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Allergies and intolerances

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Original poster

10mth old screaming & straining ALL day....what to do???

78 replies

simpsonsChristmasSpecial · 05/12/2008 20:48

My 10mth old DD has been diagnosed with a milk intolerance and she has been prescribed wysoy which she has been on for a couple of weeks.

At first she seemed ok, then a few days ago I gave her a soya yogurt which set her off screaming/straining etc and ever since then seems unable to tolerate her soya milk.

We referred to the hospital a few mths ago prescribed soya milk in the first place and the earliest I can get another appt is Jan

I have a GP appt on Wed for her, again the earliest I could get

What do I do in the meantime? DD was so bad this evening I had to help her poo with tissues etc (sorry TMI)Once she has pooed she is quite happy.

Do I continue with soya milk (screaming will do my head in and she must be in pain) till I see someone

Or do I put her back on "normal" FF which she was intolerant to but nowhere near as bad as this

Or has anyone got any other ideas?

Thanks so much, just hate seeing DD in pain

OP posts:

Original poster

simpsonsChristmasSpecial · 10/12/2008 18:16

Well just got back from GP and things could have gone better to say the least...

She refused point blank to prescribe any new milk for DD and said it must come from the hospital

However she is writing a strongly worded leeter to pead and demanding that I am seen before Xmas. Also saying I would prefer to be seen by someone different to last time.

TBH am cross but DD is not as bad on cow & gate so at least is not screaming in pain etc...just has REALLY sore bum (and very runny poo) which I have been given (yet more) cream for.

OP posts:

sarsums · 10/12/2008 20:56

Sorry to hear things didn't go so well with your GP (she definately can prescribe Neocate or Nutramigen, although she may not feel confident in 'over ruling' the paediatrician). It's good though that your dd is not in so much pain anymore on the standard formula, but she must have a very sore bum. The creams you are being given are treating the symptom, not the cause.
It seems crazy to me than she has had this diagnosis of milk allergy, yet she is being left untreated. As I said in a previous post, if she is allergic to milk there was always a high chance hat she would also react to soya.
If you would like me to arrange a sample of Neocate for you then please drop me an email. It will certainly do absolutely no harm to try your dd on it. If she responds positvely to it, then you can go to your next appointment with the paediatrician with the proof that she needs this formula.

Original poster

simpsonsChristmasSpecial · 10/12/2008 21:05

Sarsums - have emailed you thanks so much!!

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LilySwalLoosHerTurkeyBaster · 10/12/2008 21:11

Simpson i can't believe that your gp won't prescribe you what dd needs.
Hope Sarsums can help and for your poor dd.

noiamnot · 10/12/2008 21:15

ah welcome to the wonderful world of the unhelpful gp\pediatrician when dealing with the allergic child.

do you have money? can you pay for a private consult with an pediatric allergist?

Ewe · 10/12/2008 21:27

Is SMA Lactose Free soya based? You can buy that otc in Boots or similar.

Sorry to hear your GP isn't being terribly helpful! Can you get a private prescription or see another GP?

Original poster

simpsonsChristmasSpecial · 10/12/2008 21:34

noiamnot - can't really afford to go private Although I may have to start thinking of trying to find the money somewhere. Is it possible to go private for consult then get prescriptions free on NHS?

Lilyloo - Cheers!! It just annoys/upsets me every time I have DD on my lap having a bottle knowing what I give her is making her poorly

Ewe - The only SMA I have seen is the green tin wysoy which is the one which made DD REALLY bad....Is that the one you mean?

OP posts:

noiamnot · 10/12/2008 22:16

I don't know about nhs but you can do that in Ireland.

I have to say the best money I ever spent was on private consult with one of the very few allergists in this country. Not because he told me anything I didn't already know but he documented things and wrote letters and made things happen re: resources, etc.

noiamnot · 10/12/2008 22:17

we were on benefits at the time. We were so desperate we borrowed money.

Original poster

simpsonsChristmasSpecial · 10/12/2008 22:31

Think I may have to think about doing the same

My DH is from Northern Ireland and we go over regularly so could do that as last resort, stay with family there etc.

But am sure I can get prescriptions on NHS over here too.

Have been given a free trial on neocate (thanks to MN) am worried about DD taking it though as she is strong willed to say the least!! Have heard it doesn't taste very nice. GP said the same today.

But do think it is the best thing for her so any advice would help....will try mixing it with her normal FF at first and see how we go...

OP posts:

noiamnot · 10/12/2008 22:43

if you mix with normal formula you won't see any improvement.

ds1 was allergic to every formula there was, even neocate. Luckily I bf him. Unfortunately I ended up doing it until he was 2.5 and I was well sick of it. I think I tried neocate, etc. at around age 15 months.

