So last I posted we were waiting to visit NYC to see a sleep doctor there. After much waiting, we got that appointment all set for January. A few days before the appointment, we found out that our insurance wouldn't cover it......but they would pay for us to go to Burlington, VT. More waiting. This past Friday was the first available appointment. It was a very long time coming since we had been trying to see a doctor since October and Alexander had his sleep study in February 2013.
But we made it through and we're back! He was a wonderful doctor, and we're so glad that we had the privilege of meeting with him. He answered all of our questions (that we could think of at the time) and explained the previous sleep study which no one had been able to really sit down with us and do yet. There has been a lot of speculation by the doctors locally that Alexander suffers from narcolepsy, so that was a big question we posed. Interestingly enough, you typically do not test for it until a child is around 8 years old. So for now, that is up on a shelf. After looking over his sleep study, his sleep log (which we had to fill out for the 2 weeks prior to our visit), his health history and our observations, he felt his main issue is parasomnia - all of the crazy stuff Alexander does while he sleeps. His brain is just all over the place while he sleeps and not only does it make him tired the next day, you can actually watch him all night. There is a very long list of parasomnia behavior and Alex checks most of the them off the list. Some of his favorites are sleeping with his eyes open, being very active in his bed, talking in his sleep, and sitting up having a conversation with you.
The doctor said that we have done everything behaviorally/lifestyle-wise to improve his sleep quality, and that removing his tonsils and adenoids completely removed any possibility of a breathing issue - which he said was really borderline from the start. Either way, there's little else that we can do. He does not think another sleep study would be helpful at this time (which we are totally fine with). The only option left is to try a medication to help calm his brainwaves at night. Because he has had some of these sleep behaviors since he was born, it's anyone's guess if he will grow out of them, but he is still well within the window of when he can. The medication is only a temporary bandaid in the hopes that it will get him through this time until he would grow out of this. It is NOT a long term solution by any means. We were EXTREMELY hesitant to try it, but if we are going to try something, now is the time before he starts kindergarten. The medication he put him on is Klonopin. He started it this week, and his body's reaction has been very mixed. I'll post more about that once he's through the transition.
Also this week Alexander had another upper endoscopy. He has been having a lot of trouble with his reflux. He switched medications to Protonix and that went much worse than the Prevacid. His food was coming back up, he was having pain and laryngospasms again from the reflux. The scope looked fine - she just saw the hiatal hernia that we already knew he had. Without anything else visible, that seems to be the main cause of his troubles and there is little we can do about that. We'll get the biopsy results in a week, but we aren't expecting anything remarkable there. He is back on the Prevacid now, and we are just continuing to modify his diet as he needs. For the past two months he has been having a lot of trouble with constant throat clearing and coughing. We felt it was in large part due to the reflux because it was often in conjunction with eating. But his GI feels it may be due to his rhinitis. Once the biopsy results are in, we'll see if we should consult with the ENT or just let it sit for awhile.
So things have been busy. We're tired. I'll post more when I know more.
Wednesday, April 2, 2014
Friday, December 20, 2013
End of the Year
It's been so long since I posted and people have been asking for an update, so here's the latest to finish out the year.
Alexander had his surgery this summer to remove his tonsils and adenoids. The procedure went well but he had a VERY difficult recovery. As we suspected would happen, the surgery caused his reflux to go haywire - you can imagine the pain of stomach acid on open wounds in your throat. Immediately, though, we could hear a difference in his breathing, and we began to feel optimistic that it would help with his sleep. In turn, improved sleep could mean improved GI system. Unfortunately, neither was the case. There has only been minimal improvement to his sleep. Since the beginning of October we have been waiting for a plan. His case has gone from one specialist to another and is currently sitting on a desk at NYU Medical. Worst case - he has irreparable neurological damage from going so long so early in life with sleep deprivation. Best case - someone can help!! So....we sit and wait and make accommodations to help him feel as well as possible but still be as active as possible.
Also, following his surgery we noticed a lot of nasal congestion, watery eyes, and sneezing. We suspected seasonal allergies. It became really debilitating for him so we had him allergy tested. Seasonal allergies run in the family, so we thought certainly that was the cause. We were shocked to say the least when they all came back negative. The adenoid removal either caused him to develop or exacerbated vasomotor rhinitis. We were even more disappointed when the doctor said there is no cure and only one treatment. Well, thankfully, he has responded amazingly to the steroid spray. If he misses a day, it flares up right away, but as long as he takes it every day, he has few to no symptoms.
On the GI front....his doctor tried a med reduction in October. Prevacid is not approved for long term use, and we have to try every so often to reduce it. Well.....That.Was.Disastrous. In the end, he not only had to go back on his full (adult) dose of Prevacid, but we had to add Zantac back in. Zantac becomes ineffective over time, which is why you'll notice he goes on and off of it. It has helped to get him over this transitional hump, and we are very grateful. He will remain on it until it becomes in effective. For other moms...even if it stops being effective, there will still likely be that boomerang effect for about 2 weeks when they go off. Then it should settle back down to where it was prior to going off. So right now, other than periodic bouts of stomach pain, he's feeling pretty well.
We are very excited for Christmas and for some family staycation time. The three of us will have some relaxed family time in the coming weeks, and we couldn't be happier. Happy Holidays to all of our caring followers! Thanks for all of your love and support and we wish you all a very Happy New Year!
