help needed please dd birth since they thought was lactose intolerance !

[trace2]

well like i said as she had very loose stools since birth at 6 months they put her on soya and them neocate, shes now two and tube fed still on neocate active anyway dd still had up till last weak very looses stools and we was told to try little milk products into her diet, well every time we do even the tiny bits she gets where she carnt go to toilet shes is constipated and i mean constipated! could it be her body adjusting or means she still carnt take it? her nurse is asking if she can have skin tests now but we know there's a long wait. do i stop giving her and keep trying?

[trace2]

forgot to say mostly nil by mouth all goes through her micky button

[trace2]

please!!!

[AcademicMum]

Lactose intolerance is different from cows milk protein allergy (CMPA). CMPA is an immune reaction in which the body recognises the proteins in the milk as harmful and therefore trys to protect the body against them by e.g. closing down the airways etc. CMPA is potentially life-threatening. Lactose intolerance is an inability to break down the sugar in milk (milk sugar is lactose) because the enzyme required to do this (called lactase is either missing or does not work properly.

The only thing is that the enzyme lactase works on a supply and demand basis. If someone is not given lactose for a long time they loose the ability to break it down. This can be a problem with these milk-free formulas such as soya, nutramigen or neocate.

I would therefore suggest that first of all if your daughter has a cows milk allergy, you do not test this yourself, but get a proper test arranged at the hospital under controlled conditions. If she is no longer allergic to cows milk she may have developed a secondary lactose intolerance. This can be helped by giving lactase tablets prior to eating food containing lactose.

If you are not getting the medical help you need for this I'd personally go and stamp my feet and create a fuss. BTW if the only food your daughter is getting is Neocate Active, you may want to ask for a change of prescription to Neocate Advance which is nutritionally complete. Active is not.

I hope that helps!

[VelvetCushions]

I second what Academic mum has said. You need some expert help and definitely need tests.

What milk products did you try? Did you try any goats milk products? Sometimes children find it easier to tolerate goats milk.
If it is suggested that you try some dairy, then try some cooked goats milk first like in a porridge or just boiled and then cooled then mixed with something.

[trace2]

thank you for getting back to me, we have a nurse coming every two weeks to our house due to her problems and heath, we have a dietion to who put chloe on neocate, then they put her neocate advance then they changed to neocate active as it can be made up thicker shes very under weight only 20lb at two years 2 months old. we are only doing what we been told and try little and often with dairy but she dont eat much by mouth and it as to be mush s she can not tolerate lumps, we have told them that now she can not poo after any kind of dairy even if its a tiny bit of butter in the spuds! and iknow she needs testing again as its such i long time since she was tested, her nurse says they going to do prick tests but last time was blood tests.

her skin is getting bad again to i just know its from the dairy so i have stopped it untill we go and see our pead in sept.

[AcademicMum]

you poor thing, its awful when you see lo's struggling isn't it? My ds2 is also quite underweight, so I sympathise with that one.

Either skin prick tests or blood tests can be used for allergies. Skin prick gives faster results but blood test gives a better idea of how likely a reaction is (if she would come into contact with dairy).

As i say though, i do wonder whether the dairy allergy (detected from skin prick or blood) has now become lactose intolerance due to a lack of lactose in her diet for a long time. Ironically they test this from a poo sample and she must be having lactose in order to test for intolerance. It could be a bit of a problem if she's bunged up!

FWIW I think you're doing the right thing to stop with dairy and wait for the paed's opinion - at least sept is not so far away now, or can't you phone your paed and get an earlier appointment?

Good luck!

[trace2]

we have had to take dd to gp still not been for a poo they gave her a suposarty and iof not gone today need to tke her back i have rang her nurse and told her we need checking, shes crying holding it back wont move. my poor baby!