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.
Friday, March 30, 2012
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!
Monday, October 10, 2011
What a "viral infection" means for Alexander
Well our excitement on the day of our last post was short-lived. That evening, Alex suddenly spiked a fever. Any kind of infection in Alexander's body can aggravate any aspect of his GI system. So when Alex catches a bug, we never know which road it will lead down. This time we went down a very steep and scary road.
Alex's reflux very quickly went into overdrive. His reflux was completely out of control causing constant choking and extreme pain. He screamed for nearly 2 days straight that his "teeth hurt." It was puzzling for awhile, but we eventually got him to indicate that it was his throat that hurt. His throat hurt because the acid was relentlessly burning his esophagus. Because it was coming up so quickly and ferociously, he was constantly aspirating. We are always worried about aspiration induced pneumonia with him, so it was an even bigger concern this time.
He came down with the fever Thursday evening. Friday night he was up the entire night, choking and screaming. He also began having difficulty breathing. We saw the on-call doctor Saturday morning. Our primary concern was his respiratory difficulty. His breathing was shallow and his chest was terribly congested. The doctor said that his trouble breathing was from aspirating and that he seemed to also have suffered laryngospasms. During a laryngospasm, the airway and vocal cords lock shut to protect against aspiration. They should release on their own, but in this instant they stay locked shut for a period of time either partially or completely obstructing breathing. He had a few of these episodes over the course of his illness and it is a very scary thing to witness. Alex would panic, flail and during one episode was unable to get any air. They only last a few seconds to a minute, but it is very upsetting for everyone.
The on-call doctor also cautioned us that even though his oxygen levels were good at the time of our visit, if his breathing worsened that night, we'd need to go to the ER for a chest x-ray to check for pneumonia. Thankfully, we didn't need to do that. Typically, Alex would have been put on an antibiotic to prevent the infection from setting in in his lungs, but because of his lower GI condition, Alex can't have an antibiotic unless absolutely necessary.
He ate very little for about 5 days. He refused to eat or drink because it caused him so much pain. On Saturday, he couldn't even swallow his saliva and was drooling like a teething baby. As much as he needed nutrients to help him recover from the infection, he even moreso needed to avoid eating to allow his espophagus to heal.
10 days later, he is still recovering. He still is battling a cough and crankiness, but he is just like a "typical sick kid" now. Needless to say, this recent illness has taken an extreme emotional toll on us. I found a great book today that can be read (free) online, and I intend to purchase, The Reflux Book: A Parent's Guide to Gastroesphageal Reflux. I recommend it to anyone who has a reflux baby or has a loved one with a reflux baby. If you have never endured it, you cannot imagine the physical and psychological toll on the family. This book has so much great information on the disorder itself, as well as insight into the mental state of the caregivers. It is extremely validating for parents of a child with GERD.
Alex's reflux very quickly went into overdrive. His reflux was completely out of control causing constant choking and extreme pain. He screamed for nearly 2 days straight that his "teeth hurt." It was puzzling for awhile, but we eventually got him to indicate that it was his throat that hurt. His throat hurt because the acid was relentlessly burning his esophagus. Because it was coming up so quickly and ferociously, he was constantly aspirating. We are always worried about aspiration induced pneumonia with him, so it was an even bigger concern this time.
He came down with the fever Thursday evening. Friday night he was up the entire night, choking and screaming. He also began having difficulty breathing. We saw the on-call doctor Saturday morning. Our primary concern was his respiratory difficulty. His breathing was shallow and his chest was terribly congested. The doctor said that his trouble breathing was from aspirating and that he seemed to also have suffered laryngospasms. During a laryngospasm, the airway and vocal cords lock shut to protect against aspiration. They should release on their own, but in this instant they stay locked shut for a period of time either partially or completely obstructing breathing. He had a few of these episodes over the course of his illness and it is a very scary thing to witness. Alex would panic, flail and during one episode was unable to get any air. They only last a few seconds to a minute, but it is very upsetting for everyone.
The on-call doctor also cautioned us that even though his oxygen levels were good at the time of our visit, if his breathing worsened that night, we'd need to go to the ER for a chest x-ray to check for pneumonia. Thankfully, we didn't need to do that. Typically, Alex would have been put on an antibiotic to prevent the infection from setting in in his lungs, but because of his lower GI condition, Alex can't have an antibiotic unless absolutely necessary.
He ate very little for about 5 days. He refused to eat or drink because it caused him so much pain. On Saturday, he couldn't even swallow his saliva and was drooling like a teething baby. As much as he needed nutrients to help him recover from the infection, he even moreso needed to avoid eating to allow his espophagus to heal.
