Sue (uk) with the 8 yr old daughter

[Guest guest]

Sue,

So far I only have achalasia (I've suffered with it since i was 8 i'm now 20)

i was diagnosed at 18 at Barnsley district general Hospital by a Dr Bullimore ( I thank him every day) he gave me heart pills and angina sprays because they are known to relax soft muscles but they didn't work for me. he reffered me to Sheffield's Northern General Hospital where i see Mr Wyman.

Prior to this i'd had a barium swallow and gastroscopy, at sheffield i had the motility test (wire down your nose ewww) which was unsuccessful.

In December last year i had a cardio myotemy which was fabulous for a few months and now my A is just the same as it's always been (If i had know this would happen i would still have had the Op so don't be put off)

in February this year I had a Botox injection which worked for a week.

Then I found out i was pregnant!........ I went back to see Mr Wyman this week and they don't want to do anymore treatments (nor do I) until after the baby's born. they have given me 3 options more botox, a stretch which I'm really not keen on because of the increased risk of perforation, or they will repeat the operation again which i'd rather go for.

If that doesn't work then I'm gonna ask for an esophagotomy, drastic i know but i just want to be able to eat properly!

until now i hadn't suffered any weight loss but since getting pregnant I've started to lose a few pounds here and there which is causing concern with my A doctors. so they have given me a 6 month open ended appointment and if i have any problems i have to ring them straight away.

sorry for rambling hope this helps

Shirley (u.k)

Sue <sue.ol@...> wrote: Bev wrote:>Hi, just wondering. If it is caused by medications, how would an eight year >old girl get it. I wondered too about the Previcid, Nexium and other >medications for reflux. I think there is a real correlation to either lupus, >autoimmune disease or reflux. All this stuff scares the proverbial out of me.My 5yo has had no medication other than occasional antibiotics, has hadthe usual childhood illnesses i.e. common colds, a couple of earinfections, occasional stomach bug, chicken pox (I realise in the US andsome other countries you vaccinate against but here in the UK it's stillaccepted as a routine childhood disease), poss slapped cheek, a singlebout of pneumonia three years ago following a winter of colds. The only unusual things are that she had a single bout of reflux lastSeptember and she gets cold sores. Oh and she had threadworms last yearwhich disappeared on first treatment. In April when we were initiallyreferred for this swallowing problem she was given Zantac which she tookfor around 4 weeks but it didn't cause the problem - the problem wasthere already.She is an otherwise completely healthy child who maintains her weight,(75th centile height, 50th weight, as per her lifetime trend). She isvery bright (won a prize this year at school for Outstanding AcademicAchievement in All Areas of the Curriculum). I dread to think of herlife ahead if achalasia is only the first symptom of something much morecomplicated.I guess I'm wondering which comes first, chicken or egg. Any thoughts?Does anyone here have just achalasia? Or is it possible that the groupis not representative of the entire achalasia population? I've beenaround the internet for 8 years and know that it is extremely usefultool for those who wish to communicate with others but are in some wayprevented from doing so face-to-face e.g. inability to leave homeregularly or perhaps because they find it easier to communicate usingthe written word rather than the spoken.BTW, although I am naturally afraid, I have experience of people whohave overcome some awful problems and learned to live with them and goton with life regardless and the past few months have helped me hold themin even higher esteem than I already did.Yours ramblingly ;-)-- Suemum to Steffi the Pomwi

[Guest guest]

Shirley wrote:

>So far I only have achalasia (I've suffered with it since i was 8 i'm now 20)

Thanks for your story Shirley. I'm sorry to hear the op didn't work.

Is it likely this is because of the length of time it took to get a

diagnosis or just one of those things?

>Then I found out i was pregnant!........

Congratulations on your pregnancy. A very exciting time of life :-)))

One of my other hats is trainee antenatal teacher with the National

Childbirth Trust but I only started training in March, about the same

time Steffi started with her swallowing problems and haven't picked up a

book this month so don't ask me anything ;-) 2.5 years ago I set up

their group (or onelist as it was then) and I still help moderate

it although it's grown massively since then. There's a chatty group at

nct-coffee for parents and parents-to-be,

if you're interested.

>until now i hadn't suffered any weight loss but since getting pregnant I've

>started to lose a few pounds here and there which is causing concern with my A

>doctors. so they have given me a 6 month open ended appointment and if i have

>any problems i have to ring them straight away.

I'm glad to hear they're keeping an eye on you.

Good luck :-)

--

Sue

[Guest guest]

Thanks Sue!

I'll be sure to check out your other group!

They think the op didn't work because it my A went undiagnosed for so long, I suppose it's just one of those things.

I hope Steffi's doing ok

Shirley

Sue <sue.ol@...> wrote: Shirley wrote:>So far I only have achalasia (I've suffered with it since i was 8 i'm now 20)Thanks for your story Shirley. I'm sorry to hear the op didn't work.Is it likely this is because of the length of time it took to get adiagnosis or just one of those things? >Then I found out i was pregnant!........ Congratulations on your pregnancy. A very exciting time of life :-)))One of my other hats is trainee antenatal teacher with the NationalChildbirth Trust but I only started training in March, about the sametime Steffi started with her swallowing problems and haven't picked up abook this month so don't ask me anything ;-) 2.5 years ago I set uptheir group (or onelist as it was then) and I still help moderateit although it's grown massively since then. There's a chatty group atnct-coffee for parents and parents-to-be,if you're interested. >until now i hadn't suffered any weight loss but since getting pregnant I've >started to lose a few pounds here and there which is causing concern with my A >doctors. so they have given me a 6 month open ended appointment and if i have >any problems i have to ring them straight away.I'm glad to hear they're keeping an eye on you. Good luck :-)-- Sue