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Donna.I View Drop Down
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    Posted: 10 April 2006 at 4:17pm

Hi

I am seeking information or services that others would like to see made available that is not already in service. This is not just in relation to infants and children with reflux, but reflux in adults too. I want to know what others want, and serve them. I feel this is the best way of giving a better service.

What interest is there of coffee groups/meetings?

Any others thoughts please.

Donna Ingram
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robyn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote robyn Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2006 at 5:13pm
For me the biggest thing would be information in general. Ive always had reflux and one doctor gave me tablets to take but then she retired and Ive just never really had any info about it or what I should do, it keeps getting brushed off really. Mine wouldnt be a bad case but during pregnancy it gets really horrible and have to wonder what all the mylanta and gaviscon is doing to poor bubs. Plus I have been told so many different things about waht is safe to take during pregnancy
KOBE born 19 March 2004



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Donna.I View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna.I Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2006 at 1:07pm
Yes I hear what you are saying. A message forum acknowledging the condition was my number one priority, and have incorporated it with my one for infants and children. I will see what other adequate information I can acquire to assist. I am setting up a sub domain to the initial web site, to ensure all information is separate yet relevant.

Edited by Donna.I
Donna Ingram
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newmum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newmum Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2006 at 2:30pm
You might want to post your info under www.everybody.co.nz - heaps of reflux muns and bubs on there!

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Donna.I View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna.I Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2006 at 8:26pm
Yes thanks for that, I would if I could but the lady who runs the reflux board literally removed me just because of who I am.
Donna Ingram
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newmum Quote  Post ReplyReply Direct Link To This Post Posted: 12 April 2006 at 9:16am
oh ooops that's not nice!!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karysta Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 11:33am
I think its because the everybody reflux board bit is in association with COSM?!? still not nice.

maybe a database or something with reflux friendly docs would be useful? - I know we had trouble with our first doc because she decided we were just too dumb to stop bubs from crying.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna.I Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 1:46pm

Karysta - that doc it is not nice. Grr that makes me so angry, mind you I will never forget standing in my paeds office with a screaming 7 month old and being told he was just an irritable baby. After having trialed Zantac after Gaviscon and neither working, that was the docs conclusion. Needless to say this paed is the better option we have in Southland, so I was determined not to give up and I was not going to leave his office till he had given another medication to try, this was 11 years ago and Losec was not a drug used then. We were given Cimetidiene and lo and behold it worked. Out of two PH studies performed on this son, the first came back negative, the second severe Reflux. As you can see my experiences are hands on. I swear on the adage that 'The medical profession are not God, they do not know everything'. We as parents know our children far better than anyone, and when our gut instinct says something is not right, we are right. To be heard is one of the hardest aspects, along with dealing with an inconsoliable baby.

I think a good paeds/docs databse would be good. I can incorporate it into the forum, so members can have their say over who they have found good. But it will take people speaking up to let others know.



Edited by Donna.I
Donna Ingram
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 1:51pm
Losec is awesome i used to get horrid heartburn and all sorts when i got my period, altho i get it now being pregnant but yeh i am totally with the wanting to know what is safe during pregnancy and what is safe for bubs. Spesh being a first time mum i have little knowledge on it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna.I Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 1:55pm
Jezsika - Each doctor is different, some will prescribe Losec while pregnant, others not. If and where possible resort to natural health remedies, there is a Kiwifruit juice product which apparently you can get from supermarkets which is good. So is Lemon and barley drink, I used it heaps through my last pregnancy. I do believe in natural treatments to either compliment existing treatments, or replace them when possible.  
Donna Ingram
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 2:07pm
Thanks Donna the funny thing is i cant stand kiwifruit, lemon etc makes me want to gag lol
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna.I Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 2:09pm

Zyactin, retails at $14.95, made from Kiwifruit and its gluten free and is available from health stores.

Another option is drink 2x 800ml bottles of water with ACV (apple cider vinegar) each day.

Donna Ingram
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Donna.I View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna.I Quote  Post ReplyReply Direct Link To This Post Posted: 13 April 2006 at 2:10pm
Lol yeah I am allegic to Kiwifruit. The lemon and barley is not bad, but it also depends on the brand, we dilute more than the instructions say as well.
Donna Ingram
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 98765 Quote  Post ReplyReply Direct Link To This Post Posted: 14 April 2006 at 8:13pm
More information theres not much in books. Jack wouldn't settle and my plunket nurse sent us to the dr and he gave us zantac, i had no idea Jack cud possibly have reflux. Jack was in the 25% for his weight at 6 weeks and last week he was in the 75%, so the zantac has made a huge difference. I just want some more info on when to stop the zantac and other things to do other than a dummy and raised bed.
sorry for the novel

www.jackkeith.blogspot.com
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AlyAyde Quote  Post ReplyReply Direct Link To This Post Posted: 14 April 2006 at 9:32pm
The thing that really has angered me dealing with reflux is how much pain a baby has to be in. If an adult couldnt eat because of the pain they would have all sorts of tests to rule things out. Because in most cases its small babies that have reflux and they cant talk, its like you get fobbed off when you try to seek help and find answers.

One thing i found out when our family was going through the pure hell of silent reflux is that you cant push enough for answers and treatment. I had to educate myself and then go to the paed with suggestions on things to try.

My heart goes out to anyone with a baby with reflux. I know how much your heart breaks with the thoughts that you would do anything to take away your childs pain. And how it does your head in to know you are causing their pain by having to force feed them.

It so should not be like that, more should be done to find out why this happens and how we can stop it from happening, rather than trying different or a mixture of medication.


Jayde 25/12/04

Alyssa 08/04/03

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