Leigh
01-09-2008, 09:30 PM
I feel so awful, but I really do not want to go to Curran's GI appointment tomorrow morning. I feel it is going to be a colossal waste of time. :sad3:
It has been a long while since we last saw her and I have done so much on my own to get a handle on Curran. He has seen the allergist, as the GI office requested (and I might add MOVED our appointment back by 4 months until this was done, so this really, really, REALLY cheesed me off!) and nothing much has changed since then.
He still bloats. He still has pain. He still has malabsorption issues. He still eats like a horse and stays slim and goes skinny on a regular basis. It seems the more he eats, the thinner he gets at times. Weird. His poop is still uh, 'interesting'. He still gets sick a lot. He still gags and refluxes and pukes, but not as often as he used to. Or at least, maybe I am not seeing it as often as I used to. When Rachel was here, she saw him reflux more often than I did. :oops: He is also off his prevacid right now. I was told to have him off of it when he went to the GI. Hmmm... as he puked twice today, I think I may put him back on again since he gags and threatens to puke 100 times more than that in a day.
I just really do not know what to do. Really, his puking twice in a day is nothing. He used to puke a dozen or more times a day. As an infant and toddler, I could not keep track of how often as it was just 'always'. So, he is better in that regard and as he is not puking regularly as he did even a year ago, I am most grateful for that. Some of you may recall that I had to pull him from Junior Kindergarten as he was puking every day and I was being called to pick him up and not to send him until he was over his 'flu'. :banghead: He was also exploding out his bowels pretty much several times a day, too. He now runs like mad to the bathroom after eating. He is doing much better in that regard, too. His weight is good. He is slim, but good. He was skinny about a month ago, but got it back on again. It comes and it goes, but he is far from a worry for weight.
He does have signs of asthma now. I really do not know what to think of that as perhaps it is the untreated reflux which has caused this latest respiratory flare. I plan on starting a thread on that one as I am not sure what to think about it. It would not surprise me as Iain has asthma with the GERD connection.
He has so many allergies and intolerances for foodstuffs. I give in from time to time and let him eat normally which is food that has no allergens in it, but may contain sugars he is not normally allowed.
So, why am I going tomorrow? Really, what is she going to do or say to me?
We have had horrific GI issues with this kid for over 5 years now. Right now, he is at the best he has ever been.
Is this as good as it gets? Should I continue to pursue this? Really, what do I hope to gain? If I keep him on prevacid, he is better. We do much better sorting out his diet than they do. After the GI appointment, we are to stay at the clinic and see the dietician. Oh, joy. Last time I saw her all she did was give me suggestions of foodstuffs he was either allergic to or intolerant of to round out his diet. She ended up pretty much telling me 'good luck with that'. Great. She did nothing for us. And I suspect tomorrow will be much of the same. :sad3:
My curiosity is WHAT does the GI think it is? He has been tested over and over again for celiac. It ain't celiac. I tried a gluten free diet and the fruit sugars in that diet had him writhing on the ground in so much pain I could not give it more than I think 2 days for trial and it took forever to get him back on track. If it is Crohn's, why has it not shown up by now? EE and EGID has been ruled out as he was scoped upper and lower a year ago last September, so there is no need to look at that again, right? Either you have it or you do not as far as I know.
He has a diagnosis of 'functional bowel syndrome' which is a way of saying 'kiddie irritable bowel syndrome'. It is a great way to give a bigger name to 'I have not got a clue and just need a label here'. :angry7: He has no signs of 'disease' (like the difference between GER and GERD, IBS and IBD are ruled different by the damage or complications). His 9 year old cousin has been diagnosed with IBD and proctitis, but he is not her and it does not mean that is what he is heading for.
Functional bowel syndrome is crazy and difficult for me to swallow as the end result as his eosinophil count, IgE and SED rates are all so high. Something is going on. Clearly, it is not a 'functional' problem. Why can we not find out what it is?
Does he have to grow up more before whatever is underlying rears its ugly head? Are we keeping whatever it is at bay by being so in tune with him and keeping his diet regulated according to what he can tolerate at certain times?
