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.
Monday, October 10, 2011
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. :)
Wednesday, July 20, 2011
Surgeon Call
The Chief of Pediatric Surgery called today (not the surgeon we saw previously). She looked over Alexander's upper GI and went over the results. Even though the hernia didn't show up on the test, she said that it only means it isn't large. It is likely smaller and possibly transient - which is what we thought. At this point in time, she is on the fence whether or not to do the surgery. Because of his symptoms and how bad he gets during a bad spell, he is definitely a candidate. But because he is doing so well developmentally and (GI tract aside) is very healthy, we all hesitate about doing it. She wants to see him in August to get an accurate assessment of his weight/growth and discuss the surgery more in depth.
Alexander continues to feel well following the upper GI and likes reminding us that he's, "Such a good boy at the doctor!" :) Love him!
Alexander continues to feel well following the upper GI and likes reminding us that he's, "Such a good boy at the doctor!" :) Love him!
Tuesday, July 19, 2011
Upper GI - Done!
I would just like to start by saying Alexander is amazing - what a difference a year can make! His comprehension is at the point where he can be preset really well for things like this, and because he has so much experience with these things (sadly), he takes it all in stride.
The upper GI showed reflux, but not a hiatal hernia. If it wasn't for the suspicion of the hernia, they weren't going to redo the test. (They thought it was a bit ridiculous we were there again). The doctor said that based on his last upper GI you can't dispute the presence of reflux. It was nice to speak with someone who validated everything we've been through!
We will be hearing back from the surgeon next week to hear her assessment of the results. We suspect that they will not want to perform the surgery, and refer us back to his GI specialist. But we will see!
The upper GI showed reflux, but not a hiatal hernia. If it wasn't for the suspicion of the hernia, they weren't going to redo the test. (They thought it was a bit ridiculous we were there again). The doctor said that based on his last upper GI you can't dispute the presence of reflux. It was nice to speak with someone who validated everything we've been through!
We will be hearing back from the surgeon next week to hear her assessment of the results. We suspect that they will not want to perform the surgery, and refer us back to his GI specialist. But we will see!
Tuesday, July 12, 2011
We met with a general pediatric surgeon today. The appointment definitely went differently than we had thought it would go. Alexander is going to have an upper GI scheduled to get a clearer picture about the hiatal hernia. Apparently there are very different opinions on the interpretation of test results and symptoms over the past 2 years. This doctor doesn't feel there's enough evidence to say he even has acid reflux (not that he has any other thought on a diagnosis). It was a bit like being in the Twilight Zone...
Tuesday, July 5, 2011
New meds
Alex has continued to not much better. Eating and drinking have become such a struggle for him. Since everything he eats has been refluxing back up, and he usually chokes when he tries to drink, he has decided that eating and drinking are not really for him. Not the best plan for anyone, especially a growing toddler.
I spoke with his GI doctor this morning. She wants to switch from the Prevacid to Nexium (still twice a day) and see if that gives him any improvement. He also woke this morning with a congested chest, so we were sent to the pediatrician to rule out pneumonia. Because of the frequent choking and aspiration, reflux induced pneumonia is always a concern. Thankfully, his chest sounded okay. If the cough worsens, he will get a chest x-ray.
He does seem a little better this morning. After 2 hours he agreed to drink some milk. He was then more willing to eat and drink.
We will watch him to see if the Nexium helps until Friday. If there's no improvement, the GI specialist will set us up with an appointment for us to speak with the general surgeon and decide if the surgery is right for him. Alex's pediatrician has some concerns about the surgery and will be involved in the decision making process, as well.
I spoke with his GI doctor this morning. She wants to switch from the Prevacid to Nexium (still twice a day) and see if that gives him any improvement. He also woke this morning with a congested chest, so we were sent to the pediatrician to rule out pneumonia. Because of the frequent choking and aspiration, reflux induced pneumonia is always a concern. Thankfully, his chest sounded okay. If the cough worsens, he will get a chest x-ray.
He does seem a little better this morning. After 2 hours he agreed to drink some milk. He was then more willing to eat and drink.
We will watch him to see if the Nexium helps until Friday. If there's no improvement, the GI specialist will set us up with an appointment for us to speak with the general surgeon and decide if the surgery is right for him. Alex's pediatrician has some concerns about the surgery and will be involved in the decision making process, as well.
