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

(191 Posts)
Prusik Sun 19-Nov-17 13:24:08

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

furryelephant Sun 19-Nov-17 13:29:32

How much does he sleep on average? Does he eat well? Do you give him vitamins? I understand how worrying it can be when you just don’t feel your baby is right, my DD is almost 1 and I regularly feel like that. Have they checked to see if he’s anaemic? That would be my first thought!

calamityjam Sun 19-Nov-17 13:31:02

Can you list all of his current symptoms? To me, it sounds like allergy symptoms, but it might just ring a bell with someone as to what he could be allergic to.

Whydididothatfuckingthing Sun 19-Nov-17 13:40:27

Is he still on reflux meds? My lo is intolerant to all of them and had similar symptoms

Prusik Sun 19-Nov-17 13:42:33

My instinct is that he needs to have a formula that is 100% free of cow's milk but we battled so hard for this milk that I'm scared to cause too much fuss.

Symptoms

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

I dunno. A lot of it is just a baby being a baby but he just doesn't seem to be 100%. He's a cracking eater and good sleeper.

Jayfee Sun 19-Nov-17 13:48:18

I think in this case you should trust your instincts. Do you have different gps at your practice? If so, you could try a different one.There will be other people with more useful advice than mine.

debbs77 Sun 19-Nov-17 13:50:13

No advice but trust your instincts absolutely

glenthebattleostrich Sun 19-Nov-17 13:52:02

My first thought was allergy.

Is he on solids? What does he eat?

Prusik Sun 19-Nov-17 13:53:59

My GP surgery is in special measures so it's mostly locum doctors. They've been next to useless since the beginning to be honest.

The GP said to speak to the health visitor but they aren't medically trained. It's just been a fight since the beginning and I don't even know what to fight for. I'm the complete opposite of a fussy mum but something isn't right

Prusik Sun 19-Nov-17 13:55:28

He's on solids. We try to keep everything quite unprocessed and clean. Meat, veg, sweet potato, porridge, eggs, etc. The only things he has which I'd consider processed is bread/crackers/breadsticks

furryelephant Sun 19-Nov-17 13:56:00

I’d probably insist on a blood test with full blood count definitely, iron levels. That does sound a lot of sleep for his age, id say trust your gut 100% and ask for investigations sad

Prusik Sun 19-Nov-17 13:57:23

I'm convinced he needs to be 100% dairy free, especially with you guys saying it might be allergy related. His formula still contains cows milk. They only consider weight gain and nappy content to be considerations for milk allergy though,. according to my GP surgery

ownedbySWD Sun 19-Nov-17 13:58:05

Good luck, op. I would definitely look into allergies.

MrsStinkey Sun 19-Nov-17 13:58:29

Sounds to me like cmpi. I have 2 DDs with this. Ask your gp to change to a dairy free formula such as nutramigen 2 or nutramigen pure amino. I'd also be weaning completely dairy free and use oat or soya milk in your cooking for him. I really don't understand why it's such a struggle to get gps to diagnose cmpi and reflux and prescribe the proper meds and formula but it seems to be the same everywhere. We were the same with my DDs it's an absolute nightmare.

Prusik Sun 19-Nov-17 13:59:20

The problem is he's always smiling and cheerful when I go to the GP so they just say he presents as a well baby. He's napped 2.5 hours today so far and just looks exhausted

Prusik Sun 19-Nov-17 14:00:24

He's on nutramagen and has been weaned dairy free. both DH and I have medically diagnosed milk allergies also

Jenala Sun 19-Nov-17 14:03:28

I'm sure you've been on this website with a list of symptoms but sounds like allergy symptoms. Dark circles can be 'allergic shiners'.

I'd push hard for fully cows milk protein free formula and very strictly cut out all cows milk protein from the rest of his diet for a good few weeks and see if there's a change.

You say you're scared to cause a fuss but it's not like they will take away the formula he currently gets in retaliation. The worst that will happen is they don't give him the milk you want.

If that idea is stressful, since he is nearly a year, you could consider stopping the formula and switching to almond/oat milk? Just give him a good multivitamin with vit D and calcium in instead along with a good varied diet the rest of the time? If symptoms improve say over 4 weeks you could then go to the GP and say taking him off formula worked and they need to give you different milk? I know those milks aren't meant to be a main drink before 12 months but to be frank if he is cmpa then it's got to be better than keep having cmp and getting ill. A few weeks trial won't hurt him and could make things better for him. Dairy free milks are fortified too.

My DS is mildly intolerant to cmp and he hasn't had any kind of milk as a drink since 18m old. He didn't like any dairy free ones. He has almond milk in porridge and that's it. He's absolutely fine.

Prusik Sun 19-Nov-17 14:09:50

Looking at the list the symptoms do seem very familiar. Even some I've not mentioned, interestingly. I'm going to book to see the HV this week and try to get her onside

venys Sun 19-Nov-17 14:14:48

I know very little about allergies, but my sister used goats milk formula on her children. Can you try him on that without the intervention of a GP?

SomeBananasAreStillGreen Sun 19-Nov-17 14:18:02

Sounds exactly like my eldest was. He has severe multiple food allergies. It took ages to get him diagnosed, but it was life changing when we finally saw the specialist paediatrician.

Prusik Sun 19-Nov-17 14:20:52

You've all made me feel like I really need to kick up a stink.

SomeBananasAreStillGreen Sun 19-Nov-17 14:24:20

It takes an average of 10 visits to the GP to get a referral to an allergy specialist (according to the anaphylaxis campaign). If your GP won't refer you, see a different one.

It's hard, I know, but keep on pushing.

evensmilingmakesmyfacehurt Sun 19-Nov-17 14:25:40

Sounds like my DS before we were prescribed neocate as a milk. We had nutramigen to start and still had cmpa symptoms. I kicked up a fuss and refused to leave the surgery until he had a referral to the hospital and neocate.

He is now eczema and wheeze free and is happily weaned dairy free, now cutting down on the neocate and aiming to replace with soya milk once we get up the soya ladder.

Rheged Sun 19-Nov-17 14:30:04

I hope you get the answers you need OP. I would push for a referral to a paediatrician. I just wanted to address something you said upthread when you said HVs are not medically trained. They absolutely are. They are not doctors obviously but all HVs are qualified nurses who have gone on to complete additional qualifications in Public Health.

Prusik Sun 19-Nov-17 14:35:22

Ah, I feel bad for bad mouthing health visitors. Mine was amazing but always said she wasn't medically trained. I'm so gutted she's left because she was the only one on our side.

The pediatrician we were under was pretty old fashioned and pretty much said she isn't interested in allergy. Although she was absolutely amazing at supporting my son with his breathing problems

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