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 (makes up 400mls each) it was.... £68!!! 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???

Some here

The2008 BNF states a price for Neocate Active of 14 x 63 gm (250ml with water) sachets, natural or blackcurrant as £49.12 so they have marked it up a bit.

Ask them to check the BNF ( British national Formulary, the pharmacist's bible) price.

I used to dispense a long long time ago!

You can get it on prescription you just need to find a gp that will do it.

GP's wont prescribe as DS5 has a paed, Paed wont prescribe because he thinks that 22lb is fine for a 2.6y child , dietician wont prescribe as she says she cant and that GP should do it... ARGGGHH!

umm...... cat me- thats all i'm going to say i may be able to help!!

if your child is 2.6 he ought to be able to manage ok without an infant formula tbh.

what is his diet like? bear in mind that some children are just small!

there should be other things you can do to get moire calories into him, despite his milk intolerance

Thisisyesterday - hes also intolerant to wheat/gluten, soy, eggs, dairy and a few others too but they are the main ones. He exhibits autistic symptoms, is non-verbal, and is looking like he has fragile X, hence the geneticist on friday. Has the tiniest of appetites, and has very little muscle-tone, is also not particularly active and gets tired easily.

I really do welcome any further thoughts.

please. XXX

thanks wontbe, have CAT'd.

but more than happy to stick addy:

misscutandstick at yahoo dot co dot uk.

I don't think 22lb at 2.6 years old is underweight. A little one I have is only 20lb but that is the child's build.

i thik these chikd growth charts in the 'red child record book' make aprents obsessed with growth and weight.

P.S. I'm not saying you are, you know your child, but having minded 50+ toddlers, I have seen a huge extreme of weight range.

misscut, has he always been small? or has he lost weight/gained really slowly?

that's what would concern me tbh. if he has always been small I wouldn't be worried about his current weight iyswim?

we're basically vegan here, but there are things you can do to get extra fat into the diet, plenty of olive oil, nuts, avocados etc and there's always kids vits if necessary too.

it might be worth starting another thread on here asking for advice on improving diet, bearing in mind his allergies and autistic symptoms... people may have some suggestions?

this isn't to say you shouldn't persist with getting a prescrioption for the neocate if you feel it rteally is necessary. after all, it's worth it even if it just makes you feel you're doing all you can iyswim?

yes, i see what you mean yesterday.

DS5 was 7lb 5oz at birth - no problems in either pregnancy or labour. Breastfed for 8wks - sicky, but put on weight OK, followed the line beautifully (i know i have not to be obsessed with the red book) but it was to illustrate that his weight was doing fine... until changing to formula.

from then it got worse, he stopped putting weight on, he was very sick, had constant stinky diarrhea, tummy aches and lots of bloaty wind. At 10wks he lost a full pound in weight.

Changing formula's resulted in: C&G and Aptamil: no better, C&G plus: even worse, C&G soya: no better at all, C&G comfort: slightly better but not much. By 10mths he refused bottles altogether.

On weaning at 7mths we switched to goat milk, and it improved things very slightly, but not much. It had become apparent that a few things were making him worse and had to be avoided altogether: milk, bananas, egg, his weight gain had dropped to nothing.

then we took milk and all milk products out of his diet - and OMG the change!!! he was more alert, happy, had more energy, his alternating diarrhea and constipation calmed considerably, and he was even starting to respond to his name too (18mths). We were then advised by the dietician to omit gluten/wheat too. we swapped dairy for soy. by this point we were just left with bouts of diarrhea.

The days following the removal of gluten were horrendous - headbanging, face clawing, screaming, nipping himself, it took a week for him to calm down. I took this to mean that if he was having a bad reaction coming off gluten, then perhaps it was a good idea he wasnt having it. Again the diarrhea calmed a little. but something was still upetting his tum.

A couple of months ago we omitted soy from his diet and heypresto the diarrhea has now almost gone. and TMI 3wks ago he had his first BROWN poo instead of stinky yellow/green poo. However it is still quite mucousy (sorry TMI) and has occasional bouts of diarrhea and stomach cramps when hes eaten something he shouldnt.

sorry to have rambled, but i wanted you to understand 'where we are' with his diet, and his problems. Thanks for staying with me so on this thread, it is appreciated THANKS

oh bless him! sounds like you've had a right old time of it. we're "lucky" here that it's only eggs and milk we need to avoid. I still worry about calcium and iron and all that kind of stuff though.

am actually on the neocate site atm to see what actually goes into it and whether it would be possible to get most of it from other sources. unfortuantely I am no expert in this lol
the neocate advance seems to be mainly glucoise syrup and various oil, and then all the vits and minerals.

dont know where they get off charging that much for it! taking advantage of people with allergies I guess.

sorry, i am prob not much help. I hope someone who has been in more of a similar situation can give you better advice

i appreciate that you have spent so much of your time on my post, thank you. i guess your post brings us full circle how can they charge that much???? LOL

Poor little fella, he's had a rough time, hope you get sorted out soon.

allergies like wheat dairy eggs can be caused by eating dairy and wheat which can induce allergy induced autism, my son has this but he is getting better, we removed all corn, wheat and dairy products gave fish oils and super nu therea multii vitamins and are now on a dan biomedical protocol. see www.treating autism.com the uk site or american where they started the dan at www.autism.com
my son used to be in a bubble, avoid eye contact scream at nothing, lie screaming in public shops non verbal slight behaviour issues, now he's out of the bubble, congitively understand three word phrases, walks properly, sits when asked, play with peers and toys which he ignored before.. alergies casn slowly go with removal of the certain food which needs to be tested, naet.co.uk also can releive or get rid of allergies with acupuncture and osteopathy has really helped my son with cognitive and behaviour....you need to remove the cause not the sympton of allergies....the nutri centre is a library of information on allergies, log on to www.nutricentre.com

Alibubbles thanks for your well wishes.

Pushkar,many thanks for your advice. How old is your son? we have DS5 on multi-vits and omega3 too, not sure its doing anything, but im sure it cant hurt.

although he has symptoms of Autism, i have come to the conclusion that its not a clear cut case... why? well he can mimic actions quite well, doesnt have the need for 'sameness', and other symptoms not consist with classic autism. but DOES have lots of ASD symptoms. However he: has poor muscle tone, has GDD, is non-verbal, poor understanding, has a 'gangliness' about him, large low-set ears, deep chin, 'leans' an awful lot, and other symptoms pointing to Fragile X Syndrome. Lots of people with Fragile X have autistic symptoms, so im not sure its an allergy induced autism. But wether or not these intolerances are part of his genetic makeup (IE the inability to process these proteins properly) or wether they are a separate issue altogether, i just dont know.

On my mothers side there is an abundance of allergies and intolerances with most of them being asthmatic, coeliac, etc. Theres also a strong tendency of GDD and intellect problems too, amongst the male children.

I dont know whats going on, im just trying to fix the most obvious problems first.