Alternative to Neocate for 10mth old??

[heatherb]

Hi Everyone,

I am fairly new here, so will give you some background info on my ds. He will 11 months on 6th April, and was an extremely sicky baby from birth. He has been through loads of different tests, (including barium meal, sweat test, urine and bloods) and all have come back clear. The consultant saw that he had some eczema on the backs of his legs so suggested it may be dairy, so I have been on a dairy free diet since November, and he has got better. However, he only really got a lot better when we cut gluten from his diet. We have had the coeliac test, but because we had already cut gluten out, it came back negative anyway. We are going to have to introduce gluten and have the tests done again - dietician said it would take 2-3 weeks of gluten in the diet to show up a positive result.

He has also had RAST tests for dairy, soya and wheat, but they came back as GRADE 0 negative, but I know they are not very reliable either.

The next step will be to re-introduce the foods he is not having now (one at a time, obviously) and see what his reactions will be. This will obviously be done in a controlled environment with medical advice. But, we are not going to be doing this until DS has put a substantial amount of weight on. He is completely off the weight charts for his age (at last weigh in 2 weeks ago he was 15lb 6oz - about 4lb less than average!!), so I have no idea when that will be.

I am trying to wean him off my milk now that he is nearly one, but the dietician has said that the only milk substitute that he can have is Neocate. We are mixing it with rice milk (has rice milk on his breakfast), but he is more or less refusing to take it.

Is there any other infant milk out there that we could try?? I am seeing the dietician again tomorrow, so it would be good if I could go armed with some info.

I have slowly been introducing dairy foods into my diet over the past few weeks, and up to last week it hadn't made a difference. DS has hardly been sick at all since we went dairy/gluten/soya/wheat free. But, we were on holiday last week and it was apparent that the day after I had eaten some icecream he was sick.

Anyway, thanks for any advice.

Heather x

[Copper]

I have not had any experience with this but in an effort to help others I have trawled the net and found this

http://www.paediatricgastroenterologist.co.uk/Milkstable.htm

everything you need to know about alternative milks. Maybe you need to print this put and then show it to the dietician. Others on this site have babies on Pepti but they are younger than your ds. I have had a quick look at the table and Pepti junior is mentioned but I seem to remember that somebody here said that it was no longer available - so maybe Pepti is the new version. I would avoid anything based on soya as he might develop an intolerance to soya. Nothing is easy!

I hope that this helps a little. Let us know how you get on.

It also sounds like he still has a problem with dairy after the ice cream experience.

[matt]

make the dietician do some work. that's what they are there for.

too many of them offer one solution and then expect you to go away and not bother them again.

i have diet probs and a couple of psychological ones as well. so underweight. dieticians offer of help " you need to eat more" well no shite sherlock!!! you worked hat out all on your own did you:lol2:

good luck with the reintroductions. it's the only way to be really sure of the cause. not nice but you'll know for sure that way.

[Jem26]

Hi,

Jemima is on a milk called Pepti by Cow & Gate after she started refusing Neocate.

Good luck.

[tigerlily]

Dietitians - Work= Oxymoron, Matt!!!

I can think of the following alternatives:

PREGESTAMIL *
NUTRAMIGEN
PREJOMIN
PEPTI. *

Yes, the RAST is "iffy" and not reliabe for that age. Worth trying again age 3.


Vanessa.
------------------------------------------------------------------------
*= we tried those successfully.

[tigerlily]

It takes 8 weeks at least for gluten to show in the blood when it comes to testing, probably 12 in a child that young as they only eat minimal amounts of gluten. Go and educate your dietitian, please, she's telling parents the wrong things!!! Eden just had the test and had to be on a"full throttle" gluten diet, i.e a lot of gluten, for 8 weeks. We were told that by a pediatric specialist for allergies.
Also, I know of at least 5 children whose gluten/Celiac Disease test came back negative age 6 months - 3 years and, when redone at age 4 or 5, was 100% positive!!! So, please persevere.

Vanessa.

[rebecca c]

I have come back negative to gluten tests and allergy skin prick tests but I know what things make me ill through years of establishing a base line diet and it doesnt matter to me any more that I dont have medical 'proof'.

When I had the skin patch tests they made me really ill so I had to take them off - the doctors response we cant do anything unless you do it again and we dont believe you!!! Its a ridiculous attitude, dont believe the patient even though its them that is living with it daily.

[matt]

the medical profession are run on facts not feelings now a days. so they won't tkae people at their word and will only respond to positive test results. which is narrow minded and blinkered but unless you find a gp willing to look outside the box....

if it makes you ill don't eat it.

[cnc]

As Matt says, you know your own child best, no one can force you to feed them anything that you don't want them to have, it would be a bit like you wanting to bring your child up as a vegan and people trying to force you to feed them meat. You wouldn't do it!!

[heatherb]

Thank you all for your replies.

The appointment with the dietician went really well. I had Callum weighed first - he has put on 1lb 5oz in just 2.5 weeks, which is excellent for him, and means that he is back on the weight chart (just). This is down to his being on a very strict diet and therefore no longer being as sick.

With regard to the neocate, the dietician said that the other formulas available to him were just as bad tasting so there wasn't much point changing but to persevere with trying to get him to take it. She suggested altering the taste and suggested adding some milkshake syrup to it. We have done this two days in a row now, and has actually had most of the milk we gave him each time - hooray!!

We have an appointment with the consultant on 20th April, so she said she would leave it a while before we see her again - next appointment with her is 12 June. She thinks that the consultant will probably leave more testing for a while, until Callum gains a substantial amount of weight. She did say that if we were going to go down the route of testing for gluten then we would have to be prepared to do it properly - she said around 6 weeks of giving him a large amount of gluten foods - e.g. bread, pasta, cereals, - everyday and then doing a blood test. She said that there was no point putting him through that and the blood test unless it is done properly. I am so glad that she is saying what some of you on here have been saying is what is needed.

I feel so much better now. I just hope that Callum keeps taking the neocate with it's new flavour, and still likes it when I up the amount of neocate to rice milk - he's currently only having 1oz out of 7oz!

Thanks again.

Heather x

[cnc]

Glad you've had some good news :)
Hope it keeps on getting better!!

[Pam]

It sounds like you are moving in the right direction now. I hope the improvements continue.