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

Thank you all. I'm beginning to think celiacs is possible. We kind of cut out cross contamination - oats we use free from oats but the oatcakes we buy aren't fully gf. It's literally only the oatcakes though as everything else I make from scratch. They are only a very recent addition to his diet.

Dh husband is celiac (and his cousin) apparently they have some difficulty absorbing certain minerals so that could be contributing towards the tiredness.

Tried to get him weighed today but they've cancelled the clinic. They're down to only a few a week now so it'll have to wait till Wednesday.

His nap lasted four hours today and he was in bed at six as he was so shattered.

I tried to book an appointment with the gp but need to try again tomorrow morning

Celiac hadn't been tested for. The pead just told us to go gluten free if we wanted to. Meaning we need to put him on gluten for six weeks if we want him tested.

With ds2, DH at uni and working full time and now me working evenings I don't particularly relish six weeks of screaming and hideous nappies. I tried gluten again about a month ago and started to notice the amount of 'tantrums' increased and he started waking up in the night screaming too

Some coeliacs can't tolerate gf oats (we can't) so maybe try cutting those out of the equation.

That's really interesting, thankyou for that

Dark rings under eyes be a sign of asthma.

If your DH is coeliac then I think it's highly likely that could be the problem. I'm amazed they've not tested for it.

My DS is allergic to dairy, soy and eggs and has had a few problems on and off for over the years. He's been tested every couple of years for CD to rule it out. I would speak to coeliac UK for some guidance, they're very helpful advising on tests etc

Massive typo, sorry. I should have proofread. Dh uncle is celiac

Ah ok. I still think it's worth speaking to them. Cross contamination is pretty tricky with CD. One crumb can cause symptoms. I was ill for weeks recently after a relative used my butter by mistake to make a 'normal' sandwich. I didn't realise for weeks and had been using it and was ill for days at a time until I realised!

Yeh DH cousin was saying. They don't have regular toast because they can't be bothered with two toasters. I'm going to call the doctor's tomorrow at 8.30 to try to get an appointment. Fingers crossed

Hello

My husband is a nutritionist and specialises in allergies. The first thing he tells his clients is to keep an accurate food diary noting any symptoms each day. This kind of diary for 1-2weeks will be invaluable when you visit an allergist or pediatritican.

The problem with allergies is that they don't always manifest individually but could be a result of mixed food groups - eg ok with wheat alone but not when mixed with dairy etc.

Start a food diary before you make any changes so that you know exactly where you're starting from. And absolutely push to visit a specialist!

Good on you for pushing and following your gut. You know far more about your baby than Doctors do so don't let them push aside your concerns.

If you can afford it, or borrow, or put it on a credit card, OP, I recommend a private consultation with a paediatrician or a paediatric immunologist. It will likely be less than £250, and you seeing a private clinician tends to put a rocket up NHS doctors - and you can see a private dr just once and then be referred back to the NHS for further treatment.

My DS was unwell for 6 months with chronic tonsillitis, but he had multiple secondary infections and viral infections as his immune system was so battered.

I borrowed £200 and saw a private ENT surgeon who was the first doctor to agree the amount and level of his illness was not normal. He referred me directly back to NHS paeds who did full bloods and a review, to make sure no underlying issues- they saw me the next day. The waiting list via my GP was 3-6 months.

DS was quickly given the all clear for genetic immunodeficiencies, it was simple but stubborn bacterial tonsillitis that just needed a longer course of ABs to be kicked- and he was well within a month.

Sadly, money, even a little bit, talks. If you can see a private doctor just once, I would recommend it.

We might have to borrow the money - I'll try my in-laws. Sadly we owe at least one years income worth of debt. The perils of being a low income family. I'm back at work and DH has started uni now so we're on our way up.

I really think you should pursue the NHS route, decent health care shouldn't only be available for people that can pay privately.
Keep on at your gp for a referral.

I think GPs can get a celiac test so ask for that, to 'rule it out'

Definitely bring a food diary, and a sleep diary.

Keep strong X

@holiday

Yes I agree completely- and it would have Nye Bevan turning in his grave- but I know from bitter experience that sometimes you have to put your principles aside, and “work the system”- and I can’t afford private healthcare either. I had to borrow the money. But I’d do it again in a heartbeat.

It’s your choice OP, no one here can tell you what to do- but best of luck either way

I agree

Just reigniting this thread. Ds2 I now just turned two and has been gluten free for around 14 months.

Two weeks ago we decided to pursue celiac testing so put him on gluten.

Hes now hyper, irritable, emotional, tired, sleeping lots,poor nappies and now has a double ear infection.

Time to up my game I think

money raising thread