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reflux-be cautious of diagnosis

(31 Posts)
kathj33 Fri 02-Jun-06 20:45:41

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.

SecurMummy Fri 02-Jun-06 20:55:50

Kath, what an awful story, this must have been so hard for you to go through

I can't think of anything useful to say sorry

katiebl Fri 02-Jun-06 20:57:15

Oh sweetie it must have been terrible for you and your family to have gone through all this. I hope your son recovers well. JUst to say I am thinking of you and your boy.

tissy Fri 02-Jun-06 21:02:26

kath, this is a dreadful story, BUT you saw a Locum GP who was right, and were then sent away by the paed assessment unit. Your own GP , believing what the paed assessment unit told them, then continued to diagnose reflux...

I think that the paed assessment unit made the biggest mistake really. It is likely that even if you'd sat in A+E you would have been sent there, and maybe sent away again!

I suspect that the doctors in the paed assessment unit were relatively junior and inadequately supervised, so perhaps didn't realise how significant the wrong diagnosis can be .

Presumably you'll be going back to see the Consultant for a check up, so why not discuss it with him/ her and ask how they propose to ensure that the mistake is not repeated on someone else's baby?

CarolinaMoose Fri 02-Jun-06 21:12:49

what an awful thing to go through . Glad your little boy is recovering now.

I agree with Tissy, it's definitely worth a complaint to the consultant, maybe an official complaint in writing too.

kathj33 Fri 02-Jun-06 21:25:11

Tissy,
Yes it was a SHO who saw him first in the paed unit but then a registrar a few hours later.[at one point the SHO was the other side of the curtain searching Google for what it could be, gets better and better doesnt it?]
I'm not alone though. Little one was moved to a different hosptal by ambulance the day after he was admitted - to the John Radcliffe in oxford who are fantastic, couldnt fault them at all - and one nurse told me that its all too familiar, ours was a very severe example, but most babies who have the operation are very poorly just because doctors far too easily put it down to reflux and it takes being very ill for something to be done. So unfortunately the consultant I'll see will be in a different hospital to where the errors were made. But a letter will be forthcoming to the hospital in question and I'm changing GP....

gigglinggoblin Fri 02-Jun-06 21:29:33

ds1 was at school with twins, one of them had pyloric stenesis when he was a baby, his mum had to fight and fight for the gp to believe it was anything serious. he is now a happy, healthy 7 yo. i was also at uni with a girl who had it, she had an interesting scar on her tummy which she liked to show off but no other ill effects. hope it helps to know that others have come out the other side. sending {{{hugs}}} i know how awful it is when you have a seriously ill child. well done for getting through to the docs in the end

PanicPants Fri 02-Jun-06 21:34:09

How terrible for you. You should def. complain, but thank god you lo is alright now.

tissy Fri 02-Jun-06 21:40:23

pyloric stenosis isn't all that common, though. The surgeons at the JR will have seen loads of cases- and of course being surgeons they don't see the hundreds and thousands of sicky babies that GPs and paediatric SHOs see every day. These obscure the picture and can lull you into a false sense of security.

Even the paed registrar may only have seen a couple of cases in his/ her training.The problem was that you weren't seen by a consultant on that visit.

In our area at present, there are three hospitals that deal with sick children/ babies. Two DGHs and a maternity hospital that has a neonatal unit/ scbu attached. There has been a move to amalgamate the three units, so that ALL sick children are dealt with on one site, so that the Consultant on call doesn't have to split him/herself three ways, and so the paediatric trainees are adequately supervised. There was a HUGE hoo-ha in the local press alleging "swingeing cits" and "cost-cutting measures" and people seemed to resent the fact that they may have to travel another 15 miles for infinitely superior care. Luckily the Trust forged ahead with the plans inspite of the noise, and the new unit opens in a couple of months

CADS Fri 02-Jun-06 21:54:35

God, this is awful and terribly shocking. So sorry you and your lo had to go through this.

You have every right to lose faith in GPs, I did a long time ago for something a lot less severe. I don't feel so guilty now for, occasionally, taking my los to A&E, if I'm not convinced the GP is right. I remember mentioning my lack of faith in GPs to my HV who agreed that it best to follow your own intuition.

The sleepiness should have been a clear sign that your lo was dehyrated. I suggest when you get over the shock that you put a complaint in writing, because they have caused your lo unnecessary pain and both of you alot of upset.

Hope he makes a speedy recovering.

XX

manitz Fri 02-Jun-06 21:58:12

i'm really shocked and hope your baby is recovering well this sounds like a really awful experience. My kids didn't put on weight (though didnt' lose it like your son) and i foudn that I was forced to the hospital and made to have numerous tests. Ultimately there was thankfully nothing wrong but it was a very stressful time, had they also been losng weight at that rate and had medics not referred me i would have been totally overwhelmed. Well done for getting it sorted.

