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 think now is the time to go for that health insurance that I was planning. We can do it for the year and see what the crack is with that.

I think you've solved it... "Expert nutrition advice". I like it! Thankyou!

A couple months on and we're having massive sleep issues again. This is a prime example - put Ds to bed at 6.30pm last night and it's now 10.10am. he's still asleep. He woke for a quick feed at 6am but blatantly wasn't ready to get up.

If he sleeps 12 hours at night he'll clock up about five hours of naps during the day. I'm pretty sure 90 minutes of awake time at fifteen months isn't normal.

It's so upsetting. A pigeon landed in the garden yesterday and he freaked. How is he going to learn to walk and talk if he sleeps his life away?

Have you took him to a gp?
At 15 months mine could go from 7am-12 noon awake
2 hour nap then till 7;30-8pm .
Slept round to 7am

90 minutes awake is what I'd expect of a 6 month old

There's absolutely no way DS would stay awake until midday. He'd be having a full on melt down.

We saw the pediatrician early Feb who said "he looks fine to me". Have a follow up on about three weeks but I'm terrified they're going to say the same thing again. I just don't know what's wrong with him.

His three month old brother can happily stay awake longer than him.

Prusik - what a time you're all having.

I would also be worried about the amount of time he's sleeping and you're doing so well comping with a 3 month old too.

Can you push for a second opinion?

OP. If you can, go and see Dr. Neil shah
He is london based and private but will be worth it

I've called and left a message with the health visitor. I just can't carry on like this. I was told at six months that he'd start to sleep less. That's never happened.

I suppose one good thing is he'll only have one nap today so we can go out straight after breakfast. Breakfast which has been sat on his highchair tray waiting since 8am.

I just want to cry

@Neeenaw i really would go private but I just don't have that kind of money available. We're a low income family

Does he really need milk at all? I honestly don't know the answer to this question but I think if he's eating and drinking other things, then he doesn't need milk?

Shit OP, Im so sorry, the thread didnt appear full when I replied and i've now RTFT.

You poor thing. i am so so sorry you are going through this.

I wish there was a way to help, i'm not sure if theres any other way to access Dr. Shah. (Grrrr) im frustrated by how unheard you are. I just want to reach into my screen and hug you!

@Neeenaw thankyou. He's awake now. He's looking tired but cheerful. 10.50. epic lie in. We've had this for ages though. The nursery nurse said to me that if we got him sleeping through he'd nap less. It's literally made no difference

Prusik, the amount of hours he is sleeping would concern me. I would ask for a referral to a paediatrician and keep going to the GP until you have one.

Has he had metabolic tests?

Has he had metabolic tests?

This was my first thought too.

I've just read the whole thread. I am not clinically or medically trained but I am a medical secretary working in primary care.

I understand you cannot afford private healthcare, however, have you researched private consultants that also operate on the NHS? Oftentimes some of the best private consultants hold NHS clinics. You have the right to request a referral to any consultant; it doesn't have to be in your locality. I live three hours away from London and have referred many patients to private standard clinics on the NHS in London.

Also, and I don't want you to think I'm saying you haven't exhausted all options because I'm sure you're struggling, but private appointments really arent as expensive as many think. You could easily get a consultation and initial bloodwork done for £300. It isn't thousands like people tend to think. At this point, as a mother, I think I'd be borrowing from anyone and everyone to ensure I got to the bottom of this. I'm not advocatinggetting yourself into debt and I don't know your situation but is a credit card an option? I think if it was me that's where I'd be going.

Hi op,

I don’t have anything useful to add but after reading your threads I just wanted to say I really feel for you. Your little boy does not sound well and I really remember that desperation of knowing your baby isn’t right and no one believing you or taking it seriously. After having my dd I knew something wasn’t right, I had to fight very hard to be taken seriously. Her diagnosis was a very rare cardiac issue which meant her having surgery at 3 days old but I just really hear the desperation in your posts, you know something isn’t right with your baby.

