There's something wrong with my baby but I don't know what

[Prusik]

This might just end up as a massive vent. Probably easiest if I start from the beginning.

Ds was born at full term. Simple birth. 6lb 6oz so not a massive weight, but ok. He was admitted to hospital for some sort of unknown reason which over three days, became clearer that it was an infection. It was later identified as a chest infection. We had a week in hospital (with a stint in special care), were released for 36 hours and then admitted into children's ward with breathing difficulties. Again, it was subtle but his oxygen levels.were low. Three weeks later, after lots of tests they decided it was reflux which was aggravating his airways. With treatment for reflux his oxygen levels improved.

After a few more minor hospital admissions, I went to my GP at the end of my tether because we were having extended periods of intense, high pitched screaming. With a few hospital visits and GP visits we were put on a formula for mild milk allergy. Within a week the screaming stopped.

These days, Ds is ten months. He's been constantly poorly since the beginning of summer. He has black rings around his eyes. Sleeps far more than I feel he should. Just generally looks unwell. Constantly had a crusty nose. Eczema on his head and face. We give calpol and nurofen far more regularly than I'm comfortable with and my instinct just tells me he's not right.

GP says as long as he's hitting his milestones and gaining weight then as far as they're concerned, he's fine. But I really don't think he is fine. There's nothing concrete, just instinct. My amazing health visitor has left. She did lots of extra home visits and always reassured me that she didn't feel like I was a paranoid mum and she too said she understood my concerns. I just don't know where to turn and don't know what's wrong with my baby

Sounds like cmpi to me too, especially the dark circles and congested nose. Possibly gluten too. He needs neocate if that is the case and completely free from any milk.

You need to get him tested for coeliac disease.

Every single thing you’ve described could have described my nephew. He has a dairy allergy, it is quite severe and he can’t have anything at all with dairy of lactose. He’s now 4, they keep testing every so often to see if he’s grown out of it. He hadn’t yet but as long as he stays on his strict diet he is a happy healthy 4yr old and getting on well.
I’d push for further testing personally

My son is cmpa and also soya allergic- huge huge huge improvement as soon as both were 100% cut out. He reacted to all the formulas so I ended up bf for longer than intended and didn't go back to work until a year as a result. I was totally free from dairy and soya in same time. He still has eczema which flares a lot atm so not ailing out yet another issue but so much better. For eczema child's farm baby moisturiser (one am with such image not hands) is brilliant.
The only formulate which is DF is I think Neocate. That and nutramigan are really expensive so they will be very loath to prescribe it- I'd ask for dietician referral and join fb group cmpa for babies it's a godsend

Where about do you live? Could you look into going private?

Trust your instincts. Keep pushing. There’s a CMPA group on Facebook you might find helpful.

DO NOT give him goats’ milk - the proteins in other animal milks are very similar to cows’ milk and most CMPA babies react in the same way.

Bread has dairy in and 9/10 soy flour (lots of babies allergic to cows milk are also allergic to soy) so I’d cut that and anything else with dairy/soy in.

Good luck. It’s a long road.

Got halfway through your post and thought allergy/intolerance.

I hate bad mouthing HCPs, but your GP sounds like an utterly useless ignoramous. I am furious on your behalf that your poor little chap has been left to suffer like this. You do NOT have to have failure to thrive, or nappy issues to have allegies or intolerances. My DD is very intolerant - not only to cow's milk protein, but also gluten, soya and a whole host of other seemingly-innocuous foods, such as grapes, carrots, sweet potato, banana, sardines, and many more. She is on a very restricted diet.

Despite the above, we have never had issues with diarrhoea, or weight/growth. She has a very mild tendency to constipation, which could in fact be caused by her hypermobility, rather than the intolerances, and only ever had eczema very mildly under the age of one. Her only symptoms now are reflux and stomach pain. Despite this, we have been taken very seriously by the allergy consultants at St Mary's, where DD attends the paediatric allergy clinic.

Can you request a referral to your nearest paediatric allergy clinic? You need to see a specialist, rather than a general paediatrician, and it also means you will get access to a dietician, skin prick testing, expert prescribing of meds, and referral to paediatric gastro-enterology (or other specialisms) if that is required.

I'll push for a referral. Today might not be the best as he's been up every hour since midnight and has a fever. He's constantly poorly.

I wouldn't give him goat milk as I have a cow's milk allergy and goats milk gives me a mild reaction also. Equally, I give him the bread that I have and I have a diet 100% free of cow's milk. Soya is definitely one to look at though.

