intolerant of neocate LCP?

Hi Fiona

Could the diarrhoea be a sign of her flaring up? Does she normally get diarrhoea when she flares? Does she have stomach pain with the diarrhoea? Do you think she may have lost some weight?

If she may be flaring then you could call your Paediatrician? Is your little girl seen at G.O.S.H? Also, Neocate have an FAQ on their site if it helps. We were told that Neocate is hypoallergenic but i have read other posts on here saying that Neocate didn't agree with their child and so they had it changed to Elemental028 so maybe you can be intolerant to it?

We are often puzzled by our 4 year olds bowels - he can have constipation for a few days and then diarrhoea for the next few and we often don't know why it's changed as his diet is very limited and doesn't change much. It's difficult to manage.

I hope things settle down soon,

Kitty

thanks Kitty,

saw our local paediatrician who has zero experience of this!  and she has lost a little weight, the diarrohea has stopped now so I just dont know, we handed a sample in and it was normal so no sign of bugs etc!

To go back on monday and be weighed again, if shes lost any more weight he wants her to be admitted to Yorkhill in Glasgow where we see a gastroenterologist for more tests.

I hoping so much se puts some weight on!  will keep elemental028 in mind to mention to them

thanks so much

fx

Hiya

Sorry to hear she's lost weight and may end up admitted to Yorkhill. Such a worry for you. It's great to hear the diarrhoea has stopped - do you think it could have been a flare up then? 

We have struggled locally too - we quite often get turned away from our GP's as they say they don't know anything about EGID so can't help us. Our past local consultant couldn't help much either. We have just got a new one and see her in February so I am hoping she is more knowledgeable about the condition.

We are struggling a bit in our house too with flare ups and other strange symptoms - our eldest has gone back into an insomnia phase (this has happened before) and wakes lots with pain in hands and feet. Our youngest had diarrhoea again yesterday and stomach pain so may be starting another flare and we haven't long got over the last one. This has been a bad winter for us so far - i'm sure it's the same for everyone with EGID.

Anyway, I hope you have a hospital free and diarrhoea free Christmas!!!

Take care, Kitty

Hi Fiona, 

I saw your post.  Our son is 2 and is also on Neocate LCP, we too see the same doctor as Kitty at Great Ormond Street and he has frequently asked if we think Neocate is causing problems.  Apparently they changed it to LCP about a year and a half ago and this new recipe is not as good as the old one and many children have been unable to tolerate this 'hypoallergenic' formula.  He said there are alternatives, including having them blend one in the pharmacy for our son individually.  So don't be fooled into thinking this is totally fine, as it could easily be that.

 We tried Neocate Active and our son was terrible on that. It is so difficult as you will be the only one who has a gut feeling about what the problem is in many cases.  Luckily our doctor listens carefully to us and works with what we tell him. 

I hope your daughter settles down soon and you get some help.

Paula x

Hi Paula

I didn't know about this change in the Neocate affecting childrens guts. I'm interested because our son has complained of more stomach pain this year (although this may be because his language has improved) and he drinks a pint of the Neocate every day! I wonder if it's connected? I will definitely ask Dr Shah about this when we go back in February.

Thanks!

Kitty

My son was on neocate and then neocate lcp until just over a year ago.  It always caused him constipation along with his existing gut disease.  I know from a dietitian friend that quite a few children have had problems going over to the lcp.

Neocate also do Active and Advance for older children but we did not get on with either due to the increase in osmolality.

Elemental 028 is seeming to be favoured at the moment.  It shouldn't be used in under ones and with caution in the under 5s but we did try it when my son was 3 and again he didn't get on with it but that is more to do with his gut disease.

With regards to "making up" a feed.  It is called modular feeding and it is where each component part of the feed, ie carbs, protein and fats are added in separately to custom make something that suits the individual child.  They usually use something called amino acid mix (not licencsed so a special order from the gp and very exspensive) and then choose something like maxijul or vitajoul as the carb component.  The choice of fat would be liquigen or calogen, usually a bit of both as one is a long chain fat the other medium. 

I know this as we have tried it when they thought my son had problems digesting long chain fats which is the main fat component of neocate lcp.  I had a mixing bowl and had to measure out very exact amounts (to the 1g) of each thing and also add in potassium and sodium chloride solutions. Everything had to be very sterile etc.  It isn't used very widely partly due to expense and partly for the hassle of making it up and the risks of making ti wrong.  We were told that they usually try and find something already on the market similar to what they have found to work best but will somethings added.  So elemental 028 for example with some extra carbs.

For us the modular feed didn't work as my son was already in intestinal failure and is now fed via his veins but I do know of others that it has worked well for.

So if neocate lcp is a problem there are other things to try but the dietitians at gosh along side your gastroenterologist will be able to look at the picture as a whole and deicde what to do.

thanks everyone, things have settled down a bit no more diarrhea and she has gained weighed so thank goodness no more hospitals till next week!