Is he really that sick anymore? If I hear one more time how awful he looks with his black eyes and such, I do not know what I will do. He looks healthier than ever and yet I have had two people from school tell me how awful he looks and that they hope we get to the bottom of it soon. Yeah, it has only been 5 years, so any day now we should have our answer....:banghead:
Oh, I am in a fine mood, aren't I? I guess I am just venting for the sake of venting and did not truly realize how angry I am over this appointment.
what do I do? Go and listen, of course. I am there and that is what I will do. I may duck out before our dietician appointment, though. :smt036
Do I allow another scope? I really wonder what the purpose of that would be. He was scoped a year ago last September and apparently, it was clear. His lower was inconclusive and incomplete as we missed a step in the clean out process. :oops: Whoops. We prepared him for a sigmoidoscopy when she wanted to do the whole enchilada. We honestly did not know and no one clarified for us that it would be different for him from what Iain had done twice. :oops: :oops:
Regardless of that fiasco, she did obtain biopsies from the lower and ruled out thickened walls (as she thought he had) and there was no sign of anything else in the area she was able to scope.
As his poop is better than it was back then and we still have no signs of blood or damage, what purpose would a scope serve? Bill and I are scratching our heads over that.
Do we wait until he is much older? Do we wait until we see blood or damage? A biopsy will show nothing unless he is actively being affected by something or if she is very, very lucky and manages to get a biopsy the size of a pinhead from an area where there IS actually something showing up.
The last time I saw her, she said she would rescope him. I could not wait back then, but now I think I can. Am I nuts?
You are going to laugh, but what I am really most worried about is his reflux. Much moreso than his bowel issues. Funny how that has come about, but being off prevacid has given us loads of upper respiratory problems and loads of gagging, belching, and enough vomit that I think it is the begining. It ain't pretty to have a puking school ager. And yet as I say that all I can think of is how lucky we are as Shae Lynne pukes all the time.
I think he has more food allergies and that due to limited exposure he has not shown all he has yet. I think that they downplay his reflux as they want to find out what his bowel issues are and yet if they take care of his reflux, his quality of life will likely increase. If they increase his prevacid then I bet we will not have as many upper respiratory issues. I am willing to put money on that.
So, what do I do?
I am pretty darn sure that I am going to be brually honest with her tomorrow. I want to know what she thinks it is and to tell me what the long term gameplan is. If it is going to take years to develop, then cut us lose and I will find my way back when and if he ever starts to show damage. Maybe he is perfectly fine and if so, I would love to hear I am a neurotic Mother tomorrow.
I have at least 10 appointments I have to make for Iain and I am ignoring them all. I have no time. I have them literally circling and I just do not know where to start as I have OT, SLP, feeding therapy, behaviour services, the developmental ped, the social worker, some other behaviour services thingy, a screening of some sort, not to mention seeing his ENT and ped again, and the list goes on and on and on and on and... really, I just do not know how many I am ignoring right now as I am far too overwhelmed. I feel so bad as I know Iain needs it all, I just needed a break from it. :oops:
Maybe I am just sick and tired of the appointments? I was supposed to have Curran back to his allergist and it would likely be a really good idea to get him back to his ped and have him referred to an ENT (so I can wait a fricking year) and take care of what is likely a tonsil and adenoid problem. Not to mention I have OT fine motor skills stuff to do with him.
I just feel like I have no time to waste. And I see GI as a waste of time. If they were actually progressively doing SOMETHING, then alrighty then. As I think he has been tested for everything, what else is left? Honestly? Re-testing? Either you have a missing pancreatic enzyme or two or you don't. I do not see what else there is left to do except scope and do yet another celiac test and watch it come back negative. :banghead:
I can not believe I feel that way. Oddly, when I told Bill that he agreed somewhat. He does not know how I keep it all straight and was thinking it was holiday time for therapies as I was not running amok with the kids the last month. Um, no. :oops: He does not know what to do, either. I have no case to state as it is what it is tomorrow. I will go in with more recent poop pictures (yeah, I am doing it!) and I want her to tell me that they are normal. Even if she does not say they are, what are we going to do? Nothing. Absolutely nothing. We have done plenty of that in the last 5 years already.
I would get better help with my ped regarding his reflux. My ped understands what we have been through and has seen it firsthand. I really think in our case we will be cut loose as of tomorrow and will be bounced back to the ped. And I will likely be relieved with that.
If you are still reading, thanks for listening to my rant. I can not believe how negative I am and really do wonder where it comes from. Bill just thinks I am hostile as we have not found out the answer yet and pretty much the majority of the gains have come from us researching and experimenting with Curran. Maybe so, maybe so.
I am going to type up my GI questions to address tomorrow now. And grab the dvd portable player for Curran so that it will not be so excruiating to be there for about 3 flipping hours. :sad3:
Anyone else feel like this? Like they lost their way?
