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

Could it be celiac disease as you say he has bread products sometimes too? I would go and totally exaggerate his symptoms (not that they need exaggerating but sometimes it's the only way to get docs to actually bloody listen) and I insist on a referral to a peadeatricin. Then push for allergy tests.

Spent the last 24 hours with next to no sleep. Currently running a fever of 39.7, although calpol and nurofen are managing to bring it down.

I dispair.

I'm so fed up of having a sickly baby. I'm not strong enough for this

In fact, must be 36 hours as it's been two nights now

Hi
I had a very sickly baby that no doctors took seriously. It cause dus years of anxiety and sleepless night and worst of all, him years of agony and Failure to Thrive.

A child at DC's school had really severe aneamia caused by allergy to cow's milk and one of her symptoms was dark circles under the eyes. Have you tried going completely dairy free? And at this age, can you not wean him entirely onto other foods?

Really feel for you OP. It's a horrendous enough time when a baby is severely ill without being treated like a time waster.

Yet another vote for non IGE mediated allergies. He might well be coeliac, but also might have slow allergy to gluten/other allergens like egg, soya for example.

You need an appointment with someone who really knows what they're talking about - it takes a LOT of pushing within the NHS. Health visitors and community dieticians won't be able to give the expertise you need. I'd really strongly advise finding an expert consultant and dietician and at least paying for an initial appointment. In our (v extensive!) experience, it can take a long time to pick up all the child's allergies, as you can't test for non IgE, so you need to make sure you're seeing someone really knowledgeable from the off. Please do PM me if you want any recommendations - one of my DC was very ill for 3 years before diagnosis with her final allergy, and I now have an A team in place ;-)

PS you need referral to a paediatric gastroenterologist who has a good overlap knowledge on immune/allergy issues. Allergist won't necessarily know enough, nor will standard gastro team. I echo not going to a generalist paediatrician... they'll probably not be much use.

@davidbyrneswhitesuit this sounds really neglectful but we really have no funds in place to begin to pay for medical care. We really are a low income family and although not on the breadline, are living month to month with nothing left over

Aw lovey, that doesn't sound neglectful in the slightest....all it means is that you'll need to do a bit more pushing to get the right support within the NHS. I'm so sorry - I posted a bit quickly and it may have looked as if I assumed private was feasible; I didn't mean to convey that assumption. Like you don't have enough on your plate already

I would suggest looking in detail at the NICE guidelines for non IgE mediated allergies, highlighting all that apply to your son, and taking it to the GP - he's certainly ticking enough boxes.

He looks as if he might well be a candidate for consultant referral, as it sounds as if there's a strong indication of multiple non IgE allergies going on, but at least if you get the GP to work within the NICE guidelines, you should be able to access dietetic support.

Guidelines are here: www.nice.org.uk/guidance/cg116/chapter/1-guidance

Don't be ashamed to push politely as hard as you can, and don't think you're imagining it - sounds like you're spot-on.

Do pm if I can help with any further info!

Is it worth photographing / videoing him over a series of days or even weeks when his symptoms are bad to demonstrate to the GP that it's an ongoing concern not just an occasional off day?

@davidbyrneswhitesuit thank you for the support. I think allergies are likely. His Dad is intolerant to egg and has milk allergy, I also have milk allergy. We generally try to eat pretty clean - I'm quite sensitive generally to foods and get 'shiners' pretty quickly if I don't eat well.

I might need to start a diary - good idea. There's definitely a catalogue of doctors appointments but I only take him when I'm no longer comfortable with the wheezing so they don't exactly get to see a full range of symptoms

So disheartened. The doctor said he has two infections. Roll on my appointment with the health visitor tomorrow

Oh no

Hope he is on the mend soon and the hv is helpful x

The HV was lovely but it wasn't really a very positive appointment. She as concerns about DS's 'social and emotional development'.

I've been to the doctor's with DS this morning as the infection on his hand is getting worse. We've been given oral antibiotics and he thinks we might need to go into hospital to get IV antibiotics.

I'm just so disheartened. I feel like DS is missing out because he's constantly ill. I told the doctor this and gave him my list of symptoms. He's going to refer us to see a pediatrician - no doubt he'll be given a clean bill of health.

I just want to cry

His social and emotional development will be under par because he feels like shit, your poor little guy.

I could cry for you. It's so, so tough. It doesn't get any tougher. I'm going to PM you now.

