Lactose intolerance (temp) - terrible cramps on SMA LF: any advice, or else where to buy Neocate a little cheaper?

[SalLikesEggnogUnderMistletoe]

After course of antibiotics, my ds developed temporary lactose intolerance (diarrhea, wind etc). Paed (while on holiday) prescribed lactose free milk. GP here then prescribed SMA Lactose free. Whilst that stopped his runny tummy, he gets terrible stomach cramps and wind from that - so much so that he screams blue murder all night, arching his back etc etc.

Have gone back to gp, who said that she can't prescribe anything else, as she thought the SMA LF would work. Now waiting to see paed (going private) next week. Any ideas about what to do in the meantime? Currently I'm using soya, but have read it's bad for boys and for their teeth. Do you think it's worth buying Neocate directly, and if so, where would we find it - can't see in any shops. I could try ordering through chemist, but hoped there was a cheaper alternative (online perhaps?)

Thanks.

My ds had that sort of reaction to Aptamil so the health visitor recommended we try him on Omneo Comfort. You can buy it in large Tesco stores ... it might be worth a try as a temporary measure until you get your prescribed stuff through. OC is not for the lactose intolerant as such but it is much gentler on their tums .... it does lead to stinky nappies though!

SalLikesEggnogUnderMistletoe my dd is on neocate advanve and she is starting on neocate active next week if you pay postage i can send you 5 packs one pack makes 400ml at least that why you can try it and if its ok anddd settles on the active over christmas you can have the other 15 packs, i would send but carnt afford to send myself

SalLikes, can i help be sending you a couple of sachets of neocate advance? thats the 1 yr plus prescription, we had terrible time trying to sort DS out and understand how fraustrating the situation can be.

Drop me email

Sal (think I posted on your other thread)

My DD went onto wysoy and lasted a week before screaming/straining again She was worse than on "normal ff" Read my thread "10 mth old screaming/straining..what to do?" in allergies.

Can't do links sorry )

My local chemist was selling neocate for £18 for a small tin

My GP also refused to prescribe it and said it had to come from pead. Thank God I have appt at hospital tomorrow.

I managed to get some neocate (thanks to MN!!) and she has had her first day on it today But due to horrid taste, I have part mixed it with her old ff. So tomorrow is D day!!

SalLikesEggnogUnderMistletoe going to bed ill chat tomorrow

Hi Simpsons - I read your thread when I was searching for advice. Good luck for tomorrow's appointment!

Sheesh - £18... However, I'm so desperate, if I knew it worked and gp won't prescribe after seeing paed (assuming paed recommends it), I probably have to bite the bullet - can't go on like this.

Good night, twinkling.

Thanks [fingers X emoticon]

If you google "neocate free sample" lots comes up. Haven't waded through it though but might be worth looking at!!

I've just searched, but can't find any (working, anyway) links. Will continue and see if I can find anything, thanks for the tip.

Official neocate website is www.neocate.co.uk

Or try www.actagainstallergy.co.uk

BTW if your Lo is allergic to soy as well then you need to check ingredients of the bread you eat as they normally have soy flour in

Neocate are part of Nutricia (who own cow & gate and aptamil I think)

Thanks. Second link especially is quite informative.

I am quite shocked at your GP. I would change drs. I get neocate prescribed, and it does sound like your dc may need it. It is far too expensive to buy and I do believe you have a right to it. I hope u get this sorted.

I have to admit I was rather disappointed (ok, completely gutted!) when she basically had a "oh tough" attitude after the SMA didn't work. Usually she's really nice - I think she just doesn't know much about babies and baby formula. She also said she can't do anything without me seeing a paed again, but that that would take months anyway, and that at that time it would have sorted itself!!! Luckily we can see private paed (dh's BUPA through work), and hopefully she'll take more notice after his report. I really think she didn't believe me that his bum was almost bleeding (even after all the Bepanthan, Sudacream etc) and nappies every 5 mins when on normal formula.

Not that I have any problem with anyone choosing not to breastfeed (different circumstances, etc etc), but she KNOWS perfectly well why I can't breastfeed, so it's not as if I've got any choice!

