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

192 replies

Prusik · 19/11/2017 13:24

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

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Are your children’s vaccines up to date?
Prusik · 17/04/2018 03:45

It's hard to request a gastroenterologist at the moment because we felt we cut out all allergens. The nursery nurse said we'll form a plan on Wednesday when we sit down with her two colleagues so I'll take all of your ideas and see what she says. Thankyou all so much. In the meantime I'll pop to the GP with ds2 who seems to have conjunctivitis that isn't clearing. These boys!

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Prusik · 17/04/2018 10:53

Mum's coming up tomorrow to help with 3 month old while I chat to the nursery nurse and health visitors so that I can concentrate - ds2 is a proper velcro baby so the extra pair of hands will be useful

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Prusik · 18/04/2018 08:42

I'm so nervous. We're going to clinic today because we have an appointment with the nursery nurse and health visitor to check ds1 development, talk about his diet and sleep, etc. He's just gone for a nap. I'd like to bath him and scrub him to within an inch of his life so they don't think I'm doing a bad job with him - especially since he got calpol in his hair this morning. Annoyingly we're out of his shampoo. And I don't know what to dress him in. I don't want them to think we can't look after him because none of his clothes are new. Goodness knows why I'm so worried about all of this

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Abitlost2015 · 18/04/2018 09:40

Please don’t be nervous. They won’t look at those things. Their job is not to judge you but to help you. Tell them what you are most worried about, be honest and see if they have something to offer. Best of luck. I’ll be thinking of you.

Cutesbabasmummy · 18/04/2018 09:55

I'm so please you are getting somewhere. I have been following this thread for a while but haven't read all of it. Has anyone suggested keeping a video diary on your mobile to show what he is like when you are not at the doctors? Good luck today xxx

Prusik · 18/04/2018 11:14

A video diary is a good idea! I took recording after recording after recording of him screaming and whimpering in pain when he was three months to convince them to prescribe dairy free milk.

It went really well. She said he definitely sleeps too much. The ideas floated are - eye test (he has a squint/slight lazy eye), hearing test, bloods to check his levels and see a dietician. Hes also not out on any weight or height since early feb so need to get him checked in four months. Need to see the GP now.

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Cutesbabasmummy · 18/04/2018 11:20

Glad things went well Prusik! Keep going mama xx

Prusik · 13/05/2018 14:19

Back again. Really been struggling to get a GP appointment. Have to wait three weeks on average and then when I go they're always running at least an hour late. I try to be twenty minutes early to give me leeway with the boys incase of nappies, etc. So I've had to just cancel each time.

We've been giving bits of toast, crackers, etc as per the advice of the pediatrician. His nappies are rancid. They are sticky, make me heave and often explode. Saw the paed on Fri but he said that's ok as it's not happening more than once a day. We've now been discharged.

I've taken a picture of today's nappy to show the doctor. Any nappy experts out there? Am I allowed to add the picture on here?

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anxiousmumma12 · 13/05/2018 14:28

Oh bless you .
:(
How tough.
Anyone you can have look after your youngest so you can take toddler back to gp .
?
He sounds like something is bothering him and causing him to be tired to

Prusik · 13/05/2018 15:01

Youngest if ebf and still pretty unsettled. My main problem is having to wait 90 minutes for a bloody doctor's appointment Hmm

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anxiousmumma12 · 13/05/2018 15:15

Yes that's ridulcous.
I'm not sure what else I can suggest :(

Prusik · 22/06/2018 21:37

Back again. DS1 had his eyes tested this week. He has an astigmatism. Can cause tiredness, blurred vision and headaches. Might explain a lot.

Now for the hearing test next month

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MumOfTwoMasterOfNone · 23/06/2018 08:48

Your current symptom list sounds like our DD who has a cows milk protein allergy. She also had an unidentified allergy but this doesn't cause problems regularly.
It's taken 18 months to get where we are now and the hospital and consultant we're at is great. We had the same from the GP. I can't tell you how many trips we had to A&E in the middle of the night when DD had been screaming demonically for hours on end.
I hope you get sorted, I know how distressing it is.

MumOfTwoMasterOfNone · 23/06/2018 10:58

Sorry only read the OP Blush

Prusik · 10/09/2018 10:23

Back again. Thought I'd awaken this thread again as I'm really struggling with ds1 still.

Now 20 months and I've just found out from HV that he's on a care plan (not sure about the implications of this). He's started this past few weeks increasing the amount of sleep he's having again. 6.30-6 overnight and went back to bed 2 hours ago. So only 2.5 hour wake-up.

I'm at a loss as to what to do with him. Tried to get a gp appointment but apparently they're all 'on the day' now so I'll have to try tomorrow. My HV is going to give me a call for a chat.

He's gluten free since 11 months (massively helped) and dairy free from about 8 weeks.

His 7 month old brother sleeps less than he does!!

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mrbob · 10/09/2018 10:27

I feel like you need to see a paediatrician

Prusik · 10/09/2018 10:29

We had two appointments with the paed and then got discharged. He just wanted to talk about the herpes even though that's not what we were referred for. Then he wrote the notes up wrong and got a new job in a different hospital

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Sarahani · 10/09/2018 12:57

Have they tested for coeliac disease?

I would be pushing for that with the sleepiness. I felt totally exhausted and would drop off constantly before diagnosis or when I've been glutened. I literally cannot keep my eyes open.

When you say gluten free does that include all the cross contamination measures?

Cardiganandcuppa · 10/09/2018 13:02

I remember you OP.
I’m sorry he’s still struggling.

Remind me: did they test for coeliac?

I think you should ask to be re referred to Paeds and/or the allergy clinic.

UnicornSparkles1 · 10/09/2018 13:17

Goodness me OP, I just read your full thread. I'm so sorry that you're still struggling almost a year later. I hope you can get a GP appointment tomorrow. I would kick up a huge fuss and refuse to leave until you get a referral to a different paediatrician. Hugs to you xx

holidaylady · 10/09/2018 13:34

Oh gosh you poor thing.

Keep pushing, you know your child best.

Has he been tested for coeliac disease?

You sound like you are taking great care of him, and very informed about food allergies already.

Absolutely push for a referral to a gastro paediatric doctor. It's good that the nursery are agreeing with you.

FranticallyPeaceful · 10/09/2018 13:50

Definitely sounds like an allergy. Try to eliminate cows milk protein (also soy, very similar protein). Just tell your gp you want to try it, they can’t really say no so

NameChange30 · 10/09/2018 14:04

I’m so sorry things haven’t improved Sad
I think you should push for another paediatrician referral. You were unlucky with the first one but you might get a better one next time.

Fwiw the first paediatrician we saw was dismissive and rude but then we went back to the gp and got another referral, ended up with a different paediatrician and she was much better.

Ds hasn’t had half the problems yours has btw! But they have still done bloods to rule out coeliac and check various other things. We also got a dietician referral.

I should think your DS needs full bloods and allergy tests.

NameChange30 · 10/09/2018 14:06

PS I also suggest you look up the nice guidelines on CMPA, you could even print them and take them when you see the GP.
And check out the allergy UK website, their CMPA info is useful and they must have other useful info too.

Froglette16 · 10/09/2018 14:23

Eczema is how we discovered an egg allergy in my DC. He was 4 months at the time. Allergy testing is vital given the symptoms! Good luck.