10 days later, he is still recovering. He still is battling a cough and crankiness, but he is just like a "typical sick kid" now. Needless to say, this recent illness has taken an extreme emotional toll on us. I found a great book today that can be read (free) online, and I intend to purchase, The Reflux Book: A Parent's Guide to Gastroesphageal Reflux. I recommend it to anyone who has a reflux baby or has a loved one with a reflux baby. If you have never endured it, you cannot imagine the physical and psychological toll on the family. This book has so much great information on the disorder itself, as well as insight into the mental state of the caregivers. It is extremely validating for parents of a child with GERD.
Thursday, September 29, 2011
Dental Check-Up
More good news! (Let's just keep it coming!) Alexander went for his 6 month dental checkup and first cleaning. He received an EXCELLENT report and was SUCH a good patient! It looks like the protective measures we've been taking with his teeth are working. At his last visit, his teeth looked great overall, but the reflux damage was evident. The doctor wanted us to switch to a flouride toothpaste and watch his teeth closely for decay. The damage hasn't progressed and everything looked Great! She was very pleased and Alexander is VERY proud of himself!! :)
Tuesday, September 20, 2011
Some Good News
We saw Alexander's GI doctor today. Mid-August to mid-September Alex's GI system has been doing really well. His reflux has been well controlled, and his lower GI system has been behaving. In August, Alex seemed to (rather suddenly) develop the ability to swallow thin liquids. It was a pretty dramatic change and he's been doing super. He still chokes ocassionally, but nothing like he was before.
His upper and lower system began to flare once again last Thursday. It has slowly been getting worse, but we are all thinking that it's related to the cold he developed at the same time. GERD can be aggravated by any little infection in the body and also inadequate sleep. (Alex started school last week and is having some trouble adapting his nap schedule). He needs to have a month of good sleep and health before we'll be concerned about the flare (barring anything extreme, of course).
We need to add a TUMS to his daily routine because of the long term side effects of his meds - they affect the absorption of calcium. There are no plans to reduce his meds at this time.
So....we aren't scheduled to go back for 6 months!!! I can't tell you how excited I was about that! It has been such a long road for us, and to hear that he's stable enough to wait 6 months is fantastic news!
His upper and lower system began to flare once again last Thursday. It has slowly been getting worse, but we are all thinking that it's related to the cold he developed at the same time. GERD can be aggravated by any little infection in the body and also inadequate sleep. (Alex started school last week and is having some trouble adapting his nap schedule). He needs to have a month of good sleep and health before we'll be concerned about the flare (barring anything extreme, of course).
We need to add a TUMS to his daily routine because of the long term side effects of his meds - they affect the absorption of calcium. There are no plans to reduce his meds at this time.
So....we aren't scheduled to go back for 6 months!!! I can't tell you how excited I was about that! It has been such a long road for us, and to hear that he's stable enough to wait 6 months is fantastic news!
Thursday, August 18, 2011
Always something new
We met with the Chief of Pediatric Surgery today. She and her student were both wonderful. They were both thorough, good listeners, and we didn't feel rushed. Everyone agreed that we will try to wait a year before during surgery. She hopes that over the course of the next year he will grow out of his reflux. She said the surgery is still an option for him and something we should keep in mind, but for now we are going to hold off on it.
In discussing Alexander's medical history and the consequences of doing surgery, the issue of his swallowing difficulty came up. We have mentioned this to his doctors since he was a newborn, but it has always been dismissed. She was bothered by it and is going to make a note to his GI dr to look into it more. If we decide at some point to do the surgery, he will need to have a swallow study done to investigate his swallow mechanism. (If there is an issue he will not be eligible for the surgery). It may be something his GI dr decides to look into now and not wait. We'll discuss it at his app't next month and see how she wants to proceed. If he has it done, he'll have to go out to Boston Children's Hospital, as it is not done here.
His heart murmur seems to be a little bit more pronounced. Nothing emergent, but something to take note of.
So we are really pleased with how everything went today. It's the outcome we were hoping for. Thanks for all of the prayers and words of encouragement. :)
In discussing Alexander's medical history and the consequences of doing surgery, the issue of his swallowing difficulty came up. We have mentioned this to his doctors since he was a newborn, but it has always been dismissed. She was bothered by it and is going to make a note to his GI dr to look into it more. If we decide at some point to do the surgery, he will need to have a swallow study done to investigate his swallow mechanism. (If there is an issue he will not be eligible for the surgery). It may be something his GI dr decides to look into now and not wait. We'll discuss it at his app't next month and see how she wants to proceed. If he has it done, he'll have to go out to Boston Children's Hospital, as it is not done here.
His heart murmur seems to be a little bit more pronounced. Nothing emergent, but something to take note of.
So we are really pleased with how everything went today. It's the outcome we were hoping for. Thanks for all of the prayers and words of encouragement. :)
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