Am trying to think what you could mix it with. Rice milk is lovely but no nutritional value. But it might improve the taste so use for some parts water?

Original poster

simpsonsChristmasSpecial · 10/12/2008 22:49

Was thinking of adding something that tastes nicer ie vanilla essence or something...

Originally was thinking of doing say three quarters bottle neocate and 1 quarter normal ff and gradually reducing normal ff so she gets used to taste.

She is my my second LO and I have never known tantrums like it!! Today it was because I didn't peel satsuma quick enough!!Wasn't expecting this till at least 14/15m mths!! Dread to think what she will be like when she tastes neocate!!

OP posts:

noiamnot · 10/12/2008 22:51

I think one of the rice milks has vanilla in it.

vanilla a good choice.

poor thing is in pain. it will also affect her behavior.

Original poster

simpsonsChristmasSpecial · 10/12/2008 23:03

Tell me about it!!

I feel bad as she could have been in pain for ages and I just put it down to her being a high maintenance baby

Although she has now learnt that screaming as LOUD as she can will get her what she wants....

Do you think I am best to just put a couple of drops of vanilla essence in each bottle of neocate...don't know how strong the essence is (you can tell I don't make cakes!!)

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noiamnot · 10/12/2008 23:34

honestly i would try rice milk first. there is a brand that is vanilla flavored - Rice Dream, I think

Original poster

simpsonsChristmasSpecial · 10/12/2008 23:42

What would you do with it...mix it with the neocate, then gradually reduce or always put it in iyswim?

OP posts:

noiamnot · 10/12/2008 23:53

I would just add a little to the water to take the edge off of the taste.

if it's that bad tasting i'd keep it in. won't do any harm (unless she is also allergic to rice). You need a full work up on her. Not just a standard RAST that the gp does (which tests for about 5 things iirc). a private allergist will test for all sorts of things. the one we got for ds1 had oogles of info and things we didn't know about (like garlic)

Original poster

simpsonsChristmasSpecial · 11/12/2008 00:01

Hopefully will hear from hosp soon soon...will give it till Tuesday then ring them again.

Have also heard neocate can be flavoured? So may have to look into that.

I just know DD and she will kick off with new milk...if it had happened to ds (now 3) he is so laid back he would not have even noticed!!

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tatt · 11/12/2008 20:11

you could order some lactase drops as the amount of lactase in gripe water won't help much.

It looks like you can get Pepti Junior over the counter and that would be betetr than normal formula. It's not as bad to taste as Neocate/ nutramigen and if she improves on that you should be able to get it prescribed. I'm sorry about your gp - poor things get very little training and have to rely on paeds. Unfortunately paeds aren't always well trained either.

Original poster

simpsonsChristmasSpecial · 11/12/2008 20:58

Have to go to chemist tomorrow to pick up prescription for DD's sore bum as have been ill myself today.

While I am there I will ask how much neocate, pepti jr etc is to buy over counter, just so I know....

Am also going to baby clinic tomorrow to get DD weighed and will moan to HV too. Not sure if she can do much but I guess the more people I moan to, the more something might change iyswim!!

OP posts:

sarsums · 11/12/2008 22:42

Hi Simpson,
Sorry you've been ill today.
Neocate is about £22 per tin, although the pharmacy may mark it up. It only comes in unflavoured, but you can add Crusha milkshake flavourings or Nesquick to Neocate as these are both milk free.
The Neocate for 1 year plus is called Neocate Active which comes in Blackcurrent flavour.

Pepti-Junior is abut £9.50, Nutramigen £8.60.

allergy website
Neocate website

Original poster

simpsonsChristmasSpecial · 12/12/2008 11:03

Just got back from chemist and he said pepti jr is £18.50 for SMALL tin

When I asked my HV today at baby clinic what I should do she said as DD is nearly one, don't give her any milk at all Not quite the answer I was expecting!

So if she cries for a bottle in the early hours I should give her a meal? I think not!!

Going to ask prices in Boots later....

OP posts:

Original poster

simpsonsChristmasSpecial · 12/12/2008 15:58

Good news!!!

I rang hospital earlier to see why they hadn't bothered returning my call a fortnight ago and after holding for ages...they came back on phone and said they will see DD on Tuesday

Even better news is that it is a different pead to last time

OP posts:

noiamnot · 12/12/2008 16:32

that's great stuff! Pediatrician or allergist?

Original poster

simpsonsChristmasSpecial · 12/12/2008 16:44

Am seeing a different paediatrician. Must be better than the last one I saw!!

[hopeful emoticon]

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