The price of NEOCATE - OMG!!!

[misscutandstick]

went to local chemist this afternoon after seeing a thread on here that said it could be bought from the chemist.

she hadnt a clue at all, and had never heard of neocate but she rummaged in an ordering book she had and said that it would be in for 4.30 that afternoon. great! i thought. I asked aobut the flavoured kind (again after someone on here mentioned it) and she looked puzzled and did some more rummaging and went to phone someone.

anyway 10mins later she came back and said that it would be there for 4.30...

I arrived at the chemist at 4.30, and was told "my order had arrived, but had anyone mentioned the cost?" i answered no, and assumed i would be looking at the £20 range...

OMG COULD I HAVE BEEN MORE WRONG!!! For a box of blackcurrant 14 sachets it was.... £68!!! thats a £5 a sachet, how can they charge that much??? (BTW the plain variety in a tin 400g is £29.75!!!) i nearly had a coronary obviously i wasnt prepared for that price and really cant afford it. I explained the problems (milk intolerance, FTT, docs in denial) and she advised going back to doc and basically begging.

WWYD???

i didnt relize was so much dd is on neocate advance but dietion put her on it

we have a Paed, who thinks that 22lb for a 2.6y/o is perfectly fine . doesnt believe DS5 has any food problems because nothing showed up as 'allergic'. We also have a dietician who says that she cant prescribe anything, and that it has to be the paed/GP who has to prescribe ... the GP wont touch us with a bargepole because DS5 has a Paed and doesnt want to toe-tread, and wont do anything without the paed's express permission .

between buck-passing, toe-treading, denial and wait-and-see-ness, we seem to be up a wet thing without the proverbial paddle!

incidentally, its not a lactose problem (i have no test to prove this, just trial and error challenge tests, violent D&V, weight loss, and improvement of symptoms when foodstuffs are removed) i seriously believe its a protein problem - milk, wheat, gluten, soy, egg... so far. cutting down lactose doesnt help , but thankyou for your thoughts .

DD was on nutramigen and neocate when she was a baby,the dietician prescribed it and sent a letter to the GP,think nutramigen is cheaper,but its disgusting,dd wouldnt drink it and we had to hide it in milk and mashed potato.

DD also had RAST tests but it came back as non allergic,she does have intolerance to dairy and wheat and we try not to give her much.

DS5 is very intolerant, but luckily (or not???) he doesnt do hives/rashes or swelling, just violent D&V and goes a bit 'wierd', he has unusual behavioural mannerisms.

So it looks like I should be harrassing the dietician then?

Paed has asked me to write him a letter explaining why i think that Neocate would be so important for DS5... what do you reckon? if this another fob off, or is he making me jump thru hoops for a reason (other than sadism??? )

I have posted on your other thread, some info about pricin.

Nutrimigen is £8.20 for 400gm tin

Neocate £22for 400gm tin

I can give you the prices for any of them as I have a BNF 2008 for children

Someone giving it away here

You are entitled to a second opinion from a different paedeatrician - if you're not happy, then ask to see someone different. Personally, I would make a big deal about the D&V and perhaps not really mention the behavioural stuff as it may undermine your case - not that I don't believe you, but I think some drs would be sceptical.

alibubbles - thanks for the link, i have been in touch, will have to wait and see.

Daisy - the main prob with asking for a second opinion round here is that its a really small village (one can get an appt for any service/therapy within 10 days its that small), and EVERYONE thinks the Paed is practically a god (i think cos hes been round forever - probably delivered most of the village!). so if i diss him and ask for another, i doubt the reception i would get would be any more helpful thats why the GP's wont touch DS5 with a barge-pole for fear of toe-treading on the almighty Doc W.

Incidentally hes getting on a bit and must be ready for retirement, but he said to me last appt "well at my age, theres nothing more i need to learn" - he must have done his training like a zillion years ago! whilst i agree that experience is the key, in medical technology how can there be nothing to learn???

thnks daisy for your advice, im seeing 'the almighty' on friday along with the geneticist, will state my case again with emphasis on the physical problems. Taking along my 'state my case' letter asking for neocate.

Anyone got any more tips how i could approach this?

PS having had a good study of DS5's little red book, he was ON the second line under the middle one whilst breastfeeding, but when he was changed to formula (at 8wks) it plummeted to under the last line, and stayed there since - and he reckons that hes NOT underweight. But he is still in 12mth clothes.

my ds is 4.7yrs and weighed between 21 and 23lbs since he was 2yrs, up till recently was still in 18-24month clothes, he now has a feeding tube and has put on 3lbs in the last month

he couldnt take cows milk at all so was put on pediasure plus as its lactose free, he was fine on one carton a day but when put up to 3 he was violently sick so they thought maybe he was milk protein intolerant but this was never investigated, we ended up switching to fruit based drinks like Enlive plus etc

paed reckoned it was unlikely to be milk protien intolerance as he could handle yoghurts etc but that it might be another ingredient in the pediasure?

treated for reflux with domperidone and ranitidine as well which did make a difference although by that time we'd cut out the pediasure anyway

now on nutrini pepti (which is pre digested-yuk!) thru the tube and he has had no more sickness but has also had a fundoplication which helps!

