Gastric Reflux - how many?
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Topic: Gastric Reflux - how many?
Posted By: Donna.I
Subject: Gastric Reflux - how many?
Date Posted: 18 June 2005 at 9:58am
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Hi, am just curious here. How many here have babies or children with Reflux, or had it? If there was support made available would you be interested is becoming a Regional Co-ordinator? ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Replies:
Posted By: AlyAyde
Date Posted: 18 June 2005 at 11:14am
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Hi Donna. Our little girl has reflux on 15mg losec a day ATM. We are members of the GRSNNZ, which has been fantastic support. Do you know about them? Maybe you could combine the two groups? ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: Donna.I
Date Posted: 18 June 2005 at 12:47pm
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I have approached GRSNNZ but they were not interested in combining, differing views etc. But what is important, regardless to how many support groups are available, who people turn to, it is important that support is there. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: AlyAyde
Date Posted: 18 June 2005 at 2:07pm
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that is so true. What a shame that the groups couldnt combine. Would of thought it made sense for funding etc. I have really found that having contact, (all be it via the internet) with other mums that are in and have been this situation so great. Makes me feel like im not alone. GRSNNZ doesnt have any members other than me in whangarei, Do you? It would be great if i could meet up with someone. As at the moment i dont take Jayde anywhere because of the difficulty feeding and what other people will think when she starts screaming. Even though the girls at the playgroup i take Alyssa to said they wouldnt care i dont think they realise just how bad it is. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: Donna.I
Date Posted: 18 June 2005 at 3:52pm
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Yes, it is a shame. I have looked up our member list, and no we do not have any members in the Whangarei district either. We have no Regional Co-ordinator covering that vicinity, at this stage.
Part of our Co-ordinators role is promoting the support group in their area (at GRSIC's cost), creating coffee groups and fielding phone calls. Our co-ordinators are supported in their roles by myself and our committee members. Our aim is to ensure that parents and caregivers are reassured that they are not alone. It is amasing how we seem to feel isolated, only those with or had Reflux babies know what it is like. The thoughts and feelings that go with it too. We grieve, because our hopes and dreams were soon dashed. There are so many words to describe it all, yet not enough space to put it. 15mg's Losec, ATM, hmm as long as there is no need to increase it, my fingers are crossed for you. My children are all on Losec, till we reached it there was little to no relief till then. Two of mine are combining theirs with Zantac, and all three young ones are on Motilium for Delayed Gastric Emptying. It has been a hard battle, I have finally completed 10 years of sleepless nights, many only 3 hours sleep at night. A hard graft. I empathize with you. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: AlyAyde
Date Posted: 18 June 2005 at 6:29pm
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Gee I cant beleive that you had more than one reflux bubba! Jayde is definately our last baby. Although I must say she is such a good bubba only ever crys when im trying to feed her. And today because she has caught her sisters cold. Good on you for surviving 10 years without going nuts. My hubby tried to feed Jayde her bottle the other night (extremly bad day) and he wasnt getting anywhere. I told him i would take over and he said he would have to learn to feed her as i would soon be in the loony bin. Im not quite there yet but i dont think i would survive 10 years of this sleep deprivation and stress and worry about my little one.
You must have amazing strength. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: Donna.I
Date Posted: 19 June 2005 at 10:13am
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Who says I am not nuts lol. Everyone tells me I am.