Friday, July 1, 2011
Pathology Report
Alex's doctor called this morning with the pathology report. The biopsy from his esophagus (which was the one that looked like it might be questionable) showed changes to the esophagus as a result of the reflux. Thankfully, it didn't show some of the other conditions that she was concerned about.
The plan for right now is to keep him on his meds, and switch to rice milk for two weeks. If there isn't a change with the rice milk, then he can go back to soy milk. The doctor is contacting a nutritionist, because we need to add some supplements to the rice milk. He also needs to be on a high (healthy) fat diet and take a multi-vitamin while on the rice milk.
As far as the hiatal hernia surgery, it does look like he'll be having it at some point. The conditions that will implement it are vomitting, pain, and poor weight gain. Since he meets two out of those three conditions at this time, we are going to work with his diet and reassess in September when he goes back. If he gets really sick between now and then, of course that appointment will be moved up. It's a 2-3 hour surgery with a very long recovery for a 2 year old, so everyone would like to put it off as long as possible. It's also not a "cure all." There's no telling how much it will benefit him, and doesn't mean he won't need additional surgery in the future. At this point, it's his next step, though.
This week he's been getting progressively worse - sleep is becoming a nightmare for both of us. We're hoping this weekend brings some improvement.
The plan for right now is to keep him on his meds, and switch to rice milk for two weeks. If there isn't a change with the rice milk, then he can go back to soy milk. The doctor is contacting a nutritionist, because we need to add some supplements to the rice milk. He also needs to be on a high (healthy) fat diet and take a multi-vitamin while on the rice milk.
As far as the hiatal hernia surgery, it does look like he'll be having it at some point. The conditions that will implement it are vomitting, pain, and poor weight gain. Since he meets two out of those three conditions at this time, we are going to work with his diet and reassess in September when he goes back. If he gets really sick between now and then, of course that appointment will be moved up. It's a 2-3 hour surgery with a very long recovery for a 2 year old, so everyone would like to put it off as long as possible. It's also not a "cure all." There's no telling how much it will benefit him, and doesn't mean he won't need additional surgery in the future. At this point, it's his next step, though.
This week he's been getting progressively worse - sleep is becoming a nightmare for both of us. We're hoping this weekend brings some improvement.
Friday, June 24, 2011
Preliminary Findings
Alexander is SUCH a trooper! He has been an AMAZING patient! Because he had already had an endoscopy, we knew what to expect. This really helped us prepare Alexander for what was going to happen. The past few days we talked pleasantly about what was going to happen, and we made sure to reference it as a "procedure." We wanted him to be able to differentiate this experience from regular doctor appointments. He willingly participated in the all of the pre-op procedures and continued to be cooperative when we went into the OR.
His new doctor was very thorough with us after the procedure. She showed us the images from his GI tract and went over everything with us (a very different experience from last time!). So...here's what she found:
The first thing she noted was some excessive bleeding when taking the tissue sample from his esophagus. This was likely indicative of inflammation, and the biopsy report will shed more light on this.
The second thing she noted was that Alexander has a hiatal hernia. The hernia prevents the opening of his stomach from closing all of the way and allows the contents of his somach to rise back up. At the moment, his doctor is on the fence regarding whether or not to surgically correct it. She wants to wait on the pathology report before deciding anything.
If surgery is not done at this time, it is definitely a condition that we will be monitoring and may require correction in the future.
So for now, we wait for the biopsy results and keep Alex happy and comfortable. We should hear back in a week or so.
We could not be more pleased right now with how everything went. Thank you all so much for your prayers and kind words. We felt very at ease this morning and could totally focus on making the process as comfortable as possible for Alex.
His new doctor was very thorough with us after the procedure. She showed us the images from his GI tract and went over everything with us (a very different experience from last time!). So...here's what she found:
The first thing she noted was some excessive bleeding when taking the tissue sample from his esophagus. This was likely indicative of inflammation, and the biopsy report will shed more light on this.
The second thing she noted was that Alexander has a hiatal hernia. The hernia prevents the opening of his stomach from closing all of the way and allows the contents of his somach to rise back up. At the moment, his doctor is on the fence regarding whether or not to surgically correct it. She wants to wait on the pathology report before deciding anything.
If surgery is not done at this time, it is definitely a condition that we will be monitoring and may require correction in the future.
So for now, we wait for the biopsy results and keep Alex happy and comfortable. We should hear back in a week or so.