Alexander had his surgery this summer to remove his tonsils and adenoids. The procedure went well but he had a VERY difficult recovery. As we suspected would happen, the surgery caused his reflux to go haywire - you can imagine the pain of stomach acid on open wounds in your throat. Immediately, though, we could hear a difference in his breathing, and we began to feel optimistic that it would help with his sleep. In turn, improved sleep could mean improved GI system. Unfortunately, neither was the case. There has only been minimal improvement to his sleep. Since the beginning of October we have been waiting for a plan. His case has gone from one specialist to another and is currently sitting on a desk at NYU Medical. Worst case - he has irreparable neurological damage from going so long so early in life with sleep deprivation. Best case - someone can help!! So....we sit and wait and make accommodations to help him feel as well as possible but still be as active as possible.
Also, following his surgery we noticed a lot of nasal congestion, watery eyes, and sneezing. We suspected seasonal allergies. It became really debilitating for him so we had him allergy tested. Seasonal allergies run in the family, so we thought certainly that was the cause. We were shocked to say the least when they all came back negative. The adenoid removal either caused him to develop or exacerbated vasomotor rhinitis. We were even more disappointed when the doctor said there is no cure and only one treatment. Well, thankfully, he has responded amazingly to the steroid spray. If he misses a day, it flares up right away, but as long as he takes it every day, he has few to no symptoms.
On the GI front....his doctor tried a med reduction in October. Prevacid is not approved for long term use, and we have to try every so often to reduce it. Well.....That.Was.Disastrous. In the end, he not only had to go back on his full (adult) dose of Prevacid, but we had to add Zantac back in. Zantac becomes ineffective over time, which is why you'll notice he goes on and off of it. It has helped to get him over this transitional hump, and we are very grateful. He will remain on it until it becomes in effective. For other moms...even if it stops being effective, there will still likely be that boomerang effect for about 2 weeks when they go off. Then it should settle back down to where it was prior to going off. So right now, other than periodic bouts of stomach pain, he's feeling pretty well.
We are very excited for Christmas and for some family staycation time. The three of us will have some relaxed family time in the coming weeks, and we couldn't be happier. Happy Holidays to all of our caring followers! Thanks for all of your love and support and we wish you all a very Happy New Year!
Saturday, April 20, 2013
Lots to report
A lot has happened since the last post. I didn't want to write a post and have it full of half information, so I waited to have something more concrete to report. Alex's reflux got really bad at night again during the past few months. We tried a number of different things to alleviate his symptoms, but about a month ago, we put him back on Zantac at night in addition to his Prevacid in the morning. It does seem to be improving things enough that we are going to stay with it for awhile.
Recently, Alex started having days where he would become lethargic, refuse food, develop bad stomach pains, and have painful muscle cramps throughout his body. This has been extremely concerning and baffled his doctor. He had a complete abdominal ultrasound, underwent a sweat test looking for cystic fibrosis and blood work run. Everything came back normal. When I talked to his doctor this week, I could hear the disappointment in his voice with the negative blood work. He was really hoping something concrete would show up - as we all were. So for now, we will just keep monitoring that and be in touch with the doctor if it continues.
In February, Alexander had his sleep study. In was a looong 8 week wait for the results, but last week we got them. Holy Moly. We knew his sleep was terrible, but it was validating to have the test results. I was worried because the night of his study wasn't a particularly bad night's sleep. After reading the results, I can't imagine what he must go through on a bad night. For 10 hours of sleep, he only had 37 minutes of REM sleep. He spent 8 hours trying to get into REM sleep and cycled through the 4 sleep stages almost 300 times. His "sleep architecture is severely disturbed" and he also has sleep disrupted breathing. Because of the breathing difficulty, he will be having his tonsils and adenoids out when school is over. The report also said, though, that the majority of his sleep trouble was NOT related to his breathing. I'll be calling the ENT next week and see if we should be seeing a sleep specialist, as well. (I didn't actually see the sleep report until we left the office). We also want to make sure this isn't going to aggravate his swallow issues or laryngospasms.
The past few weeks in particular have been very stressful ones for us, and quite the emotional rollercoaster. Right now we are just settling into the present plan. We appreciate all of the emails, messages, and expressions of concern. We are surrounded by some really great people.
Recently, Alex started having days where he would become lethargic, refuse food, develop bad stomach pains, and have painful muscle cramps throughout his body. This has been extremely concerning and baffled his doctor. He had a complete abdominal ultrasound, underwent a sweat test looking for cystic fibrosis and blood work run. Everything came back normal. When I talked to his doctor this week, I could hear the disappointment in his voice with the negative blood work. He was really hoping something concrete would show up - as we all were. So for now, we will just keep monitoring that and be in touch with the doctor if it continues.
In February, Alexander had his sleep study. In was a looong 8 week wait for the results, but last week we got them. Holy Moly. We knew his sleep was terrible, but it was validating to have the test results. I was worried because the night of his study wasn't a particularly bad night's sleep. After reading the results, I can't imagine what he must go through on a bad night. For 10 hours of sleep, he only had 37 minutes of REM sleep. He spent 8 hours trying to get into REM sleep and cycled through the 4 sleep stages almost 300 times. His "sleep architecture is severely disturbed" and he also has sleep disrupted breathing. Because of the breathing difficulty, he will be having his tonsils and adenoids out when school is over. The report also said, though, that the majority of his sleep trouble was NOT related to his breathing. I'll be calling the ENT next week and see if we should be seeing a sleep specialist, as well. (I didn't actually see the sleep report until we left the office). We also want to make sure this isn't going to aggravate his swallow issues or laryngospasms.
The past few weeks in particular have been very stressful ones for us, and quite the emotional rollercoaster. Right now we are just settling into the present plan. We appreciate all of the emails, messages, and expressions of concern. We are surrounded by some really great people.
Wednesday, November 21, 2012
Thanksgiving
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.
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, 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.
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