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Infant feeding

Get advice and support with infant feeding from other users here.

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Original poster

A moan- sorry

45 replies

strawberrycake · 13/09/2010 12:50

My son has been waiting ages for help with his eating. At 6 weeks he stopped gaining weight above the odd ounce here and there (hate to say this but this is also when I stopped expressing as milk dried up). He went through weeks of diarrhea and pain and was finally prescribed soya and referred to pediatrician. Soya has slowly got worse and worse over the 5 weeks he's had it, now he's so constipated he's in pain. I've given him normal formula to relieve the pain as it's not fair on him. He's now got a rash all over and is developing ezcema (doc given cream today). I've just found out he's got appointment with dietician in early November when he'll be over 5 months! It's just not fair on him to go from 6 weeks to over 5 months with all these feedings issues. I had to wait ages for docs, then over a month for pead and now over a month for dietician, 3 months in total just to sort out bloody milk. I know there's a list of children waiting but he's waited nearly 3/4 of lifetime to see someone about this and I wish they could hurry up. Annoyingly according to the receptionist he could be seen a little earlier except the head dietician at the hospital wants to see him herself and her waiting list is a month longer! I rather he just saw anyone in the department a month earlier!

OP posts:

KnitterNotTwitter · 13/09/2010 12:52

I think your doctor can prescribe some other formula's if the soya formula isn't working...

So sorry your bubba isn't happy it must be so upsetting for you.

Original poster

strawberrycake · 13/09/2010 12:54

Saw doc today, wants to wait for specialists now as multiple problems.

OP posts:

thisisyesterday · 13/09/2010 12:54

ask the GP to prescribe a non-soya based hypoallergenic formula.
nutramigen or neocate or something like that

and point out that you CAN'T feed him soya as it's clearly causing problems so unless they want a starving child on their hands they better give you something you can actually use.

get shirty with them if necessary

thisisyesterday · 13/09/2010 12:56

sorry, x-post.

still stand by what i said tho! he CANNOT wait for specialist help. they're suggesting you give him something entirely unsuitable while you wait and that isn't acceptable.

soya shouldn't be given to little boys anyway. see a different GP, or insist on a referral to a paed

Original poster

strawberrycake · 13/09/2010 12:57

He's had paed who referred to another. Each time there's long waiting lists. Receptionist tried to help but no luck.

OP posts:

MumNWLondon · 13/09/2010 14:53

I agree with other posters, if you are not getting referred until November and both soya formula and also normal formula is not agreeing with him you have to see GP again and demand either immediate referal (this week) or hypoallergenic formula.

I agree get shirty - tell GP (can go to a different one??) that your son is ill on the soya formula and as there is a wait you want to try neocate or nutramigen in the meantime. Be very firm.

Alternatively you can turn up a A&E?

Original poster

strawberrycake · 13/09/2010 15:56

Thanks. Referrals are all dealt with at hospital end, GPs simply pass on a letter to them. Reception said she will call me back tomorrow, she was nice to be fair and sympathised, she's emailing the dietician.

GP also has been very good to be fair, he means well but admits he doesn't have a clue. I think he has an 'it's out of my hands' attitude now hospital are dealing with him. You can see the 'oh no, not them' face on him even though he tries to be friendly! He said 'that looks like a virus' when he saw the rash, but then admitted I must be sick of hearing that!

I don't think it's an A&E situation, thankfully he's gaining some weight and I've discovered he seems at least happy on normal formula, rather than fretful on soya. THe rash and ezcema are not good though!

OP posts:

MumNWLondon · 13/09/2010 17:51

Your call, but I don't think the GP sound "very good to be fair". If the normal formula is ok then thats fine but I thought you posted earlier that the normal formula made him really ill?

hildathebuilder · 14/09/2010 09:46

Oh Strawberry, just when you think it is getting better. Does your A+E have a paeds A+E? If it does personally I would go there. I went in once with my DS when the GP didn't have a clue, and although there was a sense from the paeds that they didn't see the issue (which was a reflux one) as either an accident or an emergency they did help, and then also said call if I had any questions. Equally the paed dietician said the same to me, and I have called her once and got lots of reassurance. If you get nowhere today, you could therefore try A+E???

Alternatively make friends with the hosptial dietician secretary and someone should talk to you before the appointment comes through (again I've had that with my DS consutlant twice whent he GP was clueless)

Good luck

MumNWLondon · 14/09/2010 09:56

Actually I agree about the paed A&E, esp if he is really constipated at the time - find out which hsopital near you has one - that way you'll see paed immediately.

Original poster

strawberrycake · 14/09/2010 20:53

Hilda, secretary is lovely. She called me to say she'd spoken to dietician and she'd call me this afternoon as can't do earlier appointment.

Dietician not so nice, didn't call.

He's been to A&E before and frankly I wasn't impressed with my local children's A&E. Just got the 'it's a virus' line.