We could not be more pleased right now with how everything went. Thank you all so much for your prayers and kind words. We felt very at ease this morning and could totally focus on making the process as comfortable as possible for Alex.
Tuesday, June 21, 2011
More questions, few answers
Alexander had his 2 month appointment with the GI Specialist today. We discussed how he was doing with the fiber, and everyone is very pleased with how his lower system is responding. We are going to keep him on one fiber supplement a day and look to increase his fiber some more through the foods he eats.
The doctor was displeased, however, about his reflux. He will be having another endoscopy on Friday. She will be looking over his upper GI tract and taking biopsies from his esophagus. If results from that show that treatment is needed, that will obviously be addressed after his surgery. If not, he will go back again in 2 months.
Also, I was very surprised that he didn't gain any weight. He grew an inch, but didn't gain any weight. We suspect that he lost weight initially with the fiber, and gained it back again.
We just really hope that this endoscopy will shed some light on what's happening with his little system and he doesn't have to go through another of these procedures. As he gets older, he remembers more and more.
The doctor was displeased, however, about his reflux. He will be having another endoscopy on Friday. She will be looking over his upper GI tract and taking biopsies from his esophagus. If results from that show that treatment is needed, that will obviously be addressed after his surgery. If not, he will go back again in 2 months.
Also, I was very surprised that he didn't gain any weight. He grew an inch, but didn't gain any weight. We suspect that he lost weight initially with the fiber, and gained it back again.
We just really hope that this endoscopy will shed some light on what's happening with his little system and he doesn't have to go through another of these procedures. As he gets older, he remembers more and more.
Wednesday, May 18, 2011
One month check-in
Alexander has been taking the fiber supplement for about a month. It has been mixed results. People had warned us that things may get worse before they get better - and that certainly did happen. The first 2 weeks were definitely rough. He endured a lot of stomach pains, vomitting, diarrhea and constipation.
The last two weeks things have settled down a little bit. Even though he is still having a lot of constipation, diarrhea, and a fair amount of discomfort, the episodes are much shorter.
Unfortunately, the fiber is really aggravating his reflux. He is vomiting from time to time again, and has a bad reflux episode with every BM. His sleep has been a bit more disturbed again, too.
So...another month to go. Even though things aren't ideal, we would say that he is definitely healthier overall than he was. We are interested to hear the doctor's interpretation of the changes.
The BM log is invaluable, and I highly recommend it to any parent who is in a similar situation. I have gotten more detailed with commentary on his behavior and overall functioning. It reinforces my statements about the correlation between his GI health and quality of life.
The last two weeks things have settled down a little bit. Even though he is still having a lot of constipation, diarrhea, and a fair amount of discomfort, the episodes are much shorter.
Unfortunately, the fiber is really aggravating his reflux. He is vomiting from time to time again, and has a bad reflux episode with every BM. His sleep has been a bit more disturbed again, too.
So...another month to go. Even though things aren't ideal, we would say that he is definitely healthier overall than he was. We are interested to hear the doctor's interpretation of the changes.
The BM log is invaluable, and I highly recommend it to any parent who is in a similar situation. I have gotten more detailed with commentary on his behavior and overall functioning. It reinforces my statements about the correlation between his GI health and quality of life.
Tuesday, April 19, 2011
Fiber Anyone?
We saw the GI dr this morning. We are going to add a daily fiber supplement to his diet and see if that will help regulate his lower system. His reflux continues to respond wonderfully to the Prevacid/Zantac combination. We will continue to log his bowel movements, and will now log his daily diet, as well.
We go back in 2 months to look over his logs and see how he responds to the fiber supplement. He lost about a pound over the course of this month. It raised some concerns, but it's nothing emergent since he is still okay on the growth charts. His weight will be a prime area of focus on the next visit.
Since I have been home and Alex can eat/sleep as he needs, his temperament and behavior are much improved. He is definitely feeling better day to day, and when he isn't feeling well, we can just take it easy. So things are a bit calmer for Alex right now.
We go back in 2 months to look over his logs and see how he responds to the fiber supplement. He lost about a pound over the course of this month. It raised some concerns, but it's nothing emergent since he is still okay on the growth charts. His weight will be a prime area of focus on the next visit.
Since I have been home and Alex can eat/sleep as he needs, his temperament and behavior are much improved. He is definitely feeling better day to day, and when he isn't feeling well, we can just take it easy. So things are a bit calmer for Alex right now.
