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Allergies and intolerances

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Original poster

doctors or health visitor won't listen to me...

27 replies

mumineedapooooo · 20/04/2015 19:33

Hi, ds is 5months old, since about 2weeks old we have been having problems with him feeding, after the 1st oz he is screaming, spitting it out, arching back but obvious he is starving. Along with this he is very sicky, continuously sicking up little bits till it's watery and due another feed and then it starts over again. He has many trapped wind screaming episodes throughout the day, mainly when he's trying to sleep. His poo is very loose and I have to change his clothes every time he go's.
I have been to the doctor and spoken to the health visitor several times about it but they just say it's normal or look at me with pity and say it's colic and it will pass.
I was allergic to cows milk as a baby and so was my dm.
I know and feel this is not normal and not just colic but how can I get them to listen?
I would be grateful for stories on how you got them to listen and help.

OP posts:
JiltedJohnsJulie · 20/04/2015 19:49

Do you think it could be Cow's Milk Protein Allergy? Have a look at this and see if your LO has the symptoms. If so, you may need to go back to the GP and insist on a referral to a Paed and a Paed Dietician. Is there anybody that you can take with you?

Another thing to consider is tongue tie. I'm CMPA and for ages thought my DS was too but it turned out to be tongue tie. Have a look at this and see how many of the symptoms your LO has.

Good Luck.

CoodleMoodle · 20/04/2015 20:37

This sounds EXACTLY like my DD, only difference is she didn't have bad nappies - she had constipation instead (she still does sometimes so I think that's more her rather than a symptom). I feel so sorry for you and your poor DS, it's horrendous.

Please go back to the GP and fight for your DS. It can be hard, but you really need to insist as much as you can, take someone else with you to help if you can (my DH was stuck at work so my DM came with me, just having her there made it easier). This was after a GP and a HV both told me that it was impossible for her to just 'develop' CMPA, and that she would've had it since birth. As soon as I got a GP to listen to me and she was put on the right formula, she was a completely different baby. Slept, ate, smiled... It was amazing. I think I just got lucky with a good GP, but also told them that the HV had told me to go back (she had, sort of, but I exaggerated it a bit).

I really hope you can get this sorted out ASAP. And please feel free to PM me if you want to. I know how awful it is.

Liara · 20/04/2015 20:42

Is he ff? I think so from your op but not completely sure. Is he gaining weight appropriately?

If so, can you not just try him on hypoallergenic formula, or a different kind of formula?

If he is bf, then you can go on an elimination diet to see whether he improves.

He could just have a lot of reflux, many babies with reflux have cmp intolerance but some don't. It is really difficult (both of mine had it) but he will grow out of it and it probably doesn't need treating at this stage if he is gaining weight as he should.

Try feeding him upright and keeping him in that position for half an hour after feeds, that can really help.

Original poster
mumineedapooooo · 21/04/2015 09:32

Thank you for your kind replies.
Jilted I really do think it's a cows milk allergy.
Coodle, I don't really have anyone to take with me, I have no family around and dp seems to have his head in the clouds with it, he's supportive but doesn't seem to realise how much of an issue it is as he doesn't spend all that much time with us at the moment.

Yes he is ff fed liara, since he was 6weeks old. He is gaining weight that's why the health visitor and doctor thinks he's fine, plus he's all smiles when we go to the surgery.

I've bought some nutramigen myself but he point blank refused it.

I just feel so totally alone in all this, I keep thinking oh I'm being silly and looking for problems and he will be fine soon and plod on. But I've done that for 5months and he's not any better.

OP posts:
LaurieFairyCake · 21/04/2015 09:36

Can't you just switch to non cows milk food and see if he gets better?Confused

Original poster
mumineedapooooo · 21/04/2015 09:40

I've tried nutramigen but he won't take it, is there anything else I can try?

OP posts:
LaurieFairyCake · 21/04/2015 09:49

There's dozens of lactose free formulas (luckily) so there's bound to be one he likes. Possibly the most expensive trial and error unfortunately. Sma/hipp/natures organic all do lactose free.

Original poster
mumineedapooooo · 21/04/2015 09:50

But that's lactose free not cows milk free?

