Because of where we've been, I am hesitant to post positive progress until it has gone on for a significant amount of time. I would say things were good and all too quickly they would go south. But tonight's sermon has encouraged me to be thankful for how Alex is feeling today.
Around the time of my last post, Alex's choking when eating was transitioning to constantly clearing his throat with every bite. It became so bad that if we were out eating, people would just stare at us the entire meal. Also at this time, his sleep began to really deteriorate. He would either be up all night, or if he did sleep, he'd be completely exhausted the next day. His quality of life was becoming really poor. So, I put a call into the ENT and early December was the earliest appointment we could get.
Well, a week and a half ago, the throat clearing completely stopped. It wasn't a gradual lessening, but literally overnight. He has had one meal since then, during which he had a little difficulty, and that's it.
I knew when I made the appointment that the ENT was going to want to send him for a sleep study. We had discussed it at the last appointment, and sleep apnea has long been speculated. I had been reading and thinking and trying to figure out what else could be causing his sleep trouble, when I decided to alter his dosing schedule for his meds. The first change I made caused things to go very, very badly. But that was also encouraging because it backed up my theory that they may be related. The second change has been going very, very well. It's only been 3 days, which is nothing in the grand scheme of it all. But today I am very thankful for 3 happy days with my son, for him feeling well and being able to enjoy his life.
I don't know how things will go or when some new symptom or trouble will pop up, but for today I am extremely thankful for his smiling face and happy heart. We are so very, very blessed.
Wednesday, November 21, 2012
Wednesday, September 19, 2012
ENT
Today we went to the ENT. I called on Monday for the referral because paperwork from Boston is finally making it this way. Our ped gave me the name of a doctor and I couldn't believe how fast they got us in!
As soon as the doctor walked in the room he said, "Alexander, I feel like I know you even though we've never met." Alex's pediatrician had sent over all of his files from all of his specialists - including Boston. This doctor had read it all and was wearing his thinking cap! I was one happy mama!
This is the deal. He feels very strongly that the swallow issue is a result of nerves in his upper esophagus not functioning properly and periodically spasming. He said that some of Alex's miscoordination may be a learned response to what randomly happens spontaneously. He is referring us to a speech pathologist that he refers all of his tough cases to. Even though we were told by the previous speech pathologist (the one who did his swallow study) that there was nothing we could do to condition the muscles that initiate his swallow, this doctor feels that his speech pathologist will see things differently. Unfortunately, not a lot is known about these nerves, so there aren't many options available.
Alex's laryngospasms have gotten much worse in the past 2 months (one of the reasons I think they got us in so quickly). For those who don't know, sometimes when Alex swallows, it ends up going down his windpipe instead of his esophagus. Instead of spontaneously choking like most people, his larynx locks shut to protect his lungs. In doing so, nothing gets through - including air. That's a laryngospasm. It primarily happens when he's drinking.
For Alex, they typically last 2-5 seconds, but have gone as long as 10 seconds. We have been really apprehensive about leaving him with anyone because it's such a tremendous responsibility to place on someone. We also didnt' know what to do if it didn't release on its own. Today we learned that it will. If it doesn't happen quickly, eventually the carbon dioxide in his lungs will build up, his body functions will slow down and it will be released. The worst that will happen is he will pass out, but then start breathing again. We were concerned that there was the potential for it to stay locked. I know that doesn't sound like the greatest news, but it was actually extremely comforting to us.
He said the larynx tissue is extremely sensitive, and he saw on the film how irritated Alex's is from all of the trauma. It is the reason for all of his coughing and voice cracking. He doesn't feel there is any anatomical anomaly in his windpipe and after reviewing the swallow study himself, feels that the report was very accurate. He was a little frustrated in reading all of Alex's reports that the previous specialists seemed very narrow in their thinking. He also said that I had been very consistent all along in what I said to everyone, and they just didn't give it attention because they didn't have an answer for it. Did I mention how much I like this doctor?!
There are continued concerns about his sleeping, but we're just going to continue to monitor it and if things get worse, we'll go back to the ENT.
I don't think I've been so happy leaving a doctor in a long time. No tests. No meds. Just an evaluation and hopefully some exercises to help Alex feel better and be happier. We really feel like a lot of loose ends are getting tied up and even though there's no cure-all for his ailments...it's SO much easier to move forward knowing what's going on rather than navigating the unknown.
