Hi... another newbie here! (Long intro I'm afraid!)
Hi, my name is Tabatha and I live in Birmingham with my fiance, Leigh, and our 13-month old daughter, Morgan.
Morgan has suffered with Silent Reflux since birth and we have had a constant battle with the medical profession ever since. Our GP didn't believe there was anything wrong with her, but agreed to prescribe Gaviscon at 6 weeks old, pretty much just to shut me up!
Once we started weaning at about 6 months, things seemed to go from bad to worse. All the GP said was to stop solids for a few months and then try again!!!!!
After going back to the GP several times, virtually begging him to refer her to see a Paed, he finally agreed, although he turned to Morgan and said (and I quote) "There's nothing wrong with you as far as I'm concerned, but if it will keep your Mummy quiet and happy for someone else to tell her that, then that's fine"!!!!!!!!! This was back in February and she finally saw the Paed for the first time in March ( by then she was 8 months old!) and we saw a registrar who confirmed that the symptoms did indeed sound like Silent Reflux, and prescribed Domperidone and Ranitidine and to continue the Gaviscon.
We've been back for two more follow ups, and she's now been taken off the Domperidone and Gaviscon and has had her Ranitidine dose increased to match her weight gain (she's now just under 9kg and is having 1.3ml twice a day). But the attacks are getting more and more frequent now, and more severe each time, and we find that some nights, we're having to give her an extra 0.5-1.0ml to ease things enough for her to get some sleep. (Rightly or wrongly, who knows, but we can't just sit by and watch her in such pain!)
We managed to transfer to a different GP practice last week, so I took Morgan along to see one of the GP's there, who immediately said that this has been going on far too long and was shocked that she hadn't had any tests or studies done. So she's re-referred for an urgent second opinion and we've got an appointment next week (19th August) to see a Consultant (I made sure it was a consultant and not just the registrar this time too!) so fingers crossed we get more joy.
This is a video clip of her in the middle of one of her attacks:
http://www.youtube.com/watch?v=egytNVgn8WY
We took it earlier this evening so we can show the consultant next week. They can last anything from 5 minutes to over an hour - in fact, one night last week, she had an attack that lasted well over 3 hours!
Anyway, I've been lurking around on this site for a while now, but I've finally plucked up the courage to post!
Thanks for reading.
Morgan has suffered with Silent Reflux since birth and we have had a constant battle with the medical profession ever since. Our GP didn't believe there was anything wrong with her, but agreed to prescribe Gaviscon at 6 weeks old, pretty much just to shut me up!
Once we started weaning at about 6 months, things seemed to go from bad to worse. All the GP said was to stop solids for a few months and then try again!!!!!
After going back to the GP several times, virtually begging him to refer her to see a Paed, he finally agreed, although he turned to Morgan and said (and I quote) "There's nothing wrong with you as far as I'm concerned, but if it will keep your Mummy quiet and happy for someone else to tell her that, then that's fine"!!!!!!!!! This was back in February and she finally saw the Paed for the first time in March ( by then she was 8 months old!) and we saw a registrar who confirmed that the symptoms did indeed sound like Silent Reflux, and prescribed Domperidone and Ranitidine and to continue the Gaviscon.
We've been back for two more follow ups, and she's now been taken off the Domperidone and Gaviscon and has had her Ranitidine dose increased to match her weight gain (she's now just under 9kg and is having 1.3ml twice a day). But the attacks are getting more and more frequent now, and more severe each time, and we find that some nights, we're having to give her an extra 0.5-1.0ml to ease things enough for her to get some sleep. (Rightly or wrongly, who knows, but we can't just sit by and watch her in such pain!)
We managed to transfer to a different GP practice last week, so I took Morgan along to see one of the GP's there, who immediately said that this has been going on far too long and was shocked that she hadn't had any tests or studies done. So she's re-referred for an urgent second opinion and we've got an appointment next week (19th August) to see a Consultant (I made sure it was a consultant and not just the registrar this time too!) so fingers crossed we get more joy.
This is a video clip of her in the middle of one of her attacks:
http://www.youtube.com/watch?v=egytNVgn8WY
We took it earlier this evening so we can show the consultant next week. They can last anything from 5 minutes to over an hour - in fact, one night last week, she had an attack that lasted well over 3 hours!
Anyway, I've been lurking around on this site for a while now, but I've finally plucked up the courage to post!
Thanks for reading.
Views: 5
Replies to This Discussion
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Permalink Reply by Nicola Duff on -
Hi Tabatha, you poor things to have had such a struggle in getting your littl one diagnosed. We were lucky in that our doctor was very helpful and prescribed Gaviscon and Ranitidine to our little girl, Evie, fairly early on. Fingers crossed the Ranitidine seems to do the trick for Evie's Silent Reflux, however like you we have increased her prescribed dosage each time her weight increases. We're just starting to wean now so am hoping that this won't cause a flare up.
Good luck with the consultant next week, hope they can help and maybe prescribe some different meds which will help eith Morgan's reflux. It's such a heartbreaking thing having to watch your little one suffer, especially when it seems that nobody wants to help! This website is a godsend.
Nikki
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Permalink Reply by clair ann tear on -
I feel for you my twins are now 9 months they were 6 weeks prem the chubby one yes believe it or not is the refluxer I get told he doesn look like he has reflux well were all different and they go either way up or down, I rang 999 week ago today he was choking on bile and turned blue 2nd time this has happened, paramedics took it serious shame I had to sit it a&e for over 2 hrs for the Dr by which time it had passed.
