone" which the dietician gave me about a dairy free diet if that is any help in the meantime? I think you might live quite close to us.

[Inkmaiden]

My daughter also has CMPI and the dietitian at King's recommended calcium enriched Koko milk which is really nice. http://www.kokodairyfree.com/

I use it in all sorts of cooking- also good for milkshakes, smoothies etc.

She also has a multivitamin with iron in it because she refuses to eat meat of any kind. She does eat greens, dried apricots, lentils disguised in sauces and soups and I'm working on quinoa and chickpeas.

[midivydale]

Thank you all so so much - it is clear I need to get to this dietician. I would love to borrow booklet newtoedf, thank you!

[patt1980]

Thought this article I got this morning, in a nutrition newsletter I subscribe to, would be interesting for other CMPI parents as it talks about dairy v plant forms of calcium with some examples.

http://www.thefoodcoach.com.au/articles/?ArticleID=1348&NLID=482&UID=9,171

[midivydale]

Brilliant, Thank you for sharing!

[susyp]

on measuring out neocate active - i divide one sachet into two using the tommee tippee milk containers you can get - half a sachet makes up 120-150ml milk - i mix it up in a baby bottle - my daughter has it on her cereal in the morning.

then we give her calcium enriched oat milk when she gets in from school - she won't drink it straight off (although its fine - i have it on my cereal now!) - but we mix it with that chocolate nesquick you can get - it's full of sugar but also has vitamins and i figure it is more important to get the milk into her than worry about the sugar. Just wanted to get her on to another milk as I am aware that now she is nearly 5 the neocate could be withdrawn - but my argument is currently that we only use one sachet every 2 days so it's not a big deal for the surgery.

She also has broccoli every day.

no idea if that is enough calcium but it is the best we can do at the moment.

we got a neocate cook book but it wasn't really any use.

we also use oatley cream and the milk in cooking for her - just recently - so she has been enjoying a parsley sauce with her fish

keep meaning to give her sardines in a pasta sauce - she might eat it and it would be good for her calcium wise

i try and give her lamb once a week for the iron. she won't eat beans currently which is annoying. and she used to have egg every day in her sandwiches but now will only eat it at weekends if i either force her or cook scrambled eggs with smoked salmon! she will eat ham omlette sometimes. however i have recently worked out i was anaemoic and the iron supplement i take explains how you shouldn't take it with calcium so i'll have to remember not to give her lamb with broccoli - so complicated!

oh and we also make our own bread and sometimes add oatmilk to it also

sorry keep thinking of more things and editing - and she has soya intolerance which i am sure lots of others have - we found she was ok with normal bread but then we tried making her own - and noticed that she wasn't breaking wind as much (which was a lot - esp at the end of the day - which was a bit embarrassing at playdates although other children find it hilarious). Now we only do our own bread - no wind although she still gets burps at night that she needs a bit of help with sometimes at about 10pm - i've never not burped her since she was born!

susypx

[Saffron]

susyp Wrote:

-------------------------------------------------------

...the iron supplement i take explains how you

> shouldn't take it with calcium so i'll have to

> remember not to give her lamb with broccoli - so

> complicated!

>

>

Susyp, I had similar conerns regarding iron vs calcium. I asked a pharmacist about it, then did some reading of my own too. The reason iron supplements say they're contraindicated with calcium is that iron and calcium are both 2x positively charged ions, Fe2+ and Ca2+. So in ionic form, they compete with eachother for uptake, because the absorption in ionic form is dependent on the charge of the molecule. So if your iron is low but your calcium is fine, then absorption of iron is paramount. You wouldn't want calcium to compete with it.

I was concerned after being on longterm iron supplementation (ferrous sulphate) that my calcium levels might be low (esp'y b/c very extended breastfeeding). The GP tested my calcium and vitamin D levels, and they were the mid-low end of normal. GP and pharmacist agreed that if I wanted to take calcium+vitD supplements to boost my levels, then just to leave a 2-4 hour gap between taking calcium vs iron supplements.

However, when it comes to dietary sources of iron and calcium, its a slightly different story. In dietary form, minerals are often bound to other biological molecules, which makes them easier to absorb. It may also mean that they are absorbed in different ways or in different areas of the digestive system. So, my understanding is that there is not really a contraindication for iron- and calcium-containing foods in a standard diet (as long as you're getting a relatively balanced amount of each and not in a deficit of one or the other). You can have lamb and broc at the same time. xx

[susyp]

oh that's good then! thanks saffron!

susypx