As soon as the doctor walked in the room he said, "Alexander, I feel like I know you even though we've never met." Alex's pediatrician had sent over all of his files from all of his specialists - including Boston. This doctor had read it all and was wearing his thinking cap! I was one happy mama!
This is the deal. He feels very strongly that the swallow issue is a result of nerves in his upper esophagus not functioning properly and periodically spasming. He said that some of Alex's miscoordination may be a learned response to what randomly happens spontaneously. He is referring us to a speech pathologist that he refers all of his tough cases to. Even though we were told by the previous speech pathologist (the one who did his swallow study) that there was nothing we could do to condition the muscles that initiate his swallow, this doctor feels that his speech pathologist will see things differently. Unfortunately, not a lot is known about these nerves, so there aren't many options available.
Alex's laryngospasms have gotten much worse in the past 2 months (one of the reasons I think they got us in so quickly). For those who don't know, sometimes when Alex swallows, it ends up going down his windpipe instead of his esophagus. Instead of spontaneously choking like most people, his larynx locks shut to protect his lungs. In doing so, nothing gets through - including air. That's a laryngospasm. It primarily happens when he's drinking.
For Alex, they typically last 2-5 seconds, but have gone as long as 10 seconds. We have been really apprehensive about leaving him with anyone because it's such a tremendous responsibility to place on someone. We also didnt' know what to do if it didn't release on its own. Today we learned that it will. If it doesn't happen quickly, eventually the carbon dioxide in his lungs will build up, his body functions will slow down and it will be released. The worst that will happen is he will pass out, but then start breathing again. We were concerned that there was the potential for it to stay locked. I know that doesn't sound like the greatest news, but it was actually extremely comforting to us.
He said the larynx tissue is extremely sensitive, and he saw on the film how irritated Alex's is from all of the trauma. It is the reason for all of his coughing and voice cracking. He doesn't feel there is any anatomical anomaly in his windpipe and after reviewing the swallow study himself, feels that the report was very accurate. He was a little frustrated in reading all of Alex's reports that the previous specialists seemed very narrow in their thinking. He also said that I had been very consistent all along in what I said to everyone, and they just didn't give it attention because they didn't have an answer for it. Did I mention how much I like this doctor?!
There are continued concerns about his sleeping, but we're just going to continue to monitor it and if things get worse, we'll go back to the ENT.
I don't think I've been so happy leaving a doctor in a long time. No tests. No meds. Just an evaluation and hopefully some exercises to help Alex feel better and be happier. We really feel like a lot of loose ends are getting tied up and even though there's no cure-all for his ailments...it's SO much easier to move forward knowing what's going on rather than navigating the unknown.
Wednesday, August 29, 2012
Results from Boston
We got the results mid-last week from Boston. There has been a lot going on here, so I apologize for not posting this sooner.
To recap his testing, Alex had blood work, a rectal manometry, an esophageal manometry, and an impedance study. The blood work came back normal. Both manometry tests did, as well. The manometry tests measured the muscle function in those areas. The esophageal manometry contradicted the swallow study, and there are two thoughts on why. 1) He was mildly sedated for the manometry test, causing everything to slow down across the board. 2) It's an intermittent issue.
The impedance study was the 24 hour test to measure his reflux. We wanted to know three things. 1) How much reflux was he experiencing. 2) How acidic is his reflux ON meds. 3) Is the reflux related to the choking. We learned that Alex was experiencing a typical amount of reflux for someone in his situation. His medication IS working, and the doctor stressed he MUST stay on his medication. The reason he has episodes of such discomfort is that he has permanent damage to his esophagus and it makes it hypersensitive. There's nothing much to be done about it. It also doesn't appear that episodes of reflux are the immediate cause for his choking/coughing issues. Nerve damage from the reflux may be making things not coordinate quite right. He also may have an issue with his trachea - related or unrelated to the reflux and episodes of aspiration.
He has been referred to an ENT. The doctor out in Boston wants the report and will follow up after that. He is encouraging a scope of his trachea to investigate further. He had no thoughts about the issues with movement, other than to bring it up to the ENT.
The results were a little bit discouraging, but we have suspicions confirmed in many ways, and will just continue to move forward. His reflux has really been good overall lately, and it's the choking/coughing and lower gi that has really been posing the problems. But to look at him, you wouldn't know anything was wrong. He is happy, otherwise healthy, and greatly loved by so many! And for this, we are so very thankful!
