A moan- sorry

[strawberrycake]

My son has been waiting ages for help with his eating. At 6 weeks he stopped gaining weight above the odd ounce here and there (hate to say this but this is also when I stopped expressing as milk dried up). He went through weeks of diarrhea and pain and was finally prescribed soya and referred to pediatrician. Soya has slowly got worse and worse over the 5 weeks he's had it, now he's so constipated he's in pain. I've given him normal formula to relieve the pain as it's not fair on him. He's now got a rash all over and is developing ezcema (doc given cream today). I've just found out he's got appointment with dietician in early November when he'll be over 5 months! It's just not fair on him to go from 6 weeks to over 5 months with all these feedings issues. I had to wait ages for docs, then over a month for pead and now over a month for dietician, 3 months in total just to sort out bloody milk. I know there's a list of children waiting but he's waited nearly 3/4 of lifetime to see someone about this and I wish they could hurry up. Annoyingly according to the receptionist he could be seen a little earlier except the head dietician at the hospital wants to see him herself and her waiting list is a month longer! I rather he just saw anyone in the department a month earlier!

Yes, it would be galling to put in all that effort only for it not to work out. It does make me cross that the support for BF is so poor, when for so many people it's such a big deal. Grrrr.

Anyway, I am really pleased you got your referral and let's hope they have the answers you need!

Oh I am really pleased you got the referral. hang in there it will get better

Well night from hell here. Been in A&E for three hours to be seen for three min.

The rash really changed today, much darker and spread over most his body including his head. Also his bits looked swollen. I decided enough was enough and as GP closed took him to A&E. Refusing feeds again, not slept more than half hour blocks as uncomfortable and coughing and choking himself awake all night.

Awful experience and one I won't repeat. I got the feeling from the word go that they they thought it wasn't serious enough to warrant him being there. Ignored a lot and no help. Left for the first hour to stand by a desk holding ds until I thought my arm would fall off. Then seen by a nurse (in the store cupboard!), quick glance said not menigitisis and bits not swollen (well they are). Then told to wait outside in general waiting area. Left there for over two hours, popped in twice to see if they had a rough idea of waiting times as I'd at least walk him around. Treated like an annoyance. Husband got wound up and argued with nurse after we'd been waiting 3 hours, who told us it was something he could go to GP for (he has, plus they not open and rash had doubled in an hour) basically saying that why we had waited so long as they 'had sick children to see. I would have just gone home if I knew they had this attitude towards him. Literally EVERYONE was seen before us until waiting room empty, from 10 years olds with sprains to grazed chins and people arriving much later. If they didn't want to see us fine, it was the three hours with no info or interest that did it. 3 hours in a waiting room with a sleep-deprived 14 week old with sore skin is NOT fun.

I said we'd just leave, partly to keep the peace and partly as they clearly were no going to be interested anyway. Then suddenly said he'd be seen.

Just as I expected, said it was a viral rash and he was fine. No interest in milk issues. Asked them if it was viral should he be kept away from others (logical?) and they said it was 'my call' as it might not be viral!!! Over and out in a few minutes. Considering his weight gain history I was surprised they didn't even weigh him.

Really upset and depressed by the whole experience. Been 4 hours of misery for us all.

I really felt they were making a point not seeing us and keeping us waiting. All raised eyebrows and 'first time mum?'

What an awful time for you all.

Hope you get some sleep tonight.

How horrible for you. Absolutely awful. I can't believe they triaged 10 year olds with sprains above a 14 week old baby. I really don't know what to say.

I think I would consider making a complaint.

Anyway, that's not going to help you in the interim. Do you have a different A and E in the locality you could try? If you think there is something really wrong, trust your instincts and take him there.

I really feel for you.

Oh my god. The NHS is not covering itself with glory here is it? How horrible, and I can't believe that they triaged almost anyone above a 14 week old baby.

I think i would make a complaint too.

I agree is there a different A+E? Where are you based, or local A+E is wonderful here. Could you get an urgent referral from your GP (mine can check you into paed A+S from their surgery). Can you afford to go private for the dietician?

I was in with a viral rash in DD when she was smaller, she was fine in herself but the rash spread. I was NEVER made to feel like a time waster (in fact they wanted to keep her in over night) and have been told many times they'd rather see 1000 children with viral rashes than miss one case of meningitis
Complain!

I've had a referral from GP in the past as he was so concerned about ds, diarrhea and soft spot down. They weren't that much better, saw him quicker but unconcerned.

They were very aggressive. Ok dh was arsey, but he didn't shout/threaten or anything bad. He said 'I think it's outrageous we've been here three hours. We're going home and frankly I consider you to be negligent.' Used a firm tone, but did not scream and was not within 5 metres of anyone to threaten with body language (his body language was simply heading for the door). They BOTH then jumped up after him shouting back. He was out the door, I wasn't and nurse turned on me with 'don't you realised we have very sick children here blah blah' I calmly stated that if she wanted to reply to my dh could she reply to my dh, not me as I hadn't said anything! The other one opened the door to yell after him about 'have you used your GP?! We're NOT negligent, you are, etc.'