It has been a long while since we last saw her and I have done so much on my own to get a handle on Curran. He has seen the allergist, as the GI office requested (and I might add MOVED our appointment back by 4 months until this was done, so this really, really, REALLY cheesed me off!) and nothing much has changed since then.
He still bloats. He still has pain. He still has malabsorption issues. He still eats like a horse and stays slim and goes skinny on a regular basis. It seems the more he eats, the thinner he gets at times. Weird. His poop is still uh, 'interesting'. He still gets sick a lot. He still gags and refluxes and pukes, but not as often as he used to. Or at least, maybe I am not seeing it as often as I used to. When Rachel was here, she saw him reflux more often than I did. :oops: He is also off his prevacid right now. I was told to have him off of it when he went to the GI. Hmmm... as he puked twice today, I think I may put him back on again since he gags and threatens to puke 100 times more than that in a day.
I just really do not know what to do. Really, his puking twice in a day is nothing. He used to puke a dozen or more times a day. As an infant and toddler, I could not keep track of how often as it was just 'always'. So, he is better in that regard and as he is not puking regularly as he did even a year ago, I am most grateful for that. Some of you may recall that I had to pull him from Junior Kindergarten as he was puking every day and I was being called to pick him up and not to send him until he was over his 'flu'. :banghead: He was also exploding out his bowels pretty much several times a day, too. He now runs like mad to the bathroom after eating. He is doing much better in that regard, too. His weight is good. He is slim, but good. He was skinny about a month ago, but got it back on again. It comes and it goes, but he is far from a worry for weight.
He does have signs of asthma now. I really do not know what to think of that as perhaps it is the untreated reflux which has caused this latest respiratory flare. I plan on starting a thread on that one as I am not sure what to think about it. It would not surprise me as Iain has asthma with the GERD connection.
He has so many allergies and intolerances for foodstuffs. I give in from time to time and let him eat normally which is food that has no allergens in it, but may contain sugars he is not normally allowed.
So, why am I going tomorrow? Really, what is she going to do or say to me?
We have had horrific GI issues with this kid for over 5 years now. Right now, he is at the best he has ever been.
Is this as good as it gets? Should I continue to pursue this? Really, what do I hope to gain? If I keep him on prevacid, he is better. We do much better sorting out his diet than they do. After the GI appointment, we are to stay at the clinic and see the dietician. Oh, joy. Last time I saw her all she did was give me suggestions of foodstuffs he was either allergic to or intolerant of to round out his diet. She ended up pretty much telling me 'good luck with that'. Great. She did nothing for us. And I suspect tomorrow will be much of the same. :sad3:
My curiosity is WHAT does the GI think it is? He has been tested over and over again for celiac. It ain't celiac. I tried a gluten free diet and the fruit sugars in that diet had him writhing on the ground in so much pain I could not give it more than I think 2 days for trial and it took forever to get him back on track. If it is Crohn's, why has it not shown up by now? EE and EGID has been ruled out as he was scoped upper and lower a year ago last September, so there is no need to look at that again, right? Either you have it or you do not as far as I know.
He has a diagnosis of 'functional bowel syndrome' which is a way of saying 'kiddie irritable bowel syndrome'. It is a great way to give a bigger name to 'I have not got a clue and just need a label here'. :angry7: He has no signs of 'disease' (like the difference between GER and GERD, IBS and IBD are ruled different by the damage or complications). His 9 year old cousin has been diagnosed with IBD and proctitis, but he is not her and it does not mean that is what he is heading for.
Functional bowel syndrome is crazy and difficult for me to swallow as the end result as his eosinophil count, IgE and SED rates are all so high. Something is going on. Clearly, it is not a 'functional' problem. Why can we not find out what it is?
Does he have to grow up more before whatever is underlying rears its ugly head? Are we keeping whatever it is at bay by being so in tune with him and keeping his diet regulated according to what he can tolerate at certain times?