Anyway back to you and your little one, just watched your vidoe clip we did same recently filmed him your clip was just like ryan bought tears to my eyes. Sometimes you have to push to get anywhere, we were going privatley until GP surgery got funny issuing his new meds so have now been refereed to hospital but seeing same consultant as privately in another month. Ryan is on neocate omezrapole domperidone gaviscon calcium sandoz and gets frequent chest infections. Perhaps they need to increase sounds like it and I would do what you have done,the meds it isnt long term solution but anything that can ease there pain is welcome,let me know how you get on. I am always told he is healthy and gaining weight so what is the problem..............honestly what is wrong with these peope! excuse spelling tired mummy of 4
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Permalink Reply by Victoria on -
Hi hun - just wanted to reply quickly - I am no doctor but you are not on the max dose for rantidine - my LO is on 1.35ml 3 times a day and she is only 7kg - at 9kg the max dose is 1.9ml 3 times a day - my doc lets me calculate it myself and gave me the formulas - she just prescribes the meds for me as she knows I am quite switched on and won't OD my baby
I have noticed (in the past as she seems a little better lately) that if my LO is not on the max dose her reflux is much more severe and it can be just a 0.05ml dose that makes all the difference - the max doses are there for a reason as this seems to be what works for babies with severe reflux so I would speak to your GP or Paed and get the dose upped till it brings it under control or perhaps consider a PPI like omp which will maybe be more effective for you
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Permalink Reply by Fiona H on
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Hi
The max dose is 4mg per kilo of weight (which then has to be converted into mls). My daughter is only 7.7kg and is on 1.9ml three times per day....so don't think that 1.9mls can be the max dosage for a 9kg baby. But I let the consultant calculate if for me.
Out of interest what formula do you use?
Fiona
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Permalink Reply by Victoria on
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Hi hun - I have been told its 3mg per kilo body weight - and all the info I have found on the internet supports this - where did you get the 4mg from?? Is it from the consultant - if so wish I had been told that - she is much better now but could have done with a higher dose at times as we were on the max and had nowhere to go IYKWIM
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Permalink Reply by Fiona H on
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Hi
Sorry I haven't been looked at this site for a while...but the consultant told me it was 4mg per kilo (plus when he was on hols and I was in dire straits and needed an increase in ranitidine and a different consultant calculated it for me and also told me that the max is 4mg). Maybe it depends on how bad the reflux is as to what dosage they will use. Plus I suppose I shouldn't tell people it is 4mg per kilo in case that was a special case for my daughter.
Fiona
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Permalink Reply by Tabs on -
Thank you so much for your replies.
I knew her dosage of Ranitidine has scope to increase, which is why I haven't felt too bad about giving her a little extra top-up when she's really flaring up. (My mum is a Pharmacy Dispenser... comes in very handy I tell you!!).
Wednesday can't come round soon enough! The last few weeks, she has really been getting worse, and it's really starting to take it's toll on all of us, especially Morgan.
Can I ask, have any of your LO's had investigative tests done? eg pH probes, endoscopy etc... Although we don't want to have to put Morgan through any unnecessary testing and upset, we're wondering whether it is something we should be pushing for now, seeing as she's been suffering like this for 13 months?
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Permalink Reply by Victoria on
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Hi hun - no we have not had any tests done as she responded to the drugs so it was not necessary - however I would have had them done like a shot if necessary
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Permalink Reply by Tabs on
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Well tomorrow is almost here, and it can't come soon enough. The poor bugger's now up to 3 or 4 or more of these attacks every day now, sometimes lasting a couple of hours at a time. She's gone from having maybe one or two a week, to once daily, to this in the space of just under 4 weeks!
It's getting worse every time now too, and also the last few days, once she's calmed down from an attack, she does a funny twitchy/jerky thing once every minute or two for about 20 mins or so? It almost looks like she's got hiccups, but she isn't actually hiccuping and her whole body jerks... very weird!
Her appointment is at 11am, so please keep us in your thoughts (sorry to ask, as I know so many of you have enough on your plate as it is!) and I shall try and get on here and update as soon as I can.
Thank you all so much for listening to me waffle on... it's so nice to be amongst people who truly understand.
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Permalink Reply by lisa on
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Hi,
Just wanted to say my daughter does the funny twitchy/jerky thing aswell, she is 7 and a half months now and has done this since from 3 months old, it is like a hiccup but without the actual hiccup! She also does this after an attack and it goes when she has calmed down, I'm not sure what this is I have mentioned it to her peadtrician but they are unsure and it doesn't seem to cause her any problems.
Another mystery to do with reflux! Hope today went well,
lisa
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Permalink Reply by Tabs on
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Well the appointment went ok. This new consultant, Dr Roper, is lovely. She basically said that we need to start investigating exactly what the problem is so that we can treat it properly!!! (What have we been saying for months?!!!!)
So, she's booked Morgan in for a Barium Swallow/Meal on 14th September!!! (That should be fun!!!) And she's also going to arrange for her to have blood tests done to check for Coeliacs and a few other things (although she didn't say what?) and to try and get a stool sample.
We will then go and see her again the following week (23rd September) to discuss the results and decide where to go from there. In the meantime, we are to carry on as we are! No change of meds at all! So poor little Moo's going to have to suffer on for a few more weeks, at least, yet. And so are we, not getting much sleep!
But hey ho, it's a step in the right direction I suppose!
Thank you for all your support.
xxx
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