To recap his testing, Alex had blood work, a rectal manometry, an esophageal manometry, and an impedance study. The blood work came back normal. Both manometry tests did, as well. The manometry tests measured the muscle function in those areas. The esophageal manometry contradicted the swallow study, and there are two thoughts on why. 1) He was mildly sedated for the manometry test, causing everything to slow down across the board. 2) It's an intermittent issue.
The impedance study was the 24 hour test to measure his reflux. We wanted to know three things. 1) How much reflux was he experiencing. 2) How acidic is his reflux ON meds. 3) Is the reflux related to the choking. We learned that Alex was experiencing a typical amount of reflux for someone in his situation. His medication IS working, and the doctor stressed he MUST stay on his medication. The reason he has episodes of such discomfort is that he has permanent damage to his esophagus and it makes it hypersensitive. There's nothing much to be done about it. It also doesn't appear that episodes of reflux are the immediate cause for his choking/coughing issues. Nerve damage from the reflux may be making things not coordinate quite right. He also may have an issue with his trachea - related or unrelated to the reflux and episodes of aspiration.
He has been referred to an ENT. The doctor out in Boston wants the report and will follow up after that. He is encouraging a scope of his trachea to investigate further. He had no thoughts about the issues with movement, other than to bring it up to the ENT.
The results were a little bit discouraging, but we have suspicions confirmed in many ways, and will just continue to move forward. His reflux has really been good overall lately, and it's the choking/coughing and lower gi that has really been posing the problems. But to look at him, you wouldn't know anything was wrong. He is happy, otherwise healthy, and greatly loved by so many! And for this, we are so very thankful!
Thursday, August 16, 2012
Boston Children's Hospital
2 and a half weeks ago we had our trip to Boston. It is truly an amazing hospital. During the day, it is a bright, bustling, fun atmosphere. Alex attended storytime, music therapy, craft time, played in the playroom, went up and down musical stairs, and got to meet a player from the Red Sox! At night, however, you're reminded of where you are - hospital monitors, exhuasted parents, tight security, and children who just want to go home.
We were very pleased with the doctor - his approach, his thinking, his skills. We wish our insurance would let Alex be seen there regularly. While admitted, Alex had bloodwork done, a rectal manometry, an esophageal manometry, and an impedance study. I was able to get the blood results last week, and everything was fine. His doctor is currently on vacation, but we expect to get the diagnostic results soon. He wasn't particularly symptomatic during the testing, so we aren't sure how much information they were really able to get. I'm sure whatever we learn, however, will be helpful in figuring out what our next steps will be, if any.
So many places claim to offer a great facility, medical and volunteer staff, and services, but CHB really delivers. We are so incredibly grateful to have had this opportunity. And we are so thankful for the extraordinary family and friends that have surrounded us with support.
We were very pleased with the doctor - his approach, his thinking, his skills. We wish our insurance would let Alex be seen there regularly. While admitted, Alex had bloodwork done, a rectal manometry, an esophageal manometry, and an impedance study. I was able to get the blood results last week, and everything was fine. His doctor is currently on vacation, but we expect to get the diagnostic results soon. He wasn't particularly symptomatic during the testing, so we aren't sure how much information they were really able to get. I'm sure whatever we learn, however, will be helpful in figuring out what our next steps will be, if any.
So many places claim to offer a great facility, medical and volunteer staff, and services, but CHB really delivers. We are so incredibly grateful to have had this opportunity. And we are so thankful for the extraordinary family and friends that have surrounded us with support.
Thursday, June 28, 2012
BOSTON!
Well the call came! We got our appointment out in Boston! I could barely breathe when she called I was so excited. I'm not going to post specifics about our trip here, but you can email me if you want to know. Alexander will be seen this summer and (for good and bad) he'll spend 3 days at the hospital (2 days admitted). They didn't give me a lot of information yet about how he will be scheduled, but she said there will be a lot of testing. Clinic should be calling before we go out to give me more information about what tests will be done. We plan to do some fun things while we are out there, too, and I'll post the details of our trip when we get back.
We are, naturally, very anxious about the trip, and pray that we will leave with new information that will help us move forward.
We are, naturally, very anxious about the trip, and pray that we will leave with new information that will help us move forward.
Tuesday, April 17, 2012
Quick Update on plans
People have been wondering (as have we!) when we're going out to Boston, so I just wanted to post a quick update....