Hi prusik I think the paed referral and what the HV said are both good in a way because a) your HV also has cancer so it isn't just you and b) the paed will be a lot more clued up about what it could be than the GP so is likely to investigate more.

There are so many things it could be but definitely trust your instincts. My DS had CMPA (luckily grown out if it now) and had to be totally and utterly milk free for a few months before I got any help. The GP was useless (D'S was also 10 months).
If you do suspect CMPA I would try giving him oat milk with calcium and be very strict about milk/soya for a week, see if there is any difference.

Chin up. It will get sorted and you are doing a great job for him

Cancer, wtf phone. Concerns. So sorry about that

OP you can buy most of the formulas mentioned on this thread over the counter... Could you afford to buy 1 tin and just see if it makes a difference whilst you wait to see a dr? If it works they could then give you a prescription

I'm just wondering whether anyone is able to add any info on private healthcare insurance? I've looked into allergy testing and I'm not convinced it's going to thorough enough to actually work out what's going on. My latest plan is to arrange private healthcare insurance which looks to be around £50 per month for all three of us. Maybe then they can arrange bloods to check things like vitamin D levels, etc to come up with a true diagnosis?

DS is currently suffering from 3 infections and has dropped 1.5kg in three weeks. Considering he only weighs around 10kg anyway, that's a significant chunk of his weight

£50 for all three of you per month? .... Why not just pay for a private allergy test with a provider like Spire. Just looked up the private prices for our children's allergy consultant (who we see on NHS) and they change £150 for skin prick testing then £150 for the appointment with the doctor. Or if you see the allergy nurse is £175 for consultation and skin prick test.
You could then get seen by the same consultant on the NHS after the diagnosis of it does turn out to be allergies

Oh just re read your post, maybe skin prick tests wouldn't work sorry

Whatever you do, don't make any dietary changes at the moment. They need to be able to test for allergens and they won't show if you've removed it from his diet. My granddaughter never really thrived, always poorly, run down, caught everything going. She really went downhill at around 18 months and luckily our GP was on the ball, tested for coeliac disease and got DD a quick paed referral. Within weeks of being diagnosed and dietary changes, she was a different child. But they were very insistent not to change anything at all, as the tests would be inconclusive. It went totally against your instincts but luckily her bloods alone showed a high enough level of reaction to avoid a biopsy under sedation.

DD looked into a private paed consultation, it was around £250 to see one for a 45 minute appointment but luckily she was seen in around 3 weeks on the NHS and her care has been outstanding to date.

If your gut is telling you something is wrong, then don't be afraid to listen to it

Most insurance companies won’t take on existing illness so they’d not be any help. Unless you have a company scheme some disregard previous but you’d probably have. A big excess -might cost the same just to see the doctor privately

I'm a GP. I'm sorry you've had a hard time getting help for your DS.

First don't take out insurance to cover this- as above they won't cover pre existing conditions. It's good you've been (NHS) referred and I know not all general paediatricians know as much about allergy as allergist specialists/ immunologists/gastro paeds with an interest in allergy but it's still a start. Lots of general paediatricians know plenty. (even some GPs do too!) The problem with paying upfront for a private opinion when it would be a struggle is that they will need to then do tests privately which will be more money.

I think it's likely that the GPs you saw before were focussing only on the presenting illness- (wheeze, cough, eczema etc) not the bigger picture. Not an excuse but in 10 minute appointments it's important to look at the most pressing problem (to the doctor if serious illness like pneumonia possible) 1st.

While you're waiting for a paeds appointment there may be more that could be done to help/investigate. I can organise bloods for babies in the community so could check for anaemia and coeliac disease. Maybe your GP can too. Also as above there are other hypo-allergenic hydrolysed formulas that you could be prescribed- we have clear local guidelines on these. Yes we are generally mainly looking at CMPI when 2 systems are affected- i.e bowels and skin but there are always exceptions to all rules in medicine. Finally your GP or HV can probably refer you to paediatric dieticians while waiting for paediatrician as any baby on the CMPI pathway gets referred where I work.

I agree a food diary is often helpful. I would probably exclude soy while waiting for assessment unless you know the assessment is quite soon. I agree it can make allergy testing harder but given your story and family history it seems quite likely and it may help him.

So I would suggest trying to see the same GP again to discuss bloods, other formulas and dietician referral. If they have no appointments (sadly standard for most of us now) and your son is not more unwell ask for a phone call.

All the best.