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
-
Permalink Reply by clair ann tear on -
That is good to hear finally a step nearer just awfull how she has to suffer still, chin up mum and dad there is light at the end of your tunnel x thinking of you all
-
Permalink Reply by Belinda on -
Hi to you all one thing i think we all agree on is Ranitidine is hard to judge, its all weight controled, and lets face it even the doctors are telling us diffrent amounts for diffrent weights. My daughter was on it until around 4 months old, because the amount was so poorly controlled she would reflux so badly that stomach acid would come up and stop her breathing turning blue, being hospitalized, I got so scared and fed up with this i asked to have it changed to Omeprozole, best thing i ever did. I no its a timed medication but none of the weight messing about.
-
Permalink Reply by emma short on -
OMG Tabatha...I feel your frustration. I cant belive your doctor said that to you. What a plonker. My 8 month old has silent reflux and sandifers (back/neck arching). Your daughter needs a PPI (proton pump inhibitor) they switch off the stomache acid. Ranitidine just reduces the acid. A lot of mums find that the symptoms just return after a few weeks on ranitidine. You should ask your pediatrician for either Omeprazole, Lansoprazole or eomeprazole.
I have been through the same thing, i took a video of my daughters episodes. The doc said it looked like she was trying to roll over. I couldnt believe it. I told him if he didnt do something i would pay and go private. Ive even had to find a GI pedatrician myself and ring her secretary directly. Finally my daughter is getting the PH probe.
I hope things improve soon x
-
Permalink Reply by Helen on -
Really sorry, no time to read all these replies but I want to tell you that I couldn't bear to watch your video , brought too many memories back.
Well done for persevering with your referrals despite awful treatment by GP - you must report him to GMC.
Please search on here for Eosinophilic disorders and Dr Shah. You will find more of my posts but also other people who's children have had reflux for too long before getting the proper diagnosis and treatment for various Eosinophilic Disorders.
Hang in there. Helen
-
Permalink Reply by Catherine Hazell on -
I had the same battle. My son was diagnosed with silent relux on Friday and he is 5 years old in November. Fot me, I'm glad the battle is over and am just coming to terms with the fact he has suffered for so long, over 4 years!. We had a PH study and endoscopy a few weeks ago.We are having a barium swallow in the next couple of weeks. The ph study we had showed he was refluxing 250 times in 24 hours.
We used to have episodes like that at night with our son. He used to kick and scream and pull on his pj's round his neck. We described this to the drs we saw but we were refered to a phycologist and pedeatrician neither of whom realiseed that it was silent reflux . Now I know it's part of silent relux. I've got it videoed too. Must try and find it.
The thirst he had was put down to habit and his behaviour a typical boy. Since being on gaviscon and renitidine he sleeps all night and is much calmer.
I went back to the GP to find out why they think it was missed for so long. She said that my son was not displaying the typical symptoms of reflux. He was only diagnosed because he began to describe the feeling in his throat, and said that he has always had it. He had started to think that to feel that pain is normal.
Don't stop fighting for the right treatment and investigations. Take comfort in knowing you are not the only one who has had this battle. Hope yours is coming to an end.
-
Permalink Reply by emma short on
-
Hi Tabatha, sadly you are not alone holly is 9 months now and i had to video her silent reflux episodes to prove i wasnt crazy
http://www.youtube.com/watch?v=CIxdCO_Xscg&feature=related
. She only had her Ph probe last week. Holly has sandifer syndrome, which basically means she cannot manage her reflux pain, which leads to extreme body posturing. Im suprised they havent given you a PPI which blocks the stomach acid, like Omeprazole. My daughter is currently on Neocate Omeprazole and carobel to thicken...Holly does the same as your LO one it is so distressing, i dont think people realise how stressful it is. x
- ‹ Previous
- 1
- 2
- Next ›
Cot Wedge Guide
Baby Reflux Library
Chat to the Founders of Little Refluxers!!
Wedges and Positioners
Photos
Top Content
| 1 |
Hester |
| 2 |
Galina Mosers |
| 3 |
Carine |
| 4 |
Mary Edel |
| 5 |
Sarah B |
| 6 |
Beth |
| 7 |
Hollie O'Reilly |
| 8 |
Lucy |
| 9 |
Helen |
| 10 |
Jo Fitzgerald |
Badge
© 2012 Created by Admin.
Powered by