The whole reflux thing, does tend to make us question our abilities. In the tend it does strengthen our resolve. Not only the exhaustion that goes with it, the emotional and physical, but also the fact we have to learn to push ourselves. We push our own abilities by questioning the doctors, trying to find a remedy that works. One comment I have been pulled up on is "Doctors are not God, they do not know everything". It is true. Through my journey I have in the past stood in my pediatricians office, trying to persuade this person that though my son is constantly irritable, there is more going on and I felt it was Reflux given the symptoms displayed, regardless to the fact that Zantac was not working. Through my persistance Cimetidene was tried, and a happy baby pervailed. A PH Study later showed severe silent Reflux. It is not easy. But when you know there is something wrong with your child, they are not responding well to one medication, be it the dose or the medication itself, you have to fight. We are our childrens advocates. They rely on us solely. How do we know to fight, without someone there holding our hand, informing us what is available, how best to ease babies pain. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: daikini
Date Posted: 19 June 2005 at 11:58am
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Josiah's got reflux, he usually swallows whatever he brings up though. The infant Gaviscon is enough for him at this stage. Feeding isn't a problem, it's the hours between 4pm and 6pm and occasionally again between 8pm and 10pm when he gets bad. ------------- Becca, mum of 2 girls & 3 boys |
Posted By: AlyAyde
Date Posted: 19 June 2005 at 12:52pm
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Becca I symathise with you. I hope the gaviscon continues to control it. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: Donna.I
Date Posted: 19 June 2005 at 12:57pm
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There are many like Josiah where the Gaviscon is all they need. How old is he now? Reflux has it's peak times, don't ask me why, with my two younger ones they Reflux worst right around 5pm. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: daikini
Date Posted: 19 June 2005 at 2:42pm
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He's 6.5 weeks old. We have an excellent GP who is keeping a close eye on him. ------------- Becca, mum of 2 girls & 3 boys |
Posted By: Donna.I
Date Posted: 20 June 2005 at 9:59am
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That's great to hear Becca, it is amazing what a difference it makes having a great support network behind you. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: chontelle
Date Posted: 21 July 2005 at 9:49am
my son has Reflus hes nearly 9months old and he still has it not as bad as he did but he had it really bad till he was 7months. its hard because they throw up all the time and you you and them never stay clean for very long. i never got any help from any organisation my brother had it till he was 2 so my mum had been through it so she helped alot.any one from christchurch.
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Posted By: Meg
Date Posted: 21 July 2005 at 12:48pm
| My daughter (8 weeks) has been on Zantac for 2 weeks now. It has made a big difference. We were having really bad patches in the evenings when she wouldn't sleep for more the 1 hour at a time, and often stayed awake until 12am or even 2am. Thank goodness that's over. We still have bad patches, and she still a bit spilly, but at least she'll go to sleep now. It was quite frustrating getting her diagnosed though - Plunket and my midwife didn't think it was reflux, but when I took her to the doctor for her 6 week check, she recognised it straight away. Strange really because it apparently runs in families, and I had it as a baby, and again the whole time I was pregnant. |
Posted By: AlyAyde
Date Posted: 29 July 2005 at 8:13am
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Donna. While looking for possible causes on Jayde’s condition, My husband came across Dysphagia on this website:
http://www.babywhisperer.com/forum/viewtopic.php?t=18509 Dont know if you know much about it, but sometimes its misdiagnosed as reflux or they have this as well as reflux. We are going to go back to the Speech lang therapist. As all Jaydes symptoms fit it. Thought id let you know incase any of your parents have babies that are presenting problems like this. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: Donna.I
Date Posted: 01 August 2005 at 10:38am
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Hi,, thanks heaps for that, after reading a little further I came across this link which describes a little more http://www.emedicine.com/pmr/topic194.htm - http://www.emedicine.com/pmr/topic194.htm (am still reading it) I will look further into this topic, then write an article up to place in my web site. I have been over the last couple of months, in between moving house, putting together a brand new web site, one far more accessible than the existing one. Creating it was quick, but have been making a lot of alterations to the content. I want laymans terms, yet articulate, yet also not too much woffle. I really appreciate this input, thanks heaps. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: AlyAyde
Date Posted: 01 August 2005 at 2:57pm
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Well it would be great if the info will help someone aye! Man your a busy lady! ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: Donna.I
Date Posted: 03 August 2005 at 11:58am
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Well I want to have a well informed web site, where as much is covered. It is important to inform, because knowledge is a wonderful key, it opens the way for so many different ways, treatments, awareness. Angelnz (re:busy lady) - It's the insanity lol |
Posted By: newmum
Date Posted: 09 August 2005 at 11:47am
Just passed your details on to a mum on another website Donna. Hope that is ok!  ------------- http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: Donna.I
Date Posted: 09 August 2005 at 4:23pm
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No worries, thanks for that. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: obrienchick
Date Posted: 18 August 2005 at 9:46pm
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My daughter is 3months and 3 weeks old and at 7 weeks was diagnosed with uncomplicated reflux. We had7 weeks of hell with 2 hours sleep a day and a 14 month old toddler to look after as well. Finally a friend listened to me as the midwife didn't and put me onto a private lactation consultant as i thought it was a milk supply issue. Anyway 3 months later she is a thriving bottlefed girl who still has her moments but at this time infant gaviscon is working for her. Has anyone used this and then needed to go onto a stronger/different medication? As i'm wondering what signs would be showing if it wasn't having the same effectiveness on her?