Thinking of you, I wish I had something more useful to add

Sorry I meant to say that my dd’s symptoms were very different to your little boys. I’m not suggesting your little one has a cardiology issue, I just meant I really recognise the desperation of knowing your child is ill and no one listening x

i had a similar fight to you op with my children when they were little.

with ds i listed as you have written down, all his symptoms and i sent a letter with everything to the community pediatrician that was attached to my gp surgery.

is this something you could do? is there a community pediatrician? i found she was much more helpful than anyone else.

@Wellfuckmeinbothears I know you aren't saying my boy has heart issues but he did have a cardiology review at about three weeks old and had a clean bill of health with that.

All really good ideas, thank you. I'll chat with the health visitor when she calls me over the next few days. She's fantastic and on side.

I've had a couple of relaxed months where I though he was ok based on the diet changes we made but now I'm not convinced.

I honestly don't have £300 to my name. I go without food sometimes to make sure my eldest is fed and clothed.

He had blood works when he had his infection in Nov. Not sure what bloods were done but I will try to find out. Roll on the paed appointment in May. Hopefully he won't be as dismissive this time

Spoke to the nursery nurse today. Good news is she saw DS for his development check and flagged up some concerns then and also spoke to her in Jan to discuss his sleep and getting him to sleep through so she knows the history. She's pretty concerned and wants to see him on Wednesday at clinic along with a couple of her colleagues - one of which is my named health visitor. She wants me to do a food and sleep diary and thinks the paed should see him sooner than may and that they should do bloods.

Glad to hear you’ve made some progress

I have only just seen your thread.

It sound to me like you might have several things going on here simultaneously. The sleeping and the food/allergy issues. I think because you had a cardiology all clear at 3 weeks, you are ruling that out as an ongoing possibility. I think that it is not something you can rule out. It is very difficult to detect anything in a 3 week old and there could have been something incipient at that stage that has now developed. I think you should get another full cardiology workup with ECG and Echo (the echo is very important).

I also think you have some food issues going on, whether it is coeliac or straight allergy, single food or multi, or other digestive issue you need to get to the bottom of that too.

I can completely understand that when you turn up at the doctors, he is bright eyed and completely counters your story of how ill he is, but doctors can only go on what they see and hear from you. So you need to change how you are feeding them information. Start a detailed diary of every day. Note what he eats and when he eats it. When he sleeps, when he wakes, when he cries and for how long, bowl movements, playtime etc etc. Then separate the sleeping stuff into one document and the eating and crying stuff into another. (While having the whole thing together as a back up) organize them so they are easy to read the key info (hours sleep per 24 hrs etc)

The next time you see a doctor, take your records, put them down on the desk and insist that they are looked at properly. Say you are not leaving until you have a pediatric cardiology referral (not just regular cardiology) AND a pediatric allergist referral. If you can do your homework before and tell the GP the names of the specialists you wish to see, even better.

You may find that with facts and data, things change. Keep on pushing. Mothers instincts are rarely wrong

While doing this, try and rule out a few environmental allergens. No contact with animals, dust mite encasements on the mattress (bin bags and duct tape will work if you can afford the shop ones) and no sheep wool clothes for you or DS (or lanolin containing moisturizers)

No advice from a parent POV but I had some complex and weird health issues stemming from a blood disorder that have taken years of persistence to get anywhere near being on the right treatment for. And I am an adult who can articulate what’s wrong- it must be a million times worse tying to advocate for a baby who can’t speak. You need this care to be more joined up because at the moment it’s a case of all these weird individual bits and pieces and a general overview of everything is what you need and really, a GP should be able to help you with that. Good luck.

I really feel for you because your DS is clearly not well at all but you have been pretty consistently fobbed off by the GPs and even the paediatrician

Firstly, it sounds like the paediatrician is a generalist, and I think you need to see a specialist. A paediatric gastroenterologist or allergist. Can you go back to the helpful locum GP and request a referral to a paediatric specialist? Do your research and find out exactly who you need to see, then you can request the referral to them specifically.

I also suggest that you look up the NICE guidelines on suspected allergies, print them out and take them to your appointment, along with your food and symptom diary (you should be doing one). Write down what you want to say if that helps. And don’t give up!

Good luck

I have absolutely nothing constructive to add only that I give you utter empathy, you must be at the end of your tether.

All I can say is push for the specialists.