OP posts:

narmada · 14/09/2010 22:15

Good grief, what an awful experience for you all. You have been appalingly treated by these supposed health professionals - I have friends around here who have been seen very quickly (e.g., within a week or 2) by dieticians and paeds on account of similar problems.

I know it's not always a good thing to attempt diagnoses on the basis of internet posts (!), but I would say.... it very much sounds like your son has a severe intolerance to cow's milk protein (CMP), and quite possibly soy protein if that is also causing problems. CHildren with CMPI often can't handle soya either. Exzema and failure to thrive (put on weight) are classic symptoms of CMPI.

Of course, it could be something else entirely but that was my first thought. I stress I am in no way medically qualified though.

Please do go back to the doctors, or another GP in the same practice, and insist on a prescription for Neocate.

Also, do you have a good health visitor/ drop-in clinic? I would think they would be on your side as they are usually absolutely paranoid about weight gain issues!

narmada · 14/09/2010 22:21

Here is an abstract on CMPI from the British Medical Journal if you want to go to the GP armed with some information:

ep.bmj.com/content/early/2010/08/03/adc.2007.118018.abstract

Original poster

strawberrycake · 14/09/2010 22:35

I'll go to clinic on Tuesday when it's open. And yes they are paranoid, this whole thing kicked off originally as a big thing rather than just a stomach upset because of hv reaction to weight gain! Tbh I've been avoiding them but will have to go back.

What pisses me off is we'd be seen a few weeks earlier if this woman who can't be bothered to call wasn't insistent on seeing him herself.

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ClimberChick · 15/09/2010 04:46

strawberry: I'm so sorry this is happening to you. If I could (aka if I wasn't a plane away) I'd fed-ex my entire frozen milk supply to you its even dairy free).

Keep posting for support

Original poster

strawberrycake · 15/09/2010 08:09

I wish SO much I'd tried longer with bf. I tried for 6 weeks but we just didn't manage and milk dried up expressing alone. I wish I'd pushed for help with it.

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WillbeanChariot · 15/09/2010 08:19

Hi Strawberry. I read your thread but I don't have any advice, except that I just saw your last post. I exclusively expressed for a long time (prem baby) and I have read that it is possible to stimulate your milk supply to start again. Not easy but can be done. I wonder if one of the BF help organisations might have some advice on how to do it if it's something you'd like to try. Hope you get the help you need soon, sounds like a nightmare.

MumNWLondon · 15/09/2010 09:06

Strawberrycake - my SIL did BF her DS who had CMPI - for 15 months, and during this time she had to carefully avoid dairy and soya. It was very difficult, and she did try getting him to take the neocate as she got very fed up of BFing but he wouldn't probably as it tastes yuk (BTW her paed said soya formula should not be given as it can sensitise the baby to soya and a soya allergy on top of CMPI would be very difficult). Her second DS also has CMPI and she is still feeding him (and avoiding dairy and soya), so if there is a next time you can be more prepared.

FWIW Her older DS (age 3) has now grown out of CMPI and can drink milk.... but he is allergic to eggs, sesame and peanuts. Younger DS (age 1) has grown out of CMPI and no allergies. Both have very mild eczema.

hildathebuilder · 15/09/2010 09:30

Hi, I would try the nice secretary again and again and again until she hassles her boss to call you. It certainly works with a number of my colleagues and clients as a way to get an answer when you can't ptherwise get one.

In the menatime perhaps your nice GP could precribe neocate, at least you could try it.

And as for the BF, try not to worry about it, you tried, you didn't have the help you needed and it didn't work. It is not your fault your DS is suffering.

narmada · 15/09/2010 19:49

I re-established breastfeeding after exclusive formula feeding for nearly 8 weeks from birth: this might not be an avenue you want to go down (it is hard work and not a guaranteed success), but if you think you fancy a shot at it then let me know and I can offer some guidance.

Original poster

strawberrycake · 15/09/2010 19:55

Good news. After another phone call it's been agreed it's urgent and he has an appointment next week. His skin is a mess. He had the most beautiful markless soft skin and now it's a bumpy dry state :-(

OP posts:

narmada · 15/09/2010 19:56

OH that's great! so glad you got an appointment sooner rather than later.

Original poster

strawberrycake · 15/09/2010 20:28

sorry btw, not ignoring you regarding bf but I think it's a no go. Barely produced milk plus back to work part time so time probably not what it needs be. Plus no promise of a latch from monster. It's been 9 weeks now without.

OP posts:

narmada · 15/09/2010 20:29

No offence taken at all. Definitely not for everyone!

Original poster

strawberrycake · 15/09/2010 20:33

I think with everything else it'd be the fight that broke the camel's back! If I knew it would work maybe I'd have the will, but a second failure would crush me. He has NEVER latched either so would be one hell of a fight (up until last week I still tried the odd latching on in a vain hope.)

OP posts:

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