For those of you who didn't hear, our insurance approved a second opinion and related diagnostic testing out in Boston. There are A LOT of steps that need to be taken and red tape cleared before you can schedule an appointment. We have made it a long way these past few weeks, and now our file is sitting on the doctor's desk. When he has time, he will review Alexander's file, all of the imaging that has been done and review his biopsy slides himself. They are still waiting on the slides and some of the imaging. After everything has been reviewed, he will be scheduled. It will probably be a few more weeks before we are put on the schedule. The doctor is currently being scheduled 2-3.5 months out, so we will likely not make it out there until the end of the summer. We can hope for sooner, though!
For those of you who didn't hear, our insurance approved a second opinion and related diagnostic testing out in Boston. There are A LOT of steps that need to be taken and red tape cleared before you can schedule an appointment. We have made it a long way these past few weeks, and now our file is sitting on the doctor's desk. When he has time, he will review Alexander's file, all of the imaging that has been done and review his biopsy slides himself. They are still waiting on the slides and some of the imaging. After everything has been reviewed, he will be scheduled. It will probably be a few more weeks before we are put on the schedule. The doctor is currently being scheduled 2-3.5 months out, so we will likely not make it out there until the end of the summer. We can hope for sooner, though!
Friday, March 30, 2012
Boston bound.....
Last Friday, Alexander had his swallow study. He did great. The test showed that the muscles in his mouth are not coordinating properly, and every time he would swallow, he would then reflux. There was also one incident of "penetration" - when he swallowed, it went down his trachea instead of his esophagus. He was able to get it up without choking, so without the imaging, we wouldn't have known.
Alex also had a "weird" incident 2 weeks ago. He attended a field trip to a gymnastics class. The first thing they did was an obstacle course involving some tumbling and "flips." Alex really has a problem with being turned upside down, held up in the air, or rapid motion in general. He was upset after his first turn, but really held it together. He went through a second time, really struggled after the flips, and by the time he made his way back to me was hysterical. I was surprised, though, that he couldn't get himself together. He clung to me crying for the next hour. When we got home, he wanted to rest and I thought it was because he was just exhausted from the morning. He didn't eat dinner because his "tummy hurt" - nothing new there. He went to bed, and soon woke up vomiting. He vomited for the next 7 hours. We thought initially it was a stomach bug. Even though he was terribly sick and couldn't keep even water down, it just didn't seem like it was just a bug. Long story short(ish), we consulted with his pediatrician about it and he agrees - it wasn't a bug but an underlying medical condition.
So....lots of doctor conversations later, both his pediatrician and gastroenterologist want him to get a second opinion out in Boston before we proceed with surgery. All of his doctors and the speech pathologist feel as though he needs the surgery (or something!), but nobody feels 100% comfortable with it just yet. The only hold up with going out to Boston is getting the insurance company to approve it. I have a call in to Boston to get him set up with an appointment (because it can be a substantial wait), and his pediatrician will be contacting the insurance company to (hopefully) get approval next week.
That's where we sit at the moment. It has certainly been a stressful time, lately, but I'm so glad that a decision has been made and we're moving forward.
Alex also had a "weird" incident 2 weeks ago. He attended a field trip to a gymnastics class. The first thing they did was an obstacle course involving some tumbling and "flips." Alex really has a problem with being turned upside down, held up in the air, or rapid motion in general. He was upset after his first turn, but really held it together. He went through a second time, really struggled after the flips, and by the time he made his way back to me was hysterical. I was surprised, though, that he couldn't get himself together. He clung to me crying for the next hour. When we got home, he wanted to rest and I thought it was because he was just exhausted from the morning. He didn't eat dinner because his "tummy hurt" - nothing new there. He went to bed, and soon woke up vomiting. He vomited for the next 7 hours. We thought initially it was a stomach bug. Even though he was terribly sick and couldn't keep even water down, it just didn't seem like it was just a bug. Long story short(ish), we consulted with his pediatrician about it and he agrees - it wasn't a bug but an underlying medical condition.
So....lots of doctor conversations later, both his pediatrician and gastroenterologist want him to get a second opinion out in Boston before we proceed with surgery. All of his doctors and the speech pathologist feel as though he needs the surgery (or something!), but nobody feels 100% comfortable with it just yet. The only hold up with going out to Boston is getting the insurance company to approve it. I have a call in to Boston to get him set up with an appointment (because it can be a substantial wait), and his pediatrician will be contacting the insurance company to (hopefully) get approval next week.
That's where we sit at the moment. It has certainly been a stressful time, lately, but I'm so glad that a decision has been made and we're moving forward.
Monday, February 27, 2012
Specialist Appointment
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.
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.
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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