I think the problem is, I never get to see the same gp twice these days. They always listen to his chest, take his temperature, look in his ears and then declare "he presents as a well baby." Same bloody phrase every time. It must be written in a manual somewhere. This is the first time I've written down all the symptoms in a list though. I'll write it up and take it in. My housemate is also a paramedic and does some work in the hospital, he's going to ask one of the consultants to have a chat over a coffee

I missed something, sorry. Going private isn't an option. We're a family with, currently, a very low income

sorry I haven't read the whole thread but I wanted to come on and say you should investigate whether he could be coeliac. Our neighbour has a son who used to be very much like yours is now. He was diagnosed at 18 months and the difference in him now it is being addressed is incredible. Good luck.

I wouldn’t give soya. My ds reacted dreadfully to soya - he was also intolerant to cows milk. Soya gave him a contact rash and green poo.

Sometimes with doctors you have to say the right things to make them listen. Write yourself a note with key points before. Especially the fact that there’s a genetic link here with you and your dh.

Sounds very much like CMPA. Agree with posters above re no soya. Push for a referral but in the meantime can you buy some Neocate or similar to see if it makes a difference? Its £££ and you may have to tell the chemist that you have a prescription but the dr messed it up or something or some won't sell it to you. But it is worth trialling for a week or two. If symptoms go and then come back when you reintroduce then you have found your culprit. I would keep a food diary too in case there is something else.

Good luck

Can you not just buy cows milk free formula and try it?

If you Google the N.I.C.E. guidelines for when to refer babies with possible allergies to an allergy clinic you could take those with you to the GP to support your case? Eczema, a milk intolerance/allergy and a family history of allergies should have sent you already, your GP is crap!!

It took 7.5 months of awful symptoms and me crying on GPs and paediatricians to get DD diagnosed with CMPA and she was ten months when we found out about the soya and egg. I'll never forgive those doctors for being so dismissive of a screaming and non-sleeping baby.

Do you think it's worth altering his diet before I go to the GP? Just checked, the bread does contain soya. He has scrambled eggs or porridge most mornings and obviously toast and breadsticks contain gluten. He only has bread once a day and in the afternoon, he nibbles on a breadstick.

Glad his cardiology review came back clear. Sounds like other people have good ideas about what it could be. Sorry if someone else has suggested this already, but are you able to change gp surgery? I changed gp surgery last year and my new gp surgery is much more thorough. Our local facebook parents forum was good for getting advice about which is the best gp locally.

OP you really, really need to push harder with the GP. Chopping and changing his diet is difficult because you don't know what he's allergic to.

Could be the egg!

My DS has CPMA and is under the care of a dietician and paediatrician. He's also 10 months old. We were told in no uncertain terms to avoid soya before 12 months. He's on milk free formula and oat milk. The dietician said no other milk apart from this at this age. In a few weeks I can try almond milk.
I hope you get a referral and some answers.

I can't work out why we were referred to a dietician when he was first put on nutramagen. The GP said the hospital needed to do the referral but he wasn't under the hospital

Weren't*

Seems odd that the GP would just refuse

Definitely push for a referral to an allergy clinic or a dietician, as both can organise allergy testing and will have proper knowledge of what you should and shouldn't give your DC. Check that the referral isn't to a standard paediatrician as they are often lacking in allergy knowledge (been there and wasted lots of time!) and can't order testing.

So I've booked an appointment with my health visitor on Thursday. It's the first time I've met her as my old one left. I'm so gutted as my old health visitor was totally onside about DS's health issues - we had regular home visits to check on things pretty sure that says it all!

I haven't read the whole thread so someone might have suggested this already. Have you had his ears checked? If he has lots of mucus and blocked nose, be may also have glue ear. THis can be checked by GP but preferably by Ear Nose and Throat specialist. This can cause earaches and headaches. It's obviously not a solution to any of the problems but might just help with some of the symptoms if it can be diagnosed.

Glue ear is an interesting thought. He's had his ears checked by the gp every time I see them about his wheeze (I only go when it gets really bad) and they've always said his ears look fine. That's not to say they haven't missed something.

I hope my new health visitor is nice when I meet her on Thursday and will offer some support

My HV was bloody useless. My DS was diagnosed at the hospital at 3 months with severe reflux and I knew there was something wrong but the HV said "posseting is normal". It was not posseting at all. So definitely trust your instincts. Your little one does not sound well and that amount of sleep is way too much for 10 month old but he clearly needs it which is not right. Refuse to leave your gp surgery until they do something.