Is he really that sick anymore? If I hear one more time how awful he looks with his black eyes and such, I do not know what I will do. He looks healthier than ever and yet I have had two people from school tell me how awful he looks and that they hope we get to the bottom of it soon. Yeah, it has only been 5 years, so any day now we should have our answer....:banghead:
Oh, I am in a fine mood, aren't I? I guess I am just venting for the sake of venting and did not truly realize how angry I am over this appointment.
what do I do? Go and listen, of course. I am there and that is what I will do. I may duck out before our dietician appointment, though. :smt036
Do I allow another scope? I really wonder what the purpose of that would be. He was scoped a year ago last September and apparently, it was clear. His lower was inconclusive and incomplete as we missed a step in the clean out process. :oops: Whoops. We prepared him for a sigmoidoscopy when she wanted to do the whole enchilada. We honestly did not know and no one clarified for us that it would be different for him from what Iain had done twice. :oops: :oops:
Regardless of that fiasco, she did obtain biopsies from the lower and ruled out thickened walls (as she thought he had) and there was no sign of anything else in the area she was able to scope.
As his poop is better than it was back then and we still have no signs of blood or damage, what purpose would a scope serve? Bill and I are scratching our heads over that.
Do we wait until he is much older? Do we wait until we see blood or damage? A biopsy will show nothing unless he is actively being affected by something or if she is very, very lucky and manages to get a biopsy the size of a pinhead from an area where there IS actually something showing up.
The last time I saw her, she said she would rescope him. I could not wait back then, but now I think I can. Am I nuts?
You are going to laugh, but what I am really most worried about is his reflux. Much moreso than his bowel issues. Funny how that has come about, but being off prevacid has given us loads of upper respiratory problems and loads of gagging, belching, and enough vomit that I think it is the begining. It ain't pretty to have a puking school ager. And yet as I say that all I can think of is how lucky we are as Shae Lynne pukes all the time.
I think he has more food allergies and that due to limited exposure he has not shown all he has yet. I think that they downplay his reflux as they want to find out what his bowel issues are and yet if they take care of his reflux, his quality of life will likely increase. If they increase his prevacid then I bet we will not have as many upper respiratory issues. I am willing to put money on that.
So, what do I do?
I am pretty darn sure that I am going to be brually honest with her tomorrow. I want to know what she thinks it is and to tell me what the long term gameplan is. If it is going to take years to develop, then cut us lose and I will find my way back when and if he ever starts to show damage. Maybe he is perfectly fine and if so, I would love to hear I am a neurotic Mother tomorrow.
I have at least 10 appointments I have to make for Iain and I am ignoring them all. I have no time. I have them literally circling and I just do not know where to start as I have OT, SLP, feeding therapy, behaviour services, the developmental ped, the social worker, some other behaviour services thingy, a screening of some sort, not to mention seeing his ENT and ped again, and the list goes on and on and on and on and... really, I just do not know how many I am ignoring right now as I am far too overwhelmed. I feel so bad as I know Iain needs it all, I just needed a break from it. :oops:
Maybe I am just sick and tired of the appointments? I was supposed to have Curran back to his allergist and it would likely be a really good idea to get him back to his ped and have him referred to an ENT (so I can wait a fricking year) and take care of what is likely a tonsil and adenoid problem. Not to mention I have OT fine motor skills stuff to do with him.
I just feel like I have no time to waste. And I see GI as a waste of time. If they were actually progressively doing SOMETHING, then alrighty then. As I think he has been tested for everything, what else is left? Honestly? Re-testing? Either you have a missing pancreatic enzyme or two or you don't. I do not see what else there is left to do except scope and do yet another celiac test and watch it come back negative. :banghead:
I can not believe I feel that way. Oddly, when I told Bill that he agreed somewhat. He does not know how I keep it all straight and was thinking it was holiday time for therapies as I was not running amok with the kids the last month. Um, no. :oops: He does not know what to do, either. I have no case to state as it is what it is tomorrow. I will go in with more recent poop pictures (yeah, I am doing it!) and I want her to tell me that they are normal. Even if she does not say they are, what are we going to do? Nothing. Absolutely nothing. We have done plenty of that in the last 5 years already.
I would get better help with my ped regarding his reflux. My ped understands what we have been through and has seen it firsthand. I really think in our case we will be cut loose as of tomorrow and will be bounced back to the ped. And I will likely be relieved with that.
If you are still reading, thanks for listening to my rant. I can not believe how negative I am and really do wonder where it comes from. Bill just thinks I am hostile as we have not found out the answer yet and pretty much the majority of the gains have come from us researching and experimenting with Curran. Maybe so, maybe so.
I am going to type up my GI questions to address tomorrow now. And grab the dvd portable player for Curran so that it will not be so excruiating to be there for about 3 flipping hours. :sad3:
Anyone else feel like this? Like they lost their way?