Beth
08-10-2006, 10:57 AM
well,
What a nightmare! In a nutshell:
It took three goes and two x-rays to get the probe in. My son (18mths) just kept gagging and choking and resisiting so much, the first time, it ended up in the wrong place, the second time, they gave up and the third time we were lucky. They ended up doing it in the middle of the night, so we captured data from midnight until about 11.00am the next morning. They made us keep it in for another 24 hrs, but get this...they lost all the data, due to a faulty probe! Ahhhhhh! I could have killed the lot of them! The doc said we could try all over again with a new probe or just forget the whole thing and go with the data we did have, so I chose this option.
The probe and machine by the way, was a nightmare too. the probe looked like something off a dusty shelf that hadn't been used in decades. I expected some tiny, thin, sterile thing!! God knows what germs he's picked up with that down his throat for two days! The other nikghtmare was I had to hold the recording box and chase him around for two days like a dog on a lead!! No back pack or easy way of carrying it around himself, so I had to do it! You can imagine what fun that was!
Well, the results from the data showed no refluxing at all from midnight until morning, but then he had breakfast at 8am and it shows two hours of refluxing. The graph she showed me of the data on a computer screen, just kept dipping below ph4 for about 2 hrs. I know this is hardly any data at all and it didn't capture the beginning of the night which is the bit I was most intersrted in, but I guess it tells me that he did have a significant episode of reflux around a meal time. The doc did say that his reflux wasn't severe as he wasn't refluxing non-stop the whole time the probe was in, but it did show an episode. Sje said that coz he has symptoms such as coughing, rattling, hoarseness etc, we ought to give him meds for three months to allow him time to heal. She has prescribed: Domperidone (5ml 4 x a day) and Omeprazole the pink tablet at bedtime. I did try the Omeprazole for 12 nights before, but that clearly wasn't long enough to allow healing and so see a reduction in symptoms.
Am I right in thinking that everyone refluxes, but it's the level of acidity that matters and the frequency? Is it right that my son's two hour epsiode of ph levels dipping way below 4 after his breakfast is a good indication that he has reflux. I do believe actually that he may gradually be growing out of it, as he hasn't vomitted for months and he is sleeping a little better (not hourly waking any more) and that's without meds, so hopefully this new meds regime will enable him to heal and those nasty rattly, chesty stuff will slowly go away over time.
They are also going to do allergy tests and a "sweat" test to check for cystic fybrosis and they are checking his bloods. Checking for diabetes too, as he drinks loads. Do any of you find this? My son only wants water when he wakes at night (and loads of it). He'll happily down 9 oz of water when he wakes. I think it's become a habit and I need to reduce the amount I offer him when he wakes. It's a quick fix solution, coz I know he'll go straight back to sleep if he drinks water.
What do you all think?
Love beth
What a nightmare! In a nutshell:
It took three goes and two x-rays to get the probe in. My son (18mths) just kept gagging and choking and resisiting so much, the first time, it ended up in the wrong place, the second time, they gave up and the third time we were lucky. They ended up doing it in the middle of the night, so we captured data from midnight until about 11.00am the next morning. They made us keep it in for another 24 hrs, but get this...they lost all the data, due to a faulty probe! Ahhhhhh! I could have killed the lot of them! The doc said we could try all over again with a new probe or just forget the whole thing and go with the data we did have, so I chose this option.
The probe and machine by the way, was a nightmare too. the probe looked like something off a dusty shelf that hadn't been used in decades. I expected some tiny, thin, sterile thing!! God knows what germs he's picked up with that down his throat for two days! The other nikghtmare was I had to hold the recording box and chase him around for two days like a dog on a lead!! No back pack or easy way of carrying it around himself, so I had to do it! You can imagine what fun that was!
Well, the results from the data showed no refluxing at all from midnight until morning, but then he had breakfast at 8am and it shows two hours of refluxing. The graph she showed me of the data on a computer screen, just kept dipping below ph4 for about 2 hrs. I know this is hardly any data at all and it didn't capture the beginning of the night which is the bit I was most intersrted in, but I guess it tells me that he did have a significant episode of reflux around a meal time. The doc did say that his reflux wasn't severe as he wasn't refluxing non-stop the whole time the probe was in, but it did show an episode. Sje said that coz he has symptoms such as coughing, rattling, hoarseness etc, we ought to give him meds for three months to allow him time to heal. She has prescribed: Domperidone (5ml 4 x a day) and Omeprazole the pink tablet at bedtime. I did try the Omeprazole for 12 nights before, but that clearly wasn't long enough to allow healing and so see a reduction in symptoms.
Am I right in thinking that everyone refluxes, but it's the level of acidity that matters and the frequency? Is it right that my son's two hour epsiode of ph levels dipping way below 4 after his breakfast is a good indication that he has reflux. I do believe actually that he may gradually be growing out of it, as he hasn't vomitted for months and he is sleeping a little better (not hourly waking any more) and that's without meds, so hopefully this new meds regime will enable him to heal and those nasty rattly, chesty stuff will slowly go away over time.
They are also going to do allergy tests and a "sweat" test to check for cystic fybrosis and they are checking his bloods. Checking for diabetes too, as he drinks loads. Do any of you find this? My son only wants water when he wakes at night (and loads of it). He'll happily down 9 oz of water when he wakes. I think it's become a habit and I need to reduce the amount I offer him when he wakes. It's a quick fix solution, coz I know he'll go straight back to sleep if he drinks water.
What do you all think?
Love beth