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reflux-be cautious of diagnosis

30 replies

kathj33 · 02/06/2006 20:45

I wanted to add a post to warn others who have little ones given this diagnosis to just beware,it may be more serious.
I have 11wk old twins who were born about the same weight, both about 7lb, both really good feeders and stayed identical weights until about 7 weeks old when they were both about 12lb.
Then one started vomiting. Just one feed a day at first, always the 11pm feed for whatever reason.When I say sick I mean SICK, projectile reaching a few feet away.

Mentioned it a few days later to GP and she completely dismissed it "babies are sick, I'm sure its nothing to worry about" I went away feeling happy if a little foolish for being overly protective.
Anyway vomitting gets worse and worse, a couple of times a day, 3-4 times a day until maybe one a day would stay down. I've now been to the doctor a couple of times again to be made to feel like I was wasting her time. The the docto was away, and I saw a locum who thought it may be pyloric stenosis so sent me immediately to the paed. assess. unit at the hospital. After keeping him there around 6 hours, when the amount of assessment involved having me feed him twice and watching him throw up twice, clearing the length of a hospital bed, they diagnosed reflux, sent him home with appropriate medicine and told me I'd recive an appointment in2 weeks for a checkup. 3 days later he was weighed at the clinic and he'd lost 11oz since the hospital saw him, just 3 days prior and wasnt keeping anything down, including the medicine. I phoned the hospital and they said the medicine would take 2 weeks to work and that I would need to go back to the GP if I wanted him to be seen again. Off to GP who reluctantly saw me at the end of surgery on the friday. Again told me he wasnt dehydrated so he'd be fine. She phoned the hosptal who said they wouldnt see him if he wasnt dehydrated but they would phone on the monday to see him. Went away in tears because no-one was taking me seriously. Health visitor camr monday and he'd lost anoth 5lbin a couple of days. Paed dept phoned and said they wouldnt see him till thurs. I begged them to see him sooner telling them about the weight loss but the refused. By this time little one is chucking up everything, I'm keepig him still for hours on end to try and make something stay down and he's really sleepy all the time and he hasnt smiled in a week when he was really smiley before, he hasnt pooed in 2 weeks . See the doctor the next day who says he'd not dehydrated and maybe I'm overfeeding him (I'm just trying to keep 3oz down him). She suggests 1oz overy 3 hours(!!!) and says ther's still no need for the hosptal to see himsooner than thursday.
Health vistor weighs him the next day and another 6oz down. Phone the doctor who again says he's just got reflux. He now wont eat at all, and is very very sleepy all the time.
Consultant sees him the next day, listens to symptons, looks at his tummy while feeding, and diagnoses pyloric stenosis and svere dehydration. He's rushed up to the high dependency unit covered in drips, tubes and monitors and drips for 5 days until he is stable enough to operate. Thank god he's now recovering, albeit very thin and weak, and pretty sore around the scar but he'll be ok.

I know I've gone on a bit but I really wanted to implore anyone out there with these symptoms or the same non-interest to put your foot down and not accept the reflux thing if your gut tells you its more serious. We very nearly lost our little boy because of this, a couple more days and he wouldnt be here From now on, I'll be one of those people who abuses the A&E facility as I've lost faith in the GP/referral system.

OP posts:
hub2dee · 04/06/2006 08:34
ghosty · 04/06/2006 12:01

Kath, I know exactly how you feel. Although DS, thankfully, only had to wait 36 hours before his op (rather than the 5 days you had to wait) that whole time was very traumatic for both of us ... I knew he was crying out of hunger but I wasn't allowed to feed him Sad. We also had the trauma of finding veins and when both hands wouldn't work, they tried his arms which also wouldn't work, then they tried his feet (binding them up with splints too Shock). The left foot wouldn't work (he still has a scar where they botched it up and it went septic) and when trying the right foot they said that the next thing would be his head Shock! Luckily that foot did work but it was awful for him and me ... I can still remember it so clearly and it was 6 and a half years ago ...
DS was a very miserable baby ... he cried an awful lot - to me it seemed like when he was awake he cried, even when he was changed and fed etc ... I found it very hard and demoralising ...
I had to go back to work when he was nearly 5 months old and on his first day at nursery I was convinced that they would phone me and tell me to pick him up because he cried so much - I was sure that he would go down in history as the youngest child ever to be expelled from an educational establishment Blush
He wasn't expelled Grin and they all loved him Smile ...

At the time it seemed to go on for ever ... but I have to tell you that it really wasn't that long ... by the time DS was 6 months old, sitting up and taking in the world around him properly he was a really lovely baby ...

I really mean it when I say to you that you need to look after yourself ... make sure you have lots of help and support ... talk to people if you feel depressed .... I was so knocked up after my experience that I feel I missed out on enjoying DS's younger baby days ...
I must add that we also had a meningitis scare before he was 2 months old so all in all it had been a hellish time - hence my trip down funny farm lane and the happy pills Grin. PND won't necessarily happen to you because of this but please be kind to yourself

{{{{{{{{{{hugs}}}}}}}}}}}

ghosty · 04/06/2006 12:09

I forgot the most important bit ...

YOUR DS KNOWS YOU ARE HIS MUMMY AND HE KNOWS YOU DIDN'T HURT HIM .... I PROMISE YOU THAT! Try hard not to put too much guilt into the equation ... which is easier said than done because we all know that motherhood goes hand in hand with guilt Smile

The things that happened to him in hospital HAD to happen to save his life .... it isn't your fault and he isn't blaming you ....

You need to give yourself and him some time to get over this ... give him lots of cuddles, GET lots of cuddles for you, ask your partner or a friend to take the twins for a walk for an hour so you can get some head space ...

I couldn't relax when DS was in the house crying and other people were looking after him ... so my sister or my DH used to take him out in the car or for a walk so that if he cried I couldn't hear him (obviously soon after he had been fed - not when he was due a feed ... that would be silly Grin) I would soak in the bath or have a sleep ... just to recharge my batteries. Most new mums need this at the best of times but when you have a screamer it is vital Smile

mears · 04/06/2006 12:24

kathj33 - I agree with Tissy's post earlier that you should ask to talk over your experience with the consultant. That way hopefully lessons can be learned. Alternatively writing a letter of complaint could help.

manitz · 04/06/2006 19:50

kath, my friend's first had neonatal transient diabetes from 0-6m (basically normal insulin dependent diabetes but goes away over time) and they had to do blood pricks and inject her on a regular (think 2 hourly) basis until she was six months old. they regularly tore the vein etc (imagine trying to get a small needle in a small wriggler) she's now six. I don't think babies attach blame, i just don't think they're developed enough at that age. she's got the same bond with her mum that her siblings have.

I know what you mean though, I even hated the innoculations causing them pain for whatever reason goes against natural instincts. And when you have been through so much with them it makes you so anxious.

I agree they all cry on dressing. don't worry about him, at least you know now why it was happening but it's over now and you can get on with enjoying your twins.

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