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Donna.I
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Topic: Gastric Reflux - how many? Posted: 18 June 2005 at 9:58am |
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?
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AlyAyde
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Location: Whangarei
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Posted: 18 June 2005 at 11:14am |
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?
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Jayde 25/12/04
Alyssa 08/04/03
http://Alyayde.bebo.com
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Donna.I
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Posted: 18 June 2005 at 12:47pm |
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.
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AlyAyde
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Posted: 18 June 2005 at 2:07pm |
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.
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Jayde 25/12/04
Alyssa 08/04/03
http://Alyayde.bebo.com
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Donna.I
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Posted: 18 June 2005 at 3:52pm |
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.
Edited by Donna.I
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AlyAyde
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Posted: 18 June 2005 at 6:29pm |
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.
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Jayde 25/12/04
Alyssa 08/04/03
http://Alyayde.bebo.com
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Donna.I
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Posted: 19 June 2005 at 10:13am |
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.
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daikini
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Posted: 19 June 2005 at 11:58am |
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.
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Becca, mum of 2 girls & 3 boys
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AlyAyde
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Posted: 19 June 2005 at 12:52pm |
Becca I symathise with you. I hope the gaviscon continues to control it.
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Jayde 25/12/04
Alyssa 08/04/03
http://Alyayde.bebo.com
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Donna.I
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Posted: 19 June 2005 at 12:57pm |
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.
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daikini
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Posted: 19 June 2005 at 2:42pm |
He's 6.5 weeks old. We have an excellent GP who is keeping a close eye on him.
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Becca, mum of 2 girls & 3 boys
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Donna.I
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Posted: 20 June 2005 at 9:59am |
That's great to hear Becca, it is amazing what a difference it makes having a great support network behind you.
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chontelle
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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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Meg
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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.
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AlyAyde
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Posted: 29 July 2005 at 8:13am |
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.
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Jayde 25/12/04
Alyssa 08/04/03
http://Alyayde.bebo.com
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Donna.I
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Posted: 01 August 2005 at 10:38am |
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 (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.
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AlyAyde
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Posted: 01 August 2005 at 2:57pm |
Well it would be great if the info will help someone aye! Man your a busy lady!
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Jayde 25/12/04
Alyssa 08/04/03
http://Alyayde.bebo.com
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Donna.I
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Posted: 03 August 2005 at 11:58am |
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
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newmum
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Posted: 09 August 2005 at 11:47am |
Just passed your details on to a mum on another website Donna. Hope that is ok!
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Donna.I
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Posted: 09 August 2005 at 4:23pm |
No worries, thanks for that.
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