WOW 3lbs in a month!!!! thats fantastic!

DS5 cant handle cheese or yoghurt either, or 'hidden' milk either.

Not sure that a feeding tube is the route to go just yet . im hoping things will improve without being so drastic but its brilliant that it has worked for you.

Is reflux quite violent? DS's wasnt, it always just kinda 'fell out', dribbled/poured back out constantly. It doesnt anymore - because of the removal of the foodstuffs, but its violent gripey tummy and stomach cramps (thatyou can see on the outside eeewwww and OOWWW) and violent diarrhea when hes eaten something that he shouldnt.

sorry im rubbish at explaining myself!
i wasnt suggesting a feeding tube would be the way to go, just im so chuffed with ds outcome i had to slip it in!

i was more trying to explain my ds similar problems which we never really got to the bottom of.
a dietician is probably the best person to speak to as they can order the stuff for you rather than trying to persuade the docs yourself.

reflux can be anythong from projectile vomiting to lots of "water brash" ie loads of wet bibs.

deffo sounds like some sort of intolerance tho what with the cramps etc

Dont blame you one bit! 3lb in a month is staggering really!!!

We have a dietician... shes next to useless, she gives the impression that she believes what i say. but insists that she cant prescribe anything, or give him anything, and says that it has to be the GP that has the last word.

But she also said that there were no 'additives' that i could put into food which arent milk free... what about duocal then??? so i dont know if she just doesnt have a clue, or is trying to fob me off too. She also insists that all calorie topup drinks are also milk based... when i asked her "well surely DS5 cant be the only person who has lack of calories and is dairy intolerant"? she said: well the only other option is tube feeding and the Paed wont go for that. I dont want him tube feeding, but a little more help wouldnt go amiss!!!

shes talking rubbish! our gp wouldnt give me anything and said it HAD to go through the dietician!

Ours have been good though and we used duocal powder and also maxijul liquid, it comes in 200ml cartons and provides 500 calories, fabulous stuff!
do you think she's maybe trying to steer you away from that kind of stuff as its "empty calories" and has no nutritional value/vitamins/minerals?

shes wrong, not all calorie top up drinks are milk based, we tried 3 and only two of them had milk protien in them but i cant remember the name of the one that didnt, i'll need to have a think about that one!

enlive plus and fortijuce have milk protien
in them but providextra contains NO milk protein.

heres a few links...

product page www.fresenius-kabi.com/internet/kabi/gb/fkintpub.nsf/Content/Product+Features+ProvideXtra+drink

ingredients list www.fresenius-kabi.com/internet/kabi/gb/fkintpub.nsf/AttachmentsByTitle/Providextra+Drink+2005/${FILE} /Providextra+Drink.2005.pdf

this next link refers to adult nutrition but gives guidelines and names of supplements and also mentions the ones we tried

www.telfordpct.nhs.uk/patient_information/Medicine_Management/prescribing_guidelines/Nutritional%20s upport%20of%20adults%20final%20version%20v5%202.pdf

also here is some information on supplements and who makes which ones

www.cancerbackup.org.uk/Resourcessupport/Eatingwell/Thebuilding-updiet/Commercialsupplements

hope this helps!

sorry that second link might not work but if you click on downloads at the top of the product page then open the data sheet it gives you the ingredients lists for the various flavours, i suggest printing off a copy for your dietician

awww thanks glittery!

on the calories front (WRT dietitician), i really dont know, is she useless or just unhelpful? i think arming myself with info and facing might prove a good move (sounds like a dance ) after all, what have i got to lose? shes not exactly being helpful anyway!

oh poo, providextra has a soy base

eh? providextra says:

DESCRIPTION

A flavoured, non-milk liquid protein supplement (containing soya and pea protein hydrolysates), fortified with vitamins, minerals and trace elements. Fat free.

and then says:

Juice-style oral nutritional supplement.

High energy
Easily absorbed hydrolysed vegetable protein
Milk and soya protein free
Fat free
Average daily requirements of all essential vitamins and trace elements contained in 400 ml
Seven sweet (without fibre) and one savoury flavour (with fibre)

so whats going on? they both look like the same packaging perhaps im being useless...

many thanks will arm myself and face the dietician!

Lots of these 'drinks' and 'milks' have use with caution in under threes on the labels and some say caustion with under 5's

yes, i noticed that too.

cant help you with the soya bit im afraid....that is a bit weird?

on the age thing, ds was 2.5yrs when he started on these drinks so i think it must be ok as long as its prescribed by a dietician/doc?