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Children's health

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Original poster

what were your baby's real life symptoms of cmpi?

17 replies

JRmumma · 04/10/2013 11:26

My baby has just been diagnosed with reflux and put on meds that seem to be helping. However, as i said to the paediatrician at the time, i don't think that reflux is the whole problem and think my baby may also have cmpi.

I'm not a doctor, but i know my baby and his pain is lower down than his oesophagus and he seems to be in pain in the bowel reigion also and is very unsettled and squirmy when he poos (more than ive ever seen another baby) he screams and cries constantly and seems to get a bit of relief when he finally goes. He isn't constipated though. This seems to have got worse as he progressively had more formula than breast milk and now he is solely on formula its much worse.

The paediatrician said to try reflux meds first and we could consider cmpi when we go back and the reflux meds have had a month to work but its been 2 weeks, my apt isn't for another 4 weeks and my poor child is in so much discomfort both asleep and awake that i want to try the special formula now. However his symptoms don't classically fit cmpi as he doesn't have a rash and is gaining weight.

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bundaberg · 04/10/2013 11:29

inconsolable crying, for hours. he would refuse to be fed, nothing would comfort him.
patches of eczema
very explosive poo, frothy, stinky
sick quite a lot which smelled bad (not like regular milky baby sick)

Original poster

JRmumma · 04/10/2013 12:13

Thanks bundaberg, what were tour next steps. My paediatrician wont budge as 'he has given me his opinion' but agreed to see us earlier than 4 weeks if no improvement in 2 weeks. He said rather stroppily that i could ask the doc to prescribe the special milk but i don't think he will if the paediatrician has said no. I'm minded to try soy based milk for the next couple of weeks and if no improvement go back to the paediatrician and demand the special milk.

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bundaberg · 04/10/2013 12:17

well, we were slgihtly different as I was exclusively breastfeeding. I first cut out egg from my diet as I'd noticed he was particularly bad after that, then I tried cutting milk out and he was like a different child!
I remember taking him to my mums a week after I cut it out (she didn't know) and she said "what have you done with him?" lol

I'd see your GP about prescription milk... they shouldn't prescribe soya formula as it's not recommended any more. they should give you something hypoallergenic like nutramigen/pepti in the first instance. if that doesn't make a difference they can try a completely synthetic formula called neocate, but they're unlikely to prescribe that first as it's far more expensive.

if the GP says no then I would definitely go back to the paediatrician and insist on a script

Jo178 · 04/10/2013 12:37

Similar symptoms to yours OP. No rash, weight gain was always good but she was constantly unsettled, episodes of all day screaming, silent reflux, squirmy, little sleep, hiccups etc etc. GP said colic colic colic and refused to do anything. It wasn't until she was almost two months old that she had severe mucus and blood in her poo that the paediatrician on duty in a and e diagnosed her with allergic ulcerative colitis caused by cows milk protein allergy. She was then put on infant gaviscon, ranitidine and given aptamil pepti milk. She was a different baby within 24 hours! She's now almost 2 and has completely outgrown it.

Original poster

JRmumma · 04/10/2013 12:51

Cheers guys. Have got a Drs appt for this afternoon, im gonna try and get the nutri/pepti milk and if that fails, im going to try soy milk as i can just go and buy that. Not ideal but i HAVE to do something, i know he isn't right.

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Ragusa · 04/10/2013 13:08

Don't let the doctor fob you off with Soy Milk - in the majority of cases it's not suitable for babies with CMPI, and is in any case not recommended for baby boys under 6 months of age owing to concerns about oestrogen-like compounds in it.

My boy's symptoms were:

Evident discomfort, writhing (like your son), and baby vomit that smelled really, really acidic. As things went on, he developed a feeding aversion.

He had no rash, had perfect skin really. He was also gaining weight normally up until about 12 weeks of age - so that doesn't necessarily tell you anything.

Original poster

JRmumma · 04/10/2013 13:12

Thanks. I'm essentially going to go with the intention of demanding it.

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Original poster

JRmumma · 04/10/2013 15:31

Fucking useless GPs!! Ahhhh

Went in there complete with screaming baby and explained all. Doctor tried to tell me that GPs don't know anything about formula and that i need to get my health visitor to tell me what i need and then the dr will prescribe it. What a joke. I eventually made him agree to call a hv and i have to go back at 5 o'clock when ive been assured there will be a prescription waiting for me. If there isn't i think im going to swing for someone!

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bundaberg · 04/10/2013 16:34

wtaf????? I would be very tempted to make a complaint to the practice manager if a GP is claiming that he doesn't know what to prescribe and needs to be told by a health visitor!! that's shocking!

Original poster

JRmumma · 04/10/2013 20:37

I know! Anyway, just to update, ive got apatamil pepti on a weeks trial from him, so im happy with that. Had to run around 3 pharmacies with the prescription to find somewhere that had it this evening but he is just having his first bottle of it now so fingers crossed it works!

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SandyChick · 04/10/2013 20:46

My gp was great. Referred us straight away. Ds was around 12-14 weeks when put in pepti 1. We used infant gaviscon too.

My ds wasn't pooping. He was severely constipated. He would go 6 days without pooping and then it would take a suppository to do the trick. The hospital were fantastic.

I would pester them if you're not satisfied. Changing the formula can be a bit trial and error. It takes a few weeks to see if it is making a difference.

Hope you get it sorted soon.

RunningOutOfIdeas · 04/10/2013 21:17

Glad you've got some Pepti to try. You don't actually need a prescription for any of the CPMI formulas. A pharmacist can supply it to you just on your request. With DD2 I bought a tin of Nutramigen and then went to the GP and explained how much better she was on it compared to all the other formulas we had tried. These types of formulas are very expensive though - £15 to £25 for each small tin.

Original poster

JRmumma · 04/10/2013 21:34

I did not know that! Hopefully i wont need to pay for it then, if its that expensive to buy! Yikes!!!

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Ragusa · 04/10/2013 22:43

Woo hoo, you scored some hypo formula! ( we used to joke it was like baby crack it was so hard to come by ;)

It mightn't work instantaneously but I would wager that after a week things may, just may, be looking up.

It's frustrating being made to feel like generic clueless first-time mum... well done you for being persistent.

Original poster

JRmumma · 05/10/2013 10:02

Cheers! I'm really relieved to have it its unreal.

I don't care what anyone says, first time mum or not you just KNOW your baby and if something isn't right.

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bundaberg · 07/10/2013 20:02

how's it going now JRMumma?

Original poster

JRmumma · 07/10/2013 22:01

He seems to be a bit more comfortable so far on the aptamil pepti. He is doing loads of poos and they seem a bit loose but im hoping that this will settle down when he gets used to the new milk.

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