BTW I wasn't ever really ill b4 having dds so didn't have ny contact with docs or hospitals. Now I have I realise I will always have to question advice as they all say somethign different and treatment/theories vary so much. Like you I have no faith and now direct gps to do what I want rather than ask their advice. Just think there's too much out there and they tend to be good at the bog standard rather than rare cases.

notsoladyjess Fri 02-Jun-06 22:00:29

you poor thing.

my ds2 had reflux and even though my doctor is completly crap the first thing she said was pyloric stenosis and they kept an eye on him to make sure it was not that.

it is hard though as you have to follow your instincts but i am not at all medical so i do rely on doctors when it comes to the health of my kids.

hmm.

CADS Fri 02-Jun-06 22:04:49

Yes, I must say that when ds was diagnoised with reflux by a JUNIOR paed, the first thing he investigated was pyloric stenosis.

hub2dee Fri 02-Jun-06 22:09:36

kathj33 - so glad you persisted and eventually got this sorted. Sounds like it ran on way too long with all the toing and froing and lack of properly informed people. How frustrating for you and ds. The progression of vomitting (starts occasionally, builds up to all-the-time); lack of poos, projectile nature etc. is in all the descriptions of this condition, and as you say, had this gone on things would have become very much more critical. Hope the recovery is swift !!!

mathilde Fri 02-Jun-06 22:22:44

gosh kath thats awful for you. I think the dr was incompetent. My DD had signs of reflux/vomiting pretty severely and our city hospital did a routine 24 hr pH test involving tube inserted thru mouth and resting at top of osopheagus to monitor how much acid was there. Not pleasant but no pain once sited and has conclusive results. Think your ds should had this straight away especially later with that weight loss. Also had barium swallow there to rule out hernias. Was none of this done ? Am appalled !

ghosty Fri 02-Jun-06 22:39:14

Kathj33
You poor thing ...

This is the first time I have come across someone on Mumsnet who went through an identical thing to me ....

I was made to feel like I was a neurotic mother when DS started vomitting at 11 days old. I phoned the hospital midwives and they told me that because he was over 10 days old he wasn't their problem . My GP said, "Babies are sick Mrs Ghosty, it is called possetting!". My HV saw him projectile vomit when he was 3 weeks old and said, "Oh dear, that is rather a lot isn't it? It must be severe reflux". Another GP gave us baby gaviscon to 'thicken the milk' and all DS did was projectile vomit porridge. He was so poorly and I was beside myself. No one believed me and I felt I was going mad. Everyone said it was normal and I remember thinking, "If this is normal how does anyone have more than one baby?" I used to breastfeed him over the bath or the kitchen sink because I knew he would throw it all up as soon as he was finished. He cried all the time because he was always hungry and was only quiet when he fell into an exhausted sleep. It was the worst time of my life and just thinking about it makes me cry .
Eventually, my mother (who was a midwife a 100 years ago) took us to her GP and insisted that DS was looked at at her local hospital. Even then it was a nightmare because the young doctor on at the time said it was so rare and so very unlikely. They sent us home too. This was only a couple of days after Christmas and they were very short staffed. That night, my 4 week old DS slept for 16 hours without waking. He was very ill and exhausted. We went back to the hospital the next day and they agreed to weigh him - he has lost 2 lbs since birth and was severely dehydrated. He had a scan and the radiologist said it was Pyloric Stenosis. We were blue lighted to Southampton General Hospital and DS had his op the next day. The relief was unbelievable!

Unfortunately the experience sent me into a spin and two weeks later I gave up breastfeeding and by the time DS was 8 weeks I was on a high dosage of Anti depressants .

You need to know that my DS is 6 and a half now and is a healthy fit lad who eats like a horse and has maybe been sick twice in his life (apart from the PS vomitting obvously!)

I know what you mean about losing faith in the GP system ... I stopped seeing my GP after he said to me "Oh, yes, Pyloric Stenosis - I could see it was going that way!" Bastard

My thoughts are with you Kath, you have been through and awful time and thank god it came out good in the end. Your little boy will have a scar to show his friends when he is older and he will be all the more precious to you for this experience ....

Hugs to you from me {{{{{{{{{{{{{{}}}}}}}}}}}}}}}

kathj33 Fri 02-Jun-06 22:48:02

mathilde
nothing like that was done. The assessment like I said was just feeding him and watching him throw up, and a feel of the tummy.
That was literally it. Your hospital sounds like a good place to have kids seen

hub2dee Fri 02-Jun-06 22:54:03

Wow ghosty, similar incompetence, eh... sounds like you too had a hard time of it. Glad he's now fighting fit !!!

kathj33 Fri 02-Jun-06 23:01:39

Hi ghosty
God my eyes are welling up reading your story, I felt so helpless through it. Just wish I'd known about this website back when he was getting ill, I've just discovered it and it would have been such a comfort knowing others had been there and done it and come out the other side.
We had the gaviscon thing but I took him off it after a few days as the sick was like cottage cheese and considering he was sick in bed every night I had visions of him choking on it.

