Advice Needed

[LotusMum]

Hi, Ive contacted you before about this situation Im in, Im not sure if you remember me, but to remind you, my daughter has had trouble feeding from birth. She vomits an awful lot and does not feed much. She has aprox 90ml each bottle and occasionaly 150ml but unfortunatly vomits a lot back. She is seeing an Ocupational therapist as well as a Speech Pathologist for sucking problems. She is also very sensitive to loud noises and gets distracted very easily. She has all the classic symptoms of reflux without the pain....yet.
My daughter has now been put on Losec for the vomiting as although she doesnt appear to be in pain, she is not feeding any better. Granted it was only just over a week ago.
Unfortunatly now she is also not gaining weight. She has never really gained much, but this week it was only 20grams. The CHNs have told me to put Farex in her bottle twice a day as she wont take the AR formulas and if this doesnt work, to make up a blanc mange of cornflour, formula, sugar and vanilla essence.
My fears is that my daughter is only 3 months old, just, and shouldnt really be on solids at this stage and certainly not things with sugar and flavouring in them.
I am very worried about this weight gain issue as she is so young. Is there something more I should or can do about this or should I be pushing her problems through to a specialist through a hospital? She isnt skinny, as luckily she born a healthy size, 4110kg.
Any advice would be appreciated as I really dont want to do something that could cause problems with her while I wait for dr appointments or so on.

[RISA]

Hi Suzie,

Yes, I remember you, and I am sorry to hear she is still having problems feeding. That’s a hard one with the Losec, as it may not make any difference to vomiting, but can control pain- but perhaps discomfort is part of the reason why she doesn’t feed well. Sounds like that's what they must be wondering. I really hope you get that easy answer, and the Losec does make a difference for her. It can take a while to take effect and it may also depend on the dose as well, with some babies needing quite high doses to make any difference.

Goodness, I can understand why you are concerned about offering your daughter sugar and flavourings, especially at such a young age. It is really important that you do listen to your instincts (I believe a mother’s instincts are there for a reason and are definitely worth listening to). Hopefully the Farex in the bottle will be the answer, but if not, and you do make up a blancmange or custard, perhaps you can try thickening it with just the cornflour first? Perhaps that would work, and may be worth trying, considering you aren’t comfortable with adding anything else? Did the CHN explain why she thought it would be helpful adding sugar and vanilla? Perhaps she had some particular reason for suggesting it that we don't know about?
Thickening feeds can be quite successful for bubs who vomit, so it may also be the help she needs.

Given your concerns, and the fact that she has feeding issues, and weight problems, it seems reasonable to want to talk to a specialist about things. I would think you have every right. Do they know why she has these feeding problems, apart from perhaps being reflux related? Do they have any answers about that? As I said before, I think it is important a mum follows her instincts and your instincts are telling you that you need to take this further, so I hope you are able to.

I also hope the Losec and or the thickened feeds work, and she starts to put on some weight, but keep doing what you are doing so well, and that is taking care of your daughter. Don’t forget to take care of yourself as well!!

Glenda

[LotusMum]

Thanks Glenda, I have since been to the GP again. This time she reakons to try Soy formula and Infant Gavascon in conjunction with the Losec. I am concerned about Soy Milk as I am sure its not as good to feed a baby from a plant rather than another mammal at least. Would you have any recommendations?
She agrees with me though about not giving solids to her at this stage as she is so young, and definatly not that blanc mange. Its crazy to give a baby with gut issues more things to try and digest, especially sweeteners and flavourings.
Any suggestions on formulas would be a help. Im not sure why she said soy and not a lactose free formula.

[RISA]

Hi Suzie,
Glad the gp agreed with you about the blanc mange. It just sounded a bit odd, didn't it!!

I think it's best for you to discuss your concerns with the doctor regarding soy formula. I have seen some babies absolutely thrive on it, but you have legitimate concerns, and you should discuss them with your dr. She sounds like she is very up to date with reflux treatments, so she may be able to help you there. As i've said before as well, it is really important that you trust your instincts, and if you remain uncomfortable after talking to her about giving soy, then there are other formulas that are available you could try.

I imagine that she has suggested soy as an alternative to cows milk, because some research has shown that about 40% of reflux babies are intolerant to cows milk protein. Some of these babies do well on soy, but some are also intolerant on this as well. Apparently the proteins are quite similar. As with other reflux treatments, there is no guarantees it will help. It all depends on whether she has a cows milk intolerance, and whether or not she has a soy intolerance! If both are an issue, then there are more specialised formulas that are available by prescription. These are formulas such as Pepti Jnr, Elecare or Neocate. IF soy doesnt help, or if you decide not to use it, then your doctor may prescribe these for you.

Cows milk protein intolerance is very different to lactose intolerance, and the lactose intolerance is much more unlikely (unless it runs in the family I guess). That would be why she has suggested trialling soy.

IF you do decide to go ahead with soy, keep a very close eye on her bowels. I'm not totally sure, but I have heard that Infant Gaviscon shouldn't be mixed with soy, and I think it may be because of the bad constipation it can cause. I honestly don't know if that's an issue or not though, but please keep that in mind if you do use both together.

At some time she may choose to try increasing the Losec as well, though she may not feel comfortable doing that, and would prefer to refer you onto a specialist for that.

I hope that information helps once again, and I wish you the best as you try to figure out whether it is right for your family or not. Take care, and please look after yourself too

Glenda

[LotusMum]

Im sorry to keep posting here. I just have one last question.
I tried the soy for two days after I realised she had stopped vomiting. Unfortunatly on the second day she started agian so I stopped that as I was uncomfortable using it in the first place. I have since started an antireflux hypoallergenic formula (just a normal Karicare Ha AR formula) and she has not thrown up since (apart from a little possetting, but definatly not unhappy about that!!!).
My question is, could my baby not really be a refluxer and it be something else instead or is it likely that she just grew out of it very quickly coincidentally at the same time as I tried a new formula? I am curious about milk soy protein intollerences as maybe this could be the case with Josie and I have heard that these two things can be related or misdiagnosed as each other. Do you think that I should continue trying to find out whats going on or just continue on as we are? Im kinda lost at the moment as I dont know what to think any more.
Thanks agian for your continued support. Its very frustrating trying to figure out whats going on and what to do about it.

[RISA]

Hi,
No worries about posting- having been through the trauma of having reflux children, I am happy to help if I can. (it helps make what we went through a positive out of something bad)

It is confusing, trying to work it all out, so don't feel bad for that. There seems to be never ending questions that go through your mind. That's also very normal!

From the sounds of it, the formula change has been really good for her, AND/OR the Losec has finally kicked in; so my figuring is- do what works!! for the moment, it doesn't really matter why it is working, it just matters that it is, so take the opportunity to enjoy your daughter perhaps?

The soy may have been a problem, but it was quite possibly too early to tell, and she could have perhaps had a bad day (coincidentally). To really make sure, you need to try it again to check (though don't be in any hurry to make any changes).

Also, even though you are using a HA formula it isn't likely to be a milk soy protein intolerance, i don't think. HA formulas don't seem to work if the child has already developed an allergy, or been exposed to potential allergens such as cows milk. If there was a soy intolerance as you suspect, then swapping to that formula wouldn't have helped after you had used soy and she had reacted. (that's what I think anyway)

I know it is confusing, but hopefully you have now found the answers that you need to help her feel more comfortable! If for some reason it changes again, then you can continue looking for different answers, but for now enjoy it, for as long as you can.

Hope that helps
Glenda