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.
Friday, March 25, 2011
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!!
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