They basically poked him and rash went (this was an hour after arrival) and checked temp and then from that point was a bother, even had to wait in the main waiting area, not children's area. I hadn't said anything or been anything but polite. Just go the usual 'is it your first...'

We only got seen as I went back in alone and asked again as whatever I felt like wanted him checked. Must admit I nearly cried. So embarrassing. They were nicer then, but more like your nice to a loon.

I don't feel like taking him anywhere tbh, wherever I turn I get crap it seems. All it causes is him distress of waiting around and me distress.

What's dumb is you get hv at one end saying he must be seen and worried, then as soon as you do what they say and take a baby anywhere you're treated like a fuss-pot for bringing them. Even if you're only there as someone (GP) sent you and you weren't going!!!

ARGH

I do kwym, I had the nurse practitioner, saying no doubt it's just a viral rash but just to be on the safe side I'm sending you to the Gp, the gp leaping to her feet and telling me to get that baby to the hospital within one hour, and then the hospital being not-overly-concerned (but very attentive)

strawberry I second the others about going elsewhere, I know you don't want to set yourself up for failure, but I hope that there is a good hospital somewhere in the UK.

Can't you happen to be somewhere on holiday or away for the weekend? Where do your parents of ILs live?

The only family with have in the UK live 2 miles away! If it gets worse there's another place in the other direction but further.

I already have him seen for booked appointments elsewhere thanks to GPs recommendation (long bus ride across North London but worth it). SUCH a different attitude. Even when pead thought he was fine in general she was REALLY nice, referred to dietician and they're also so open, I am CC'ed all info they send to HV/ GP about him which I like. She even put in the letter to GP that if anything changed regarding him she'd also be happy to see him again. Not this attitude of 'he's not dying right now so why's he in front of me?' They also have a roughly 2 week wait rather than 2 month wait for appointments. They're the ones who've squeezed him in after a clinic to see him earlier.

Have you tried a goats based milk, or been on the allergies board? Sounds like if you want A&E again you should go there, know it's a phaff

Only until Thursday now to wait for appointment. I can feel his ribs again and he's like sandpaper all over, but very happy and alert thankfully.

good luck for tomorrow

So that appointment went well, and talked about importance of review in 4 weeks. Reminded this is important.

So ring to book, nothing available until end of Nov. Have to take it.

Then I get an answer phone message later that day saying it's urgent, and must re-book sooner.By the time I get it (half hour later, was on tube) receptionsist gone.

So I ring reception back today, to be told there's nothing earlier than end of November

bangs head against wall

strawberrycake this is not fair and not right. You need more support here from the NHS.
www.gmc-uk.org/concerns/making_a_complaint/faqs.asp
Is there anything here that might help? Sounds like it would be at the hospital itself to make a complaint about this.
The other option is to go in there and see receptionist and not move until you have what you want - an appointment in 4 weeks time. the doctor should be there so you can make receptionist go off and see doctor.
Just keep pushing. Have you got any friends/family who can go with you?
You sound sooo much saner than I would be in your position. Honestly, properly strong and amazing. he's a lucky little boy to have you.

Pomme-I feel like I can't be so calm much longer. No reason, but I feel like today is the day I feel like cracking up a bit. He's now sleeping something silly like 20 hours a day at 4 months, he can't be getting enough inside him. Today he's slept 7.30pm until 9am (one wake and feed) then 10-11.30, 12.00-now. I feel like crying, partly out of frustration, partly because he's my little boy.

The doctors in on Thursday, so I'll ring then and insist to speak to her. In the meantime I keep ringing the GP who say the prescription hasn't arrived in the post from the appointment for the new milk.

AND I'm really really livid/ upset today, he's had such a bad few days. Rash flared up again, diarrhea, sleepy. I can't work it out. Then I just found out the jabs he had on Friday contain a dairy product. Told at the time it was 'heat rash' (in this weather?!). I would like to be informed about these things. I don't know if there's a link, but expect to ale to discuss these things. Tetanus jabs apparently contain casein.

Wow, you'd thing that this would be mentioned at jabs as your lo isn't the only baby to be allergic to CMP/dairy. or at least checked against their notes...
The prescription hasn't arrived in the post?? I've never heard that one before. Can they not just write one out for you to collect and go to the pharmacy with?
I'm so sorry you had a bad time at A and E as well, the two girls I know who went to A and E got seen ahead of everyone else (babies roughly same age) and had a follow up call the day after. We're not in London - I had a friend round yesterday who does live in London moaning about GPs and appointments and how bad/hard to get they were.
I am also not surprised you are on the edge. it must be really worrying. Maybe another GP appointment tomorrow? Can you get the HV to help you out? If you call them they should come to you and might be able to pull some strings/at least offer advice?