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

I imagine based on what we feed him he is soya free. I'm very cautious about soya consumption myself and we mostly cook from scratch. I didn't think about eggs though.

Is it a dietician I need to see?

See if they'll prescribe you nutramigen pure amino. It's the most hypoallergenic formula you can get. Nutramigen is completely dairy free though. DD2 is soya intolerant as well as dairy and you'd be surprised how much stuff has soya in it. If you didn't notice a difference id be asking for a test for coeliac to rule it out. It's a blood test (DD2 has had it) but completely rules it out or you know for sure. Xxx

You are so right to trust your instincts. Mums do know bet & so often pick up on things before the Dr's can. While HV don't have the medical training of a GP they do have fantastic knowledge & can often be more helpful then a GP. Did you know that your HV can refer you to certain specialists. If you doctors is in special measures then it might be best to see a specialist.
Before they start changing milk & diets you need a full screening to try & determine what's going on. One you take something it a diet you have to reintroduce it for some time to get tested for it.

My son was coeliac and had the black under eyes, lathergjc etc I was rattling at doors for 2 years before diagnosed.

I kept a food diary with everything eaten and any symptoms to show the doctor

See a paediatric allergist.
Our dear friend is at St. Mary's. Would you like details? He is excellent and has 6 kids of his own.

He's a brilliant consultant and will absolutely guide you further if he feels this is beyond allergies.
Let me know. I'll PM you.

This is beyond the realm of a HV.

My eldest DS was quite unsettled. He was also treated for an infection at birth. He's also always had tummy issues (aggregates by sone cows milk products). He used to have very bad eczema. Most of his problems are gone now. The two things that we found really helped him were E45 bubble bath (for the eczema) and some probiotics for both the eczema and his tummy upsets. Worth a try.

I would definitely push for a peds referral or pay privately if it was within my means.

Can you change GPS surgery.

My DD has CMPA.

I have put a star next to symptom my DD had prior to her diagnosis, from your list.

I know everyone is different.

Poor complexion
Black rings around eyes *
Eczema on face and in hair *
Headaches? (He grabs his head and pulls his hair)
Earaches (grabbing his ears. Teething?)
Tiredness/lethargy - sleeps approx 12 hours at night and 5 hours during the day *
Slow to gain weight
Generally fussiness (although overall happy baby) *
Reflux and silent reflux (medicated)
Sensitivity to sounds *
Constant snotty nose *
Often sounds wheezy/chesty *
Regular cough *
Feeds little and often *
Bouts of intense screaming/pain - calpol and nurofen do help. *
Sometimes unsettled sleep *

The nutrmagen DS is on is just a broken down cows milk formula. I think he could definitely do with being fully dairy free.

Currently sticking with my doctors as I don't want to lose my midwife but as soon as DS2 is born, I'll be gone! Although I wonder whether DS could be moved and I could stay.

The eczema is pretty minor, but is visible - it's largely controlled by a prescription of some sort of emoillant stuff for his bath.

Dh interestingly did just say that we have been giving him more bread/gluten/wheat based products lately - we weaned him pretty much paleo to start with so he had no grains whatsoever. Things do seem to be worse since his diet has changed. I didn't see the link but Dh must have noticed.

I think the only possibilty he'd be having soya is through bread based products - again, the only things he's ever given apart from that are pretty much just 'whole foods'. I'll check the bread and bread sticks tomorrow morning to see what they contain.

I might see if I can book an appointment with my HV rather than just drop into a clinic. It's about time I met my new health visitor! I'll ring tomorrow and see what I can do.

He had some probiotics when he was younger. Might get him another course of those. That'll probably be worth it.

Thank you all. I'll be back!

@TotemIcePole did your DD have any nappy issues? I'm finding the doctors are obstructive due to the lack of nappy issues

the probiotics are a great suggestion, I've used them on paediatric and dietician' advice for my daughter and they seemed to have really helped. We used Biokult for infants - you can get it from Boots. It's very easy to give as you can mix it with food or 'milk' but it isn't cheap. I was told to use it for 3 months in a row to allow it to have any effect.

That was exactly what we used on DS initially. The biokult stuff. It was really good stuff

It could be allergy but it could be coeliac disease, particularly if you think things are worse since introducing grains. Don't modify his diet, it can alter results, but go to your GP and explicitly say that this is your concern. A blood test will give you the answer.

Can you afford to pay privately? If you can then maybe you should. Take him when he’s at his worst ie don’t cut out food that makes him ill or when he’s had ain’t nap.

Make a list or a diary of all the symptoms and show that to the doctor.

Sounds like DS who has multiple allergies; dairy, soya, eggs, cats... We have a cat :(

The shiners and runny nose were ever-present until we were instructed to bathe the cat regularly (not as fun as it sounds!). In fact they haven't completely gone but we're doing our best.

Just something to bear in mind if you have pets.

We haven't got any pets any more. Our dog was pts when ds was only 3 months

We have no way of affording private allergy testing unless PILs are willing to pay.

I've just ordered some probiotics.

WIll call the health visitor tomorrow, first thing

Does this look like allergy shiners?

She never did a firm poo, it was always always runny. I was told it was toddler diarrhea syndrome & the rash was heat rash/viral rash.

Every symptom went completely after taking her off milk, I was BF as well, but she was having milk at the childminders as I was too exhausted to express, she woke every 2 hours at night.

Sorry to hear about your son's health problems and the difficulties you've had getting the right diagnosis and treatment for him. Have they ever checked him for a heart condition? Some of his symptoms eg. sleeping a lot, poor weight gain, breathing problems, low oxygen levels are classic signs of an undiagnosed heart defect. My daughter had a life threatening heart condition that was missed by various doctors, health visitors and midwives. She slept far more than a normal baby and was a poor feeder and had poor weight gain. Luckily, our local GP picked up a "mild" heart murmur and referred her. Now her heart condition has been treated, she is a happy healthy 5 year old. For more info about heart conditions, check out the Tiny Tickers and Children's Heart Federation websites.

Slightly off topic but is answering your question- I wanted to move my kids to a doctors near their school but not me as a friend works there. I was told kids and parents at different doctors raises some sort of red flag. No idea why really.

Her nose was a constant stream of green & clear snot. That was the first thing to clear, probably 5 days.

When he was in hospital we were went to another hospital for a cardiology review. That came back all clear thankfully

Easily could be prusik if you ask me. In my experience allergic shiners look just like sleepy eye bags, except they're persistent!

RatRolyPoly will your cat let you brush it, if so a Furminator comb is brilliant.

It's the saliva DS is allergic to unfortunately Totem, although I guess the less saliva-covered hair there is around the place the better. The consultant seemed to think dipping dcat in the bath up to her neck once a week was the only solution, but I'll certainly try that comb, thank you.