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Appointment with dietitian re CMPA baby

(18 Posts)
Craftycakey15 Sat 25-Feb-17 20:21:41

We are seeing a private dietitian next week as our baby has silent reflux and CMPA, and we need to wean early in a hypoallergenic fashion. Our NHS referral date is months away so we have had to pay to see someone before we start weaning early at 17 weeks. Does anyone have experience and can tell me what I mustn't forget to ask to get the best out of our session? Thanks!

MyBreadIsEggy Sat 25-Feb-17 20:24:25

My DS also has CMPA but we've been seeing a NHS dietician. Can I ask why you've been advised to wean early? As I've been given the exact opposite advice. I've been told to wait as long as I can!

Craftycakey15 Sun 26-Feb-17 19:33:05

We saw a top expert, Prof Mike Thomson, so I very much don't doubt his judgement. The baby's weight gain has been slow and she dropped down the centiles.

MyBreadIsEggy Mon 27-Feb-17 09:35:31

Crafty bizarre how people give out opposite advice for the same problem! Makes me doubt myself even more sad

MyBreadIsEggy Mon 27-Feb-17 09:35:48

My DS also has slow weight gain and is dropping centiles

Craftycakey15 Mon 27-Feb-17 19:00:09

We were told not to wean her early by dietitian today as she needs the calories she will get more from through formula. We have to go back in a month and see her about starting then. More conflicting advice!

MyBreadIsEggy Mon 27-Feb-17 20:25:15

Crafty I'm pretty happy about waiting to wean to be honest! I'm terrified of weaning DS sad So scared of giving him something by accident or DD trying to be nice and share with him!! I've started trying to wean DD off dairy slowly and she's doing ok so far with Oatly on her cereal and Vitalite on her toast/sandwiches! I figure that it's safer for DS if the entire house is dairy and soya free!

Craftycakey15 Mon 27-Feb-17 21:39:56

Oh really? Good idea! So your eldest didn't have reflux and cmpa? I'm scared of it happening again with a next child

MyBreadIsEggy Tue 28-Feb-17 08:54:24

She had reflux but not CMPA.

NoraDora Tue 28-Feb-17 08:59:09

What were your symptoms? I think my lo may have silent reflux. It seems like he brings feeds back into his mouth and then almost chokes them back down.

MyBreadIsEggy Wed 01-Mar-17 12:40:54

He would take a few sucks at the breast/bottle (we tried both!) then would start struggling against it, come of and scream sad that cycle would continue until he decided he's eaten enough. He was rarely sick, but when he was, it was with impressive force! Since his allergy was diagnosed, he's been on Neocate formula and Omeprazole to treat the reflux symptoms

PragmaticWench Wed 01-Mar-17 12:46:50

The latest allergy advice is to wean around four months, to help prevent allergies from developing as it's best to introduce an allergen to the gut before possible skin exposure. However, that does have to be balanced with how well they're doing weight wise, as you've found.

I found it easiest to write a plan of the top 14 allergens, and introduced them a few days apart, starting with them baked and just a tiny bit, then gradually in a more raw form and not cooked (egg aside!).

That's a very methodical approach though and just because I like a definite plan. May not work for everyone.

Leatherboundanddown Wed 01-Mar-17 12:47:29

My dd has CMPA, she is 5 now.

For info, we did wean at 17 weeks and the rationale was she was so sick (projectile reflux) that the weight of solids would be less likely to come back up. It did work for us and she was much less sick on solids.

By 9 months she was completley off her domperidone and ranitidine meds. There is a product called neocate spoon that you can use as a first feeding food if you already have a neocate prescription. My dd would never take this but you could always mix it with porridge/puree I guess.

We started with veg purees and it all went well. I found Oatly the best supermarket milk to use along with oatly cream if you need to add calories (olive oil and avocado oil also good to mix into foods).

My dd was never underweight so I didn't have this particular worry but I know many who have and have done well during weaning.