Hi Helen

This post was really helpful thank you!! I will talk to Great Ormond Street about this in March as I wonder if changing from Neocate LCP to Elemental 028 may be worth a try to see if it helps his gut symptoms and pain? I wonder if it tastes horrible though? He's been on Neocate for over 3 years now so I don't know how easy it would be to change him?

Thanks again

Kitty 

Hi Kitty

The Elemental 028 comes in powder or liquid form.  I think the powder does plain, banana and citrus or orange flavours and the liquid grapefruit, orange and pineapple and summerfruits.

It may well be worth seeing if he will drink any of them BUT I expect he only drinks the neocate now as he has had it for so long and something new may be a struggle.  We couldn't get Ben to try the blackcurrant neocate - I benefit of having a tube!

I think they will obviously look at his symptoms and the fact that they are having others report problems with the neocate lcp but also consider his weight and the risks to that of changing, him not getting on with it and possible reluctance to then go back to neocate.  The other thing is them to consider looking at why is symptoms are not so could and whether changing his meds rather than the feed is the way to go.

The fact that he happily drinks the neocate is such a bonus from a nutrition and calorie point of view and as an elemental formula it shouldn't be making his symptoms significantly worse.  I would think a complete review of meds and diet is needed.

Lots of love

Helen xxxxxxxxxxx

Hi Helen

That's a good point, i definately wouldn't want him to then be put off the neocate as he does like drinking it. It's the only nutrition he'll take willingly so I don't want to mess that up! I will keep the diary I'm doing and show it to Dr Shah and see what they think. I may call the Dietician too in a few weeks as their nutrition hasn't been reviewed for a while.

Are Ben and Izzy excited about Xmas? How are their tummies this week?

Thanks and have a lovely Xmas,

Kitty

Hi Kitty, I am Lore. Can you tell me your experience in GOSH? I mean the treatment for you baby.

My little Andrea 17 months old probably has EGID (EG and EC), also she is allergic to corn, soy, rice, wheat and milk. My mayor problem has been that she is intolerance to Neocate, here in Mexico there are Neocate 0-12 months, Neocate LCP and Neocate Advance. I will try whith all versions, the beter for my girl is Neocate 0-12 month but definitely she is not tolerate because she has abdominal pain, gases, constipation - diahrrea, etc.

What have your baby?? I hope in this time your family don´t have problems with this kind of problems

Say Hello from Mexico

Lore

Hi Helen

I just read your post and it´s so interesting, many doctors don´t have idea about intolerance Neocate, they think it´s imposible. Here in Mexico Neocate don´t have many time. Through blogs of parents I have learn so much.

Sorry about your son was in fed via vein, I hope he is better, How is he feeding now??

In GOSH use the modular feeding?? I would like contact with the Hospital, do you think they see international patients??

Reagards and tank you for all information

Lore

Hi Lorena,

Our experience of Great Ormond Street has been a very positive one. I think they do take international private patients - I've found you a link that explains it: http://www.gosh.nhs.uk/hipc/get_referred.html

Sorry to hear Andrea is thought to have EGID and that she is still very symptomatic. Is she taking any medications? Is she on a very restricted diet?

My boys are both on Neocate and they aren't symptom free but are much better than they were. Our youngest suits the infant Neocate too and we are trialling him with small amounts of the Neocate Active. Our older son tolerates the Neocate Advance well.

Do you think its the Neocate she can't tolerate or that her gut inflammation isn't under control yet and thats why she's unwell?

Kitty

Hi Lore,

Our child goes to Great Ormond Street also and we have used the Private and international patients wing, which is great.  it is called the Octav Botnar wing and is very good indeed.  Our consultant the re is Dr Neil Shah who is amazing  and I know is the same doctor that Kitty's children see too.  He really is the best, so I would totally recommend him as he is the leading consultant in Europe on this kind of thing.  I can give you his secretary's number if you need it too, although I am sure reception will be able to put you through.

My youngest child is allergic to all food apart from potato- literally everything else. He is okay on Neocate infant formula but couldn't tolerate the advance or active.   It was Dr Shah who told me about children reacting to neocate.  He is so kind too, after having so many doctors before him I can't recommend him enough.

hope you get some help,

Paula

Hi Paula

I just read your post. Sorry to hear he can only have potato. that must be a nightmare for you! how old is he now? have they got a plan of how to help him tolerate more foods? 