thanks Kim |
Posted By: AlyAyde
Date Posted: 19 August 2005 at 7:56am
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beleive me youll know. Youll get your very irritated baby back. When our girl is suffering her breath smells very acidic all the time. Have you raised your babies bed and everything as well? ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: obrienchick
Date Posted: 19 August 2005 at 9:28am
| Yes we did all of the changes like that straight away and saw an improvement but still the arching back, not feeding etc was still there. Thanks for the quick reply, i'm on the look out as she has been unsettled since we uped the dosage of infant gaviscon so i'm just looking out. not wanting to go down that road again! |
Posted By: AlyAyde
Date Posted: 19 August 2005 at 11:56am
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side note. On gaviscon they can get quite constipated. That can also lead to them being quite irritable as well. Your doc can perscribe lactulose (sp) or rhuger drops 08002rhguer are great for keeping them regular. they are also a natural alternative to gaviscon. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: mumstheword
Date Posted: 19 August 2005 at 1:42pm
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My son Caleb was born with Gastric reflux, well thats what they told us..as ge got older He used to curl into the fetal position scream and then vomit everywhere, up to 6 times a day everyday, it was a very testing trying time for me being a solo mum back then, constsnt bed changing, our clothes and the poor carpet, i was scared to take him to my friends places incase he spewed everywhere, he stopped eating as he knew this made him sick, he did this for the first 3 and a bit years of his life... we went and had test after test donein auckland and in wellington and some where very traumatic for him, having tubes shoved down his nose and throat, they never ever found out what was wrong with him, it enede up as a un diagnosed gastralogical problem, im glad he has grown out of it, but it made getting him to eat very difficult and still is somedays, I dnt know of anybody else that has beenthrough this.. ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: obrienchick
Date Posted: 19 August 2005 at 8:12pm
| Thanks Angelnz as i'm always looking for a natural alternative and was wondering about whether or not she was constipated due to the gaviscon. Do you use either of these two products instead of gaviscon and can they be added to her formula? Also do suggest visiting the GP to get them prescribed or can they be bought over the counter. We're on a very tight budget so if GP is cheaper then that would be better for us. I would be grateful for any other alternative therapies etc as i am trying to save to take her to a cranial osteopath as it worked wonders for me and my son and i have heard that it can really help reflux!? |
Posted By: AlyAyde
Date Posted: 19 August 2005 at 8:29pm
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we went to the osteo lots. IMO it worked for like a day then she was back to being in pain. And the price outweighed the short term benefit for us. I havent used the lactulose but you can get that on script. We use rhuger but its $25 a bottle. We did find an improvement in symptoms when using this (which we didnt find with gaviscon) but now i only use it to keep her regular. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: TommysMummy
Date Posted: 22 August 2005 at 1:42pm
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Hey everyone!
I can join the Reflux club too  Thomas is on Gaviscon and Zantac too still doesnt sleep much have spent money on Osteo but I ended up with some alternative guy and he didnt even touch him so not surprisingly it did nothing  Going to a different osteo this week.Im going to try anything!!!!
Jen |
Posted By: AlyAyde
Date Posted: 22 August 2005 at 3:08pm
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Good luck Jen! ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: TommysMummy
Date Posted: 22 August 2005 at 8:44pm
| Hehe I think ill need it! 65 dollars for one day of peace....hmmmmmm |
Posted By: Donna.I
Date Posted: 23 August 2005 at 7:32am
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ouch. There are many babies who do respond to cranial osteopathy, so anything is worth giving a go, you really don't know till you have tried it. I do hope it works TommysMummy, and saddend you had to join us. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: TommysMummy
Date Posted: 23 August 2005 at 10:05am
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Yeah I talked to the new Osteo Ihave chosen and said DO YOU ACTUALLY TOUCH THE BABY!! They laughed and said yes of course. Makes me mad that I spent all the money I got for my birthday from my Parents on an Osteo for Tommy because I really wanted him to feel better and it did nothing because he just sort of hovered around him! It was VERY wierd :-( Now I just have to pay for it myself! I just want thim to be happy and makes me mad that this guy who is apparently soooo fantastic took my money and just looked at him really sad
Oh well we can give the new one a try and hope he feels better! 
Hope you are all having a great day! Jen and Tommy |
Posted By: newmum
Date Posted: 23 August 2005 at 5:38pm
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Hi Jen! It is Ana here from the everybody board. Glad to see you found the site! ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: TommysMummy
Date Posted: 24 August 2005 at 8:46am
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Hi Ana!
I saw you wee Josef on here!soooo cute!
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