Tuesday, April 5, 2011
Results
We did the diet modification for 3 days. During that time, we didn't see any changes and Alexander was becoming dehydrated because he hated the almond milk (he said it was "dirty milk").
After a long wait and far too long on the phone, Alex's lost lab results have been found. He tested negative for parasites, and the pancreas and white blood cell numbers were all normal. So...good news in that respect, but I'm not sure where that leaves us. We'll find out what's next when Alex goes for his appointment on April 19th.
He continues to do relatively well on the Prevacid/Zantac combination. There is still a fair amount of reflux going on, but it seems to not be painful - just uncomfortable.
After a long wait and far too long on the phone, Alex's lost lab results have been found. He tested negative for parasites, and the pancreas and white blood cell numbers were all normal. So...good news in that respect, but I'm not sure where that leaves us. We'll find out what's next when Alex goes for his appointment on April 19th.
He continues to do relatively well on the Prevacid/Zantac combination. There is still a fair amount of reflux going on, but it seems to not be painful - just uncomfortable.
Friday, March 25, 2011
Dentist, Doctor, Diet...
I'd like to start on a very positive note! Alex had his first real visit to the dentist today and did an AWESOME job. While the hygienist didn't thrill him, he was more than cooperative with the dentist. He let her look around, check things out and scrape a few teeth. As we had suspected, there were definite signs of his reflux. Considering his history, however, she was VERY pleased with how everything looked. He will go back in 6 months for another checkup and she just asked that we keep a very close eye on things and call if we see any changes. He will also start on a flouride toothpaste to give him some added protection. He was very pleased with himself, as well! :)
His GI doctor also called back tonight. She is unable to find anyone locally who offers the allergy test she is looking for. She asked that I contact the pediatrician and see if he knows of anyone who may. Boston Children's Hospital and a children's hospital in NYC both have it. At this time, she doesn't think we need to travel for the test. She wants us to do the diet modification and see if there's a change. It is, apparently, a costly and controversial test, which is why it is hard to come by.
His GI doctor also called back tonight. She is unable to find anyone locally who offers the allergy test she is looking for. She asked that I contact the pediatrician and see if he knows of anyone who may. Boston Children's Hospital and a children's hospital in NYC both have it. At this time, she doesn't think we need to travel for the test. She wants us to do the diet modification and see if there's a change. It is, apparently, a costly and controversial test, which is why it is hard to come by.
New Doctor. More Tests.
The appointment didn't go as well as we had hoped, but it was fine. I wanted to wait until I had all of the updated information and my thoughts in order before posting, but, unfortunately, I only have the latter.
She said the upper issues and lower issues are unrelated. Apparently his Xray from the fall showed his intestines completely full of stool (that would have been helpful information to share 6 months ago!). A suspicion is that he becomes completely constipated and only the very loose stool is able to pass - hence the nasty diapers and pain he experiences. She ordered stool samples to check for a variety of things, including to make sure his pancreas is functioning properly (something I have questioned). I dropped the samples off on Wednesday - not sure when we'll hear back.
She also ordered a skin patch allergy test for milk and soy, and a soy-free diet in addition to the milk-free diet he's already on. 2 issues here - 1) I tried to set up the appointment with his allergist for the test and they say it doesn't exist. The two offices are going back and forth at this time and no one has gotten back to me about a resolution. It may be something that is unavailable in our area and requires us to travel. The reason for the patch test is that it is more accurate in showing a GI allergic response than the skin prick. Issue #2 is the diet. I do not feel comfortable completely removing soy from his diet until I speak with his pediatrician and possibly also a dietician. Removing milk has really limited his diet and soy will substantially reduce it even more. His dietary needs at age 2 are different than an adult and I want to ensure he's getting what he needs. The rice milk even states to consult a doctor before giving it to children under 5. His pediatrician is away until next week, so we'll discuss this change at that time.
Last, she said to put all of his meds at night. We have no intention of doing this right away. She seemed to forget about the conversation we had moments earlier about a possible reaction to the full Prevacid dose. It also makes us nervous about how he'll do during the day with no meds in the morning. Again, something we'll talk to his pediatrician about before implementing.
We go back in about a month. We'll analyze the results and make a plan thereafter. If there is no diagnosis by then, she will likely order a full scope of his system. We'll see...