Kitty

xxx 

Hi Kitty,

Yes it has been very hard.   He is now 3 and the last year or so has been very much about stabilising him, which Dr Shah has done an excellent job.  Everything we have tried so far he has reacted to and ends up hospitalised.  I am hoping now though that because he is older he will be able to communicate to us when he feels ill and when it hurts, so will make trying things easier to so extent, however he becomes obsessed with new foods as his diet is so limited.  He basically survives on Neocate alone and since he can't eat or drink enough to keep him going, wakes every night at least once or twice for neocate as he is hungry.  It is amazing though what you get used to... to us it is just him.  My other two children are amazing and treat him completely normally and make sure no-one ever gives him anything.   We are going to start trying him with some more foods over the coming weeks, before winter bugs start and he ends up on steroids for the whole winter.   I am just glad we have Dr Shah as I don't know what we would do without him!

Paula

Hi Paula

I really sympathise with the waking from hunger at night. Our youngest only stopped night feeding on Neocate earlier this year - he was 4! We got used to it too. they still night wake but its just become part of life for us.  good luck trying the new foods - let us know how it goes. We are very grateful for Dr S too, we have come along way in the 3 years we've been seeing him.

Kitty

Hi Kitty

Thank you so much for your information. The last week I sent an email to the link that you sent me, they referred to email Dr Shah´s secretary. Dr Shah request the Andrea´s labs tests and biopsies, so I´m collecting all (and traslating to english). This week Andrea had a new endoscopy and colonoscopy, I want to wait this last results to send Dr Shah, the Hospital here will give them on Novembre 8 :(

Do you live near the Great Ormond Street Hospital? Maybe you know some "hostal", an ECONOMIC hotel or church near to the GOSH where my little Andy and I could arrive?? If Doctor Shah give an appointment I will try to go, I don´t know ...

Andrea was taking Mopral (omeprazole pill) since May to September 2011, and she has been taken Gastrocrom (Cromolyn Sodium oral) since July 2001, I think this has helped her so much, but even with this she can´t tolerate Neocate anymore.

Since 5 months ago she is ONLY has taken Neocate, I lately removed Mopral thinking it could has traces of corn (she is allergy to corn), but she doesn´t improved

When she started to Neocate (February 2011) she improved, but after 3 months she started again with problems, because that her doctor told me only give her Neocate, but there was not improved, in new Children Hospital here the doctors think is some autoinmune, they said its imposible to reacting to neocate, they proposed a new biopsy..

Actualy she still take Neocate, but a little, she has pain, constipation, pain whe she make po, the po is liquid with mocus, beside that she is hungry and ungry :(

What do you think? It´s enough time with elemental formula, isn´t it??

Kitty, thank you again for listening, hugs for you and your boys

Lore

PD. Sorry my english is not so good

Hi Paula

Thank you for you post, I am finding help to my little Andrea, as said Kitty the last week trough Dr Shah´secreatry email they request Andrea´s labs tests and biopsies, so I´m collecting all

How is the International Patient Wing? How is the process with international patients??

Don´t you live near to GOSH? How many expensive it could be? The economic issue it is a big problem for me :(

Sorry that your little boy have only potato, this is no fair, I hope he get better, Dr Shah is thinking gave him steroids? Why?? It´s not enough with Elemental Formula??

In Mexico there isn´t Neocate Infant, is like more basic?? Maybe Andrea could tolerate it

The last doctors of Andy think this is some autoinmune, they proposed a new biopsies and labs studys, and they are thinking to gave her steroids

All doctos that I have seen think it´s imposible reacting to Neocate :(  , for the momento the only Dr that I have heard think about it is Dr Shah, and I found in this site

Well, really thank you for all

Lore

PD. Sorry but my english it´s no so good

Hiya

I dont' live in London I'm afraid so I can't advice on places to stay. Sorry.

Yes Neocate LCP is a very basic elemental formula and our son has been on it for 5 years.

I don't have any medical qualifications so i can't advise on the steroids but if it reassures you, lots of children with EGID have them and my youngest son has had them when he was flaring badly. I think they reduce the inflammation. maybe you could ask your consultant to explain why he wants to use them?

Good luck,

Kitty

Hi Lore,

It sounds like you are having a very difficult time.  Your daughter's reactions and symptoms sounds very similar to my son's before we saw Dr Shah.  He has managed to get my son onto a good balance of medication which has stabilised him a lot, although he still is unable to eat.  We are going to try him on new foods soon again so hopefully we will find something this time.

There is accomodation available at GOSH, in a building next door that they own.  I am not sure if this is only available to overnight patients or not, but they have an accomodation department who will be able to help you and if not will tell you where you can stay as there are hotels nearby which offer a discount to parents of children at GOSH.

Here is the website for their details.  They are very helpful.

http://www.gosh.nhs.uk/gosh_families/information_sheets/accommodation/accommodation_families.pdf

My son's condition is an autoimune one and Dr Shah has been able to help us.  I hope he is able to help you too.

We have used steroids many, many times and our son was on them throughout the whole of last winter, for at least 8months.  They are used a lot at GOSH and they certainly help.

Hope you get some help soon,

Paula x