I really appreciate knowing about the success stories, having been through the worst 2 weeks of my life.
It sounds funny breast feeding over the sink and I'm sure in years to come memories of feeding ds in our underwear to save washing will make us smile
Would be great to keep in touch with you as he recovers
xx

mathilde Fri 02-Jun-06 23:05:03

my dd did have v.severe reflux as it turned out, not ps, forgot to say that. I tell everyone i meet about recognising reflux in their own babies as it took weeks of me pestering our GPs and 2 other hospitals who just turned us away time after time.(felt like neurotic mum)! In the end i rang a well recognised paediatrican direct who was wonderful and basically saved her life! Am like mother tiger with all gps now ! Scary stuff with tiny poorly baby. Hope things are much better for you now

ghosty Sat 03-Jun-06 06:13:44

Kath, of course we can keep in touch

I know of 2 other people who have had this condition. One is a friend of my husbands who was operated on in 1970 ... his scar is one to behold - he looks like he was involved in a fight with a machete ... When he showed me his scar I was so pleased that medical science had come on to a point where DS has a scar about an inch and a bit long - a bit above and to the left (as you look at it) to his belly button. The surgeon who did it told me that some surgeons perform the op through the belly button for cosmetic reasons but he preferred to not to do it that way because it would mean a longer 'journey' inside to the pyloric muscle.
Another is the eldest son of a lady I met at DS' swimming lesson the other week. She noticed DS' scar and asked me about it. Her son is 9 and is fit and healthy . We had a long chat about it and compared experiences and scars . Lucky for her she didn't have the problem of convincing everyone ... her DS was born here in NZ and the problem was picked up very quickly due to the policy of continual care they have here - you have one midwife throughout your pregnancy and the birth and then sees you and the baby for 6 whole weeks after birth - fantastic system! I had DD here and I can't tell you what a difference it made having the same midwife for that length of time ... not that DD had the problem but anyway YKWIM!
One of the reasons they didn't believe us was because DS was so young when he started vomitting (11 days) and usually the problem doesn't manifest itself until a baby is nearer 6 weeks old (like your DS) but the surgeon thought it may have more to do with the baby's weight ... DS was 10lbs at birth and 11 and a half lbs when he started throwing up ... so that fits with your baby as your baby was 12lbs when he started throwing up wasn't he?
What was really weird was after DS's operation his first two poos were merconium-like all over again ... which no one ever really explained to me - has that happened to your DS?

Interesting facts about Pyloric Stenosis:
Babies are born with it but the problem does not manifest itself until they are a few weeks old - it is impossible to tell at birth or in scans when pregnant.
1 in 4000 babies have PS and it is usually first born boys - was your baby the 'first' twin?
It is a very very simple op that fixes the problem almost immediately (I was allowed to feed DS 6 hours after his operation and he wasn't sick )
PS babies tend to grow up very strong and healthy and are good eaters

How long ago did your DS have his op Kath?

kitegirl Sat 03-Jun-06 06:56:55

what an awful story . My ds had severe reflux and I was being sent home from my GP with nothing but patronising comments making me feel like a paranoid mother. I also nearly died of a blood clot in my lung last year when a series of GPs and junior doctors at the hospital put my chest pain down to a common chest infection and kept sending me home/refusing to see me. I have also completely lost my faith in the GP/referral system. So glad your little one is ok now.

manitz Sat 03-Jun-06 08:25:18

a bit off topic (and a bit of a selfish rant about inconsistent health care) but when dd1 was born she was 7lb and at 4m she was 8.5lb. they sent me to a dietician to add fats to expressed milk. i asked for a paed to see if somethign was wrong (had no idea what it cld be but they were making such a fuss i thought there cld be some digestive isssue had never heard of PS until today) but it wasn't considered nec. dd2 had same weight issues but was tested for loads by a paediatrician. same hosp, hv and gp bit odd. weren't even interested that sis had presented the same, 'only looking at this baby today mrs manitz'.

Surely docs ought to have a consistent procedure which envelopes all possibilities when a child presents with weight loss/lack of gain? perhaps it is too expensive. Ghosty I can imagine that consistent care must be wonderful, my own issues with what happened to my body during birth wld have been much better dealt with had that been the case, not to mention the health of my babies.

kathj33 Sat 03-Jun-06 12:50:07

Hi Ghosty
Yep the poos were just like you said, really dark and thick like meconium. I didnt question it at the time, I was just so happy to see a poo. [never thought I'd hear myself say such a thing....]
He only had his op 5 days ago so he's still a bit sore - crying at nappy change and when I change his clothes - and very clingy.
He was the first born twin by a minute but only because I had an emergency c-section. The other one would have been the first had they come out naturally.
We were told about the 2 different ways of opening him up, and it just depended on who was operating. I guess with a girl we may have pushed for the belly button but I guess for a boy a scar is less of an issue - scar is same size and place as you say.
NZ sounds like a great place to have children.

ghosty Sat 03-Jun-06 20:45:01

Oh, only 5 days ago? Poor little lad ... poor you

In six months time, when he is a big bruiser and eating everything in sight you will look back on this and laugh (well, maybe not laugh but you know what I mean )

Remember to look after yourself now too, you have been through a lot and he won't remember this ...

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