Today we go to the dentist. I'm interested to hear what he says about his teeth. Many reflux children have damage to their teeth from the constant stomach acid rising. It's something we've always known about, so I'm not anxious going in to the appointment, just information we've been wondering about.
So that's the lastest news. As I have only 1 more week left of work, we are more and more confident in our decision for me to resign.
She said the upper issues and lower issues are unrelated. Apparently his Xray from the fall showed his intestines completely full of stool (that would have been helpful information to share 6 months ago!). A suspicion is that he becomes completely constipated and only the very loose stool is able to pass - hence the nasty diapers and pain he experiences. She ordered stool samples to check for a variety of things, including to make sure his pancreas is functioning properly (something I have questioned). I dropped the samples off on Wednesday - not sure when we'll hear back.
She also ordered a skin patch allergy test for milk and soy, and a soy-free diet in addition to the milk-free diet he's already on. 2 issues here - 1) I tried to set up the appointment with his allergist for the test and they say it doesn't exist. The two offices are going back and forth at this time and no one has gotten back to me about a resolution. It may be something that is unavailable in our area and requires us to travel. The reason for the patch test is that it is more accurate in showing a GI allergic response than the skin prick. Issue #2 is the diet. I do not feel comfortable completely removing soy from his diet until I speak with his pediatrician and possibly also a dietician. Removing milk has really limited his diet and soy will substantially reduce it even more. His dietary needs at age 2 are different than an adult and I want to ensure he's getting what he needs. The rice milk even states to consult a doctor before giving it to children under 5. His pediatrician is away until next week, so we'll discuss this change at that time.
Last, she said to put all of his meds at night. We have no intention of doing this right away. She seemed to forget about the conversation we had moments earlier about a possible reaction to the full Prevacid dose. It also makes us nervous about how he'll do during the day with no meds in the morning. Again, something we'll talk to his pediatrician about before implementing.
We go back in about a month. We'll analyze the results and make a plan thereafter. If there is no diagnosis by then, she will likely order a full scope of his system. We'll see...
Today we go to the dentist. I'm interested to hear what he says about his teeth. Many reflux children have damage to their teeth from the constant stomach acid rising. It's something we've always known about, so I'm not anxious going in to the appointment, just information we've been wondering about.
So that's the lastest news. As I have only 1 more week left of work, we are more and more confident in our decision for me to resign.
Monday, March 21, 2011
Brief Update
I received many phone calls from Alexander's doctors last week and they searched for answers for him. They ran a few more urine samples and everything came back okay. Last week, we added Zantac to his nighttime meds because that seems to be the time of greatest trouble for him. So he is on 15mg of Prevacid in the morning, and 15mg of Prevacid with 1tsp of Zantac at night.
*Note for Reflux Moms - if you have enjoyed the ease of dispensing Prevacid because of the enjoyable taste, know that Zantac is not tasty! It actually helps Alex to take it knowing that he can have the Prevacid afterward. It's getting better, but is definitely a challenge.
Alex has been excessively tired for 4 weeks now. It's unclear if it is a growth spurt, a response to increased meds, the body's response to the GI upset, or a heart condition. So many options. Tomorrow we see the new pediatric gastroenterologist. Alexander's pediatrician called today to remind me to call them tomorrow after the appointment to update them. It's nice to know they care. :)
Yesterday at our church, a special healing litany was done for Alexander. It was a very emotional, spiritual, and special time for our family. We were fortunate enough to have a beautiful harp planning during it. The harpist was so sweet and kind - she let Alex play for awhile before and after. He absolutely LOVED it! He plucked cords at home telling me, "Mommy - harp like this!"
I turned in my resignation letter today at work. Friday, April 1st will be my last day. I had planned to resign at the end of the school year, but Alexander's needs have necessitated an early departure. It's definitely bittersweet. Bert and I know it is the right thing to do for Alexander, but after nearly 11 years, there are definitely people I will miss seeing regularly.
*Note for Reflux Moms - if you have enjoyed the ease of dispensing Prevacid because of the enjoyable taste, know that Zantac is not tasty! It actually helps Alex to take it knowing that he can have the Prevacid afterward. It's getting better, but is definitely a challenge.