Craftycakey15 Wed 01-Mar-17 22:18:18

Interesting! We saw a top paediatric gastroenterologist and he said wean early at 16 weeks and then the dietitian who has milk allergy specialism said not to as she needs to put on more weight and will get more calories from the milk. We are going back in a month with a view to the dietitian advise us on starting weaning then

purpleporpoise Wed 01-Mar-17 22:28:47

DS was put on nutramigen at 8w for CMPA and became a different baby overnight.
We were told to wean at 17w with purées and avoid dairy
I had planned to do blw at 6m but they weren't keen.
I suspect their information was out of date because their comments were things like, hewon't get enough to eat.

We started the puréed about 6m and it went ok. I did the Annabel Karmel ones and he ate fruit pouches. I also made him readybrek with nutramigen and fruit purée.

He was about 7m when I discovered that my friend had given him Heinz biscotti which contain milk. He had no reaction at all. So we tried a few different dairy products, small amounts at first then increased them.
By 10m he started nursery and had had cheese, yogurt, and other things containing dairy with no effect.
So we asked nursery to feed him the same food as the other children and let us know if there were any ill effects - there weren't.
At 12m we phased in cows milk and stopped the nutramigen.
He's now 18m and eats anything.
I don't know if he grew out of it, or by introducing dairy gradually he built up a tolerance but we're glad that he did!

smc0502430 Tue 21-Mar-17 08:53:13

Hi Craftycake15, we have a LO with CMPA and have had our first dietician appt and I must say it didnt help at all, we were told that he needs to eat more but our issue is that since going onto Nutramigen (he has been on it for 4 months) he has been gassy and constipated and cries when passing stools even on Lactalose to the point of blood sometimes. We have been told by the dietician and GP he needs to drink more fluids which will fix everything.....It didnt. I found out about Neocate which contains no diary at all compared with Nutramigen and asked can we try him on this, we have been told he needs to stay on Nutramigen until his next dietician appointment in 3 months, the only reason I can see for this is because of its cost compared to Nutramigen. As a parent you can probably synpathise that you cannot see your LO crying everyday passing stools, so we have bought Neocate online for £30 a tin and his symptoms have settled right down, he is eating more and drinking more and doesnt cry out in pain. Now all we have to do is keep shelling out £30 a week until our next appointment in which he will probably be completely on solids at this point.

MiaowTheCat Tue 21-Mar-17 09:42:56

Our NHS dietician was absolutely fantastic - we only really dealt with her via the HVs phoning her until the 4 month mark when they start doing formal appointments in the lead up to weaning.

We had endless battles with our GP who was refusing to honour the dietician's reports saying DD2 needed to be on Neocate and by the end it was a combination of the dietician, me and the HV all working on it to get the GP to come into line - the dietician told me later that the GP in question had a track record of parents being so worn down they left the practice rather than take her on over Neocate prescriptions and that they needed more parents like me to fight her and win!

She was very very good though - she'd had children with allergies so had some really practical solutions to things like the fact dairy free cheese is so awful (use the really narrow end of your cheese grater so it has a chance of melting) and spreads to use to bring the cost of it all down as well.

We were told to wean early - but that was because even on neocate DD2 still had happy chucker type reflux (where they can puke it all up exorcist style but aren't getting the acid discomfort from it)... didn't work - she puked till over the 1 year mark, but it made the vomit more interesting.

A neocate-puke soaked carpet is not a pleasant thing.

She's since completely outgrown it all by the way - passed the rechallenge ladder when we worked through that and been discharged from the dietician.

Babybell2 Tue 04-Apr-17 10:52:22

Hi
I'm new on here but was specifically looking for advice on CMPA. We also saw Prof Mike Thompson who has diagnosed it in my 7 week old son (his twin sister may also have it but we're just keeping an eye on her at this stage).

I am looking for a suitable dietician for advice on how to manage it. Would you recommend yours? Could you send me the details?

Many thanks!

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