OP posts:
LaurieFairyCake · 21/04/2015 09:57

There are others that are completely cows milk free but the starting point is often that it's the lactose they're likely intolerant to.

juniorcakeoff · 21/04/2015 10:07

No Laurie babies are much more likely to be cows milk intolerant than lactose intolerance. True lactose intolerance in babies is very very rare and fairly obvious from birth, babies with lactose intolerance react very badly even to breastmilk from the start. On the other hand some degree of cows milk protein intolerance in babies is quite common.
Nutrimagen and Pepti Junior have the cows milk protein already partially digested so less likely to produce a bad reaction.
If babies are still symptomatic on this, then nutrimagen AA and neocate are the next options - they are amino acid based.
I think the health profs are thinking that if there is really a problem feeding, then why is your baby gaining weight? Often with CMP intolerance there is weight loss or dropping through centiles.
...the fact that he has very loose stools could be a signifier of CMP intolerance but the only way of testing for it is to completely remove it from his diet for 4 weeks and then reintroduce to see if symptoms return.
If your baby won't take nutrimagen then try pepti junior as a start, that can be bought but if I were you I would keep going back to the GP.

Was he this bad when you were breastfeeding and why did you stop? Babies with CMP intolerance usually get significantly worse on formula as the protein is not broken down is it would be in BF where the CMP is coming from Mum's diet. The reason I ask why you stopped is just in case of tongue tie, as Julie said symptoms can be similar due to all the air they take in.

Original poster
mumineedapooooo · 21/04/2015 11:09

I stopped breastfeeding at 6weeks because of all the crying, he would pull away from me suddenly mid feed, screaming and spitting milk out. It's high pitched pain crying. I thought it was me, by 8weeks he was worse and doing it with every feed.

OP posts:
ThumbWitchesAbroad · 21/04/2015 11:10

Did you try cutting dairy out of your own diet before you stopped breastfeeding? Despite there being a lack of understanding of how this works, it does make a difference

ThumbWitchesAbroad · 21/04/2015 11:12

Also have you tried Nannycare goat's milk formula? www.amazon.co.uk/Nannycare-Nanny-Goat-Infant-Nutrition/dp/B0012THL00

Original poster
mumineedapooooo · 21/04/2015 11:19

No I didn't thumbwitches, I didn't really have a clue what was going on. No I haven't tried the goats milk, dm says I was on goats milk as a baby and to try it, but if he is allergic would he likely be allergic to goats milk too?

OP posts:
ThumbWitchesAbroad · 21/04/2015 11:24

Not necessarily - some babies are, some aren't. It has to be worth a try - I've had 2 friends with CMPA babies who were ok on nannycare.

ThumbWitchesAbroad · 21/04/2015 11:24

And tbh, if your mum used it for you and you were ok, then there's a better chance that your baby will be ok on it too.

ThumbWitchesAbroad · 21/04/2015 11:27

Try this website www.natureshealthbox.co.uk/baby-child/organic-baby-food/formula-milk/nanny-care-goat-milk-infant-nutrition-400g for info - it says that it's low lactose as well, which will help a bit if he also has lactose intolerance

Original poster
mumineedapooooo · 21/04/2015 11:30

Ill have a read, thank you.

OP posts:
EssexMummy123 · 21/04/2015 11:32

What you could do is pay to see a paediatric consultant who specialises in allergies privately which is what we ended up doing, should cost around £150 at your local BUPA / Spire etc or a bit more if you go somewhere like the Portland. They will write to your GP if they think there is a problem.

Oh and also what we did was gradually switch to dairy free - e.g we mixed the milk up in the same bottle so 10ml dairy free added to usual formula, then 20 until we were totally dairy free.

The littlerefluxers forum has a list of paed consultants that parents have used across the country.

duvetfan · 25/04/2015 20:00

Hi op. Ds sounds a little like yours. He is bf but was diagnosed with reflux when tiny. He wouldn't take gaviscon except in a bottle so we gave it in the evening in formula. After a few weeks he was arching and totally refusing a bottle.
He then developed eczema. luckily my gp referred us for allergy testing. We were there this week and I have to exclude eggs and dairy then return in 2 weeks. You need to push your GP for help. Good luck op and I hope you get this sorted.

Original poster
mumineedapooooo · 26/04/2015 19:54

Well I decided to give goats milk a try, he has been having it since Thursday and seems a lot better! No exploding nappy so far and it looks like normal baby poop, still a little sicky but not as much. He is still getting painful trapped wind though. A little grumpy but he's not well at the moment.

If this is going to work, how long should I expect to wait to have all symptoms gone? Also should I tell health visitor about switching his milk?

OP posts:
JiltedJohnsJulie · 27/04/2015 18:10

Please do tell your HV yes and insist on a referral.

Is it regular goats milk he is having or goat milk formula?

JiltedJohnsJulie · 27/04/2015 18:34

Oh and have you tried putting vanilla essence or nesquik in the nutrigram?

You're definitely not alone, have a look at this FB group Wine

JiltedJohnsJulie · 27/04/2015 21:56

Have a read of this on Goat's Milk formula too.

Bigbadgeorge · 27/04/2015 22:05

Pepti formula is more palatable than nutrimagen. My dd took it no bother. It's very expensive but you can get it prescribed.

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