Alex has been excessively tired for 4 weeks now. It's unclear if it is a growth spurt, a response to increased meds, the body's response to the GI upset, or a heart condition. So many options. Tomorrow we see the new pediatric gastroenterologist. Alexander's pediatrician called today to remind me to call them tomorrow after the appointment to update them. It's nice to know they care. :)
Yesterday at our church, a special healing litany was done for Alexander. It was a very emotional, spiritual, and special time for our family. We were fortunate enough to have a beautiful harp planning during it. The harpist was so sweet and kind - she let Alex play for awhile before and after. He absolutely LOVED it! He plucked cords at home telling me, "Mommy - harp like this!"
I turned in my resignation letter today at work. Friday, April 1st will be my last day. I had planned to resign at the end of the school year, but Alexander's needs have necessitated an early departure. It's definitely bittersweet. Bert and I know it is the right thing to do for Alexander, but after nearly 11 years, there are definitely people I will miss seeing regularly.
Sunday, March 13, 2011
Rollercoaster anyone?
It is starting to look like Alex developed a negative reaction to the meds. Some side effects he had were extreme thirst and hunger, increased fatigue and sleep, episodes of shaking, and other episodes of blue lips w/ cold extremities. Last Thursday we split the dosage so that he would get 15mg in the morning and another 15mg at night. No one can explain why he reacted in such a way, but since we started splitting the dose, these things have all improved. Unfortunately, the medication is not as effective when given in a split dose.
The doctor did a urine test for diabetes, and it came back negative - VERY good news. He will likely still order the fasting bloodwork, but it is encouraging that the symptoms decreased with splitting the meds. We just need to make it 9 more days until we see the new GI doctor. Thankfully, we have a very special 2nd birthday to celebrate between now and then!! :)
The doctor did a urine test for diabetes, and it came back negative - VERY good news. He will likely still order the fasting bloodwork, but it is encouraging that the symptoms decreased with splitting the meds. We just need to make it 9 more days until we see the new GI doctor. Thankfully, we have a very special 2nd birthday to celebrate between now and then!! :)
Thursday, March 3, 2011
Med Update
It's been a week since we doubled the meds. Things definitely got worse before they got better, but we're all still standing! The Prevacid is doing what it's supposed to be doing - but nothing more. It has relieved the pain of the reflux, but Alexander is still refluxing a great deal, particularly at night. It has also reduced the inflammation in his esophagus, and he's transitioning to more normal eating habits. We're very glad he is willing to eat again.
I spoke with his pediatrician today, and the conversation went as expected. He is recommending we reconsider putting him on Reglan. Reglan is the only medication on the market that treats the actual reflux. It's also a highly risky medication and one with very dangerous side effects. We were asked to consider it a year ago. We decided against it at the time, and, thankfully, things calmed a bit for Xan.
We also discussed where to take him for treatment. A new doctor has joined the Pediatric Gastroenterology practice at Albany Med. Though the office leaves a great deal to be desired, everyone agreed that we should give a local doctor one more shot before going out to Boston Children's Hospital. His appointment is for March 22nd. Hopefully things will calm down a bit between now and then.
After the last post, we received a large outpouring of support - cards, emails, phone calls, and many offers for assistance. I can't tell you how moved and appreciative we are. We are incredibly blessed to be surrounded by so many caring and generous individuals. Thank you all so much!!
I spoke with his pediatrician today, and the conversation went as expected. He is recommending we reconsider putting him on Reglan. Reglan is the only medication on the market that treats the actual reflux. It's also a highly risky medication and one with very dangerous side effects. We were asked to consider it a year ago. We decided against it at the time, and, thankfully, things calmed a bit for Xan.
We also discussed where to take him for treatment. A new doctor has joined the Pediatric Gastroenterology practice at Albany Med. Though the office leaves a great deal to be desired, everyone agreed that we should give a local doctor one more shot before going out to Boston Children's Hospital. His appointment is for March 22nd. Hopefully things will calm down a bit between now and then.
After the last post, we received a large outpouring of support - cards, emails, phone calls, and many offers for assistance. I can't tell you how moved and appreciative we are. We are incredibly blessed to be surrounded by so many caring and generous individuals. Thank you all so much!!
Wednesday, February 23, 2011
Deja vu
How could we have accomplished so much in a year to feel like we have ended up in the exact same place?
About 2 weeks ago we noticed a decrease in Alexander's appetite. We took note of it, but since it's not out of the ordinary for a toddler, we didn't make much of it. Last week, his reflux started to flare again. Considering the change in appetite and his age, we figured it was a growth spurt. Growth spurts are known to aggravate GERD. Last Thursday his lower GI tract started to go a little haywire, and we began to get concerned. With all of these issues, though, it's important to watch them for awhile to get better perspective on what's going on.
