Prior to today, I had been asked what I hoped to get out of this appointment. "I just want it to go well." I didn't really know what that meant...I had no decision that I wanted the doctor to reach. I just wanted it to go well. And it did.
Alexander has been referred for the swallow study, but it is one that can be done locally. I was thrilled to hear that. Our GI wanted it scheduled as soon as possible, so I should be getting a call sometime this week with the appointment.
Addressing his lower GI concerns, he felt that Alex has a general motility disorder. That is what I had suspected all along, but it is nice to have everyone on the same page. It will just involve indefinitely monitoring his diet closely and striving to maintain a comfort level for him. Alex has already been scoped twice and it doesn't seem that there is much more information to obtain.
Regarding his reflux, the doctor was supportive of Alex having the fundoplication surgery. Nothing will be decided on that at this time. We and his pediatrician are undecided and everyone needs to be on board before we move forward.
So I left feeling listened to and that his needs were being appropriately addressed. The ultimate outcome could be that this is Alex's "normal" and we'll just do our best to keep him comfortable. Maybe things will just improve for him over time. Who knows? We'll just keep plugging along and addressing issues as they arise.
Monday, February 27, 2012
Tuesday, February 14, 2012
Winter Update
It seems like as soon as Alexander gets better from one illness, he picks up another. I know that's not unusual for his age, but it's made for a tiring winter. Most of these viruses have aggravated his reflux. We were lucky with his most recent illness that it didn't upset his GI tract.
Throughout the winter, Alexander's swallow issues have gotten progressively worse. He has always had trouble with thin liquids, and last August he very suddenly showed improvement - we were all so encouraged by that! The past few months, though, it has gotten worse and worse. He now often has trouble getting solids down and will randomly choke will watching TV or playing. We aren't sure if the choking he experiences while playing is from the reflux or if he's choking on his saliva. He has started drooling more and more, and is developing sores in his mouth.
In January, he also stopped digesting his fruits and veggies. With this, he'd wake at night with abdominal pains. So we stopped fruits and veggies, and the pain stopped.
We were scheduled to see GI in mid-March. I called last week to move up the appointment, and they gave us early March. So today we went to see his pediatrician to try to get some assistance while we wait. He wanted him seen immediately by GI, and was frustrated they haven't come up with more answers or even addressed some of these issues. The office called to get him in sooner, and the soonest was 2 weeks from now. He also pushed for us to go out to Boston. Because of his swallow issues, the GI here may refer us for a swallow study which can only be done out at Boston Children's. If they don't refer us and don't offer any answers, then our pediatrician wants us to go out there for a second opinion. We're also going to discontinue his Zantac, which looks like it isn't doing anything, and add a multi-vitamin.
On the positive side, his weight is good and he looks healthy from the outside! :) He is also a very cooperative patient, which makes the visits easier!
Throughout the winter, Alexander's swallow issues have gotten progressively worse. He has always had trouble with thin liquids, and last August he very suddenly showed improvement - we were all so encouraged by that! The past few months, though, it has gotten worse and worse. He now often has trouble getting solids down and will randomly choke will watching TV or playing. We aren't sure if the choking he experiences while playing is from the reflux or if he's choking on his saliva. He has started drooling more and more, and is developing sores in his mouth.
In January, he also stopped digesting his fruits and veggies. With this, he'd wake at night with abdominal pains. So we stopped fruits and veggies, and the pain stopped.
We were scheduled to see GI in mid-March. I called last week to move up the appointment, and they gave us early March. So today we went to see his pediatrician to try to get some assistance while we wait. He wanted him seen immediately by GI, and was frustrated they haven't come up with more answers or even addressed some of these issues. The office called to get him in sooner, and the soonest was 2 weeks from now. He also pushed for us to go out to Boston. Because of his swallow issues, the GI here may refer us for a swallow study which can only be done out at Boston Children's. If they don't refer us and don't offer any answers, then our pediatrician wants us to go out there for a second opinion. We're also going to discontinue his Zantac, which looks like it isn't doing anything, and add a multi-vitamin.
On the positive side, his weight is good and he looks healthy from the outside! :) He is also a very cooperative patient, which makes the visits easier!
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