No, actually, I take it back, I'm being unfair - she was great when I saw her initially for the SMA. Maybe she really just doesn't know what to do now. I think I'm just tired and emotional now (and clearly unreasonable).

How is your ds on the soya formula? Are things any better? The (small concern) with soya formula is for boys under 6 months, so I wouldn't worry too much. If he's got teeth then just make sure they are brushed well (easier said than done!!)

When can yo see the private paed? I'm sure if he recommends a different formula like Nutramigen or Neocate, yor GP will have no problems prescribing it.

You can get Pepti Junior OTC and can order lactase drops from internet sites like this one www.superliving.co.uk/ or www.buy-biocare.co.uk/biocare_lactase_enzym_b12415.htm

Biocare are a well known and good quality company the Colief might possibly be available more widely.

I would be inclined to phone the paed you saw and possibly to make a formal complaint about a gp who wouldn't prescribe or speak to the paed themselves for advice. "temporary" lactose intolerance can last a long time.

Sarsums, he's doing very well on soya. So if no risk at 8 months (and he is very big for his age as well), that is great news. I have been worried about his teeth a little (he has 4 already), as I'm not sure I get to brush it properly (he's obviously not that keen, although likes chewing it, so I let him do that too). I've been thinking of getting a fleece cloth or something to wipe it with as well.

The paed appointment is on Friday.

Tatt, thanks for that link - really good site as well. I always find searching for online pharmacies leads to someone trying to persuade me to increase my, uhm, well, size... That'll take more than a couple of pills!
Gp's normally ok, so I don't want to make too big a fuss about this. I was really shocked about her "oh, it'll blow over" attitude this time, but I honestly think she doesn't realise. She's good in everything else.

Additional question: while I use soya, what should i do at night (he still drinks milk in the middle of the night, even after i've tried very hard to persuade him to only take water) with regards to his teeth? Just leave the sugar on it, or try to wipe, risking waking him up properly? Thanks.

Sal - hope it goes well with pead on Fri.

If you are worried about teeth (I don't have that worry yet DD still doesn't have any ) I would rub with muslin if you think you can get away with it.

Thank your lucky stars, simpson! I keep telling ds (8 months) that he doesn't need them yet, that I'm perfectly happy to puree until his 18th birthday, but do you think he listens to me?!

Well, he likes chewing, so I might (living in hope) be able to get away with a muslin. Will try.

LOL at pureeing till he is 18!!

How has he been today on soy milk? Do you still want to change it?

DD's poos have been a "strange" colour since starting neocate!!!

Oh, so sorry, completely forgot to ask: How was your appointment today, simpson?

Re soy milk - he's fine on it really. I'll discuss with paed obviously, but after Sarsums' post I feel a little better about it, so am tempted to just keep on using it. That reminds me - I want to search internet to see what the best recommendations for cleaning babies' teeth are.

I have a spare MAM first teething and massage set thingie if you want.

Its basically first toothbrush and a finger puppet type thing that you can clean teeth with. If that makes sense.

The only thing is its pink GOt it free and got 2 so you are more than welcome!!

Our Appt was hard work: saw 3 peads DD stripped and undressed for each one (grrr)Then a bit of a debate 2 thought she had allergies 1 thought she had constipation so consultant called DD stripped again DD crying he says "Don't you have a dummy" (wish I had a 1 liner) He is totally I have neocate already and thinks its constipation too!! Eventually I lost my temper and said "you are not listening to me"

However I FINALLY got what I want referral to dietitian and a prescription for neocate (BUT she wouldn't have got it if not on it already iyswim)Grrrr....

Perfect, I'm so glad for you! It is so annoying when someone won't listen to what you're trying to tell them, isn't it?! I don't mind if someone disagrees (especially if it's something that they most likely know more about than I do), but I get really frustrated if they don't at least want to hear the problem.

Thanks for the offer of the toothbrush, but don't worry, I'll see if I can find it at Boots tomorrow - have to get ds a new toothbrush anyway.

hi sorry not been on dd not well.

anyway do you still want the neocate advanvce? if so i can send you 5 packets for you to try its better mixing with your other untill your ds gets used to it, and if my dd tolerates her new neocate active ill send you other 10 we have left.