On Monday, Alex's reflux was absolutely horrendous. I don't recall it being that bad since he was a newborn. While he didn't vomit during the day, there was a sharp decrease in his appetite and he literally refluxed all day. He would just be sitting on the couch and you would hear the stomach acid rising and falling, rising and falling. Sometimes it would come up too much and he would choke. He had a terrible night's sleep and subsequently vomitted violently in his sleep. Tuesday he barely ate - a couple crackers, a bite of a banana, some applesauce and some baby cereal. Last night, another bad night's sleep.
So.....today we were back at the doctor. His Prevacid was doubled to 30mg in the morning. The Prevacid has never been our "miracle drug" - many children have no symptoms while on it. That has never been the case with Alexander, but it certainly made his condition manageable. We will see how the higher dose goes for him.
Some other alternatives that were discussed - 1)Adding an additional medication. They tend to not like combining meds, but it is an option. 2) Seeing a different GI dr at Albany Med. While the doctors there are good, we (and our ped) have run into many issues with the office, and he is not pushing us to return there. 3) Going out to Boston Children's Hospital for a second opinion. The cost is the main hurdle there, but something we will be looking into. Their technology, team, knowledgebase, and approach seem to be phenomenal there. There are doctors that specialize in pediatric GERD - it's all they do.
For right now, we are going to increase his medication and see how he does. If he improves to a manageable state, we'll discuss the other options at his 2 year old checkup in March. If he has a negative reaction or things continue to get worse, we'll have to make a new plan.
So that's the latest and greatest. Thanks for your caring and support!
About 2 weeks ago we noticed a decrease in Alexander's appetite. We took note of it, but since it's not out of the ordinary for a toddler, we didn't make much of it. Last week, his reflux started to flare again. Considering the change in appetite and his age, we figured it was a growth spurt. Growth spurts are known to aggravate GERD. Last Thursday his lower GI tract started to go a little haywire, and we began to get concerned. With all of these issues, though, it's important to watch them for awhile to get better perspective on what's going on.
On Monday, Alex's reflux was absolutely horrendous. I don't recall it being that bad since he was a newborn. While he didn't vomit during the day, there was a sharp decrease in his appetite and he literally refluxed all day. He would just be sitting on the couch and you would hear the stomach acid rising and falling, rising and falling. Sometimes it would come up too much and he would choke. He had a terrible night's sleep and subsequently vomitted violently in his sleep. Tuesday he barely ate - a couple crackers, a bite of a banana, some applesauce and some baby cereal. Last night, another bad night's sleep.
So.....today we were back at the doctor. His Prevacid was doubled to 30mg in the morning. The Prevacid has never been our "miracle drug" - many children have no symptoms while on it. That has never been the case with Alexander, but it certainly made his condition manageable. We will see how the higher dose goes for him.
Some other alternatives that were discussed - 1)Adding an additional medication. They tend to not like combining meds, but it is an option. 2) Seeing a different GI dr at Albany Med. While the doctors there are good, we (and our ped) have run into many issues with the office, and he is not pushing us to return there. 3) Going out to Boston Children's Hospital for a second opinion. The cost is the main hurdle there, but something we will be looking into. Their technology, team, knowledgebase, and approach seem to be phenomenal there. There are doctors that specialize in pediatric GERD - it's all they do.
For right now, we are going to increase his medication and see how he does. If he improves to a manageable state, we'll discuss the other options at his 2 year old checkup in March. If he has a negative reaction or things continue to get worse, we'll have to make a new plan.
So that's the latest and greatest. Thanks for your caring and support!
Thursday, January 20, 2011
Ear Infection Update
Alexander went to the doctor today for a recheck on his ear. It looks like we made the right decision opting out of the antibiotic. It seems to irritate him from time to time, but everything looked great! We are very glad that he is doing so well.
His GI system is still calm in general. He is still having mini flare-ups from time to time, but they are still clearing up within 2 days. We will talk to the doctor about when to try to reintroduce dairy at his physical in March.
His GI system is still calm in general. He is still having mini flare-ups from time to time, but they are still clearing up within 2 days. We will talk to the doctor about when to try to reintroduce dairy at his physical in March.
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