I wish Alexander was able to enjoy this weekend more. He had some nice visits with family and friends yesterday in his costume. I know we all enjoyed seeing him dressed up more than he did. Today, he was able to have a good visit with his Grandma, but really tanked shortly thereafter.
His appetite has been down the past few days, and this afternoon/evening, he has been having terrible gas pains. He is in so much pain - it is so sad. The past few days have also shown some questionable diapers. We are calling the doctor in the morning and requesting the Celiac bloodwork. Hopefully, we will be able to get it done Tuesday and have that piece done. We will see if it'll be that easy.
As a plus for Alex, since he can't have candy, he has received a number of Halloween gifts from family and friends! Many new and fun things to enjoy, and lots of new ORANGE things!! (his favorite color).
Sunday, October 31, 2010
Sunday, October 24, 2010
An update...
I have received a number of emails looking for an update on Alexander, so here it is...
As far as Alex's lower GI tract - he had a very good week. It wasn't ideal, but it was definitely acceptable and seemed to be headed in the right direction. Yesterday and today began to look questionable, so we will see what this week brings. Hopefully, it's just a little dip in the healing process, and things will look up again this week.
Alex is walking a very fine line between needing to go back on meds for his upper GI tract. His reflux has definitely been worse these past 2 weeks. It has been flairing up daily. The "fine line" comes in because sometimes it is painful for him, and other times it is painless. The one area of most concern at the moment is the reflux in his sleep. I think it's actually safer for him if it is painful while he is sleeping. "Why?" you ask. Because he wakes up and sits up. Whereas when he vomits in his sleep and it's painless, he is more likely to aspirate because he doesn't wake.
Prevacid is the med that controls the burning. Reglan is the med that controls the tone of his stomach and prevents the reflux from occuring. Reglan is also a very dangerous medication and one we are trying desperately to avoid.
We don't really care for any of these med options, so we're choosing option 3 - Alex quickly grows out of this and it is no longer an issue!
In spite of his troubles, Alexander is doing really well. He has been happy, chatty and mischievous - as you'd expect any 19 month old to be. He is continuing to gain weight nicely and is looking healthy. He even has a little bit of fat on his belly you can pinch now!
Combine Alex's love of the outdoors with his love of the color orange, and you can imagine how much fun he is having this fall! We're excited to make some visits this Halloween weekend and I'll be making a special treat for Alex to enjoy.
Thank you all so much for your continued love, support, and prayers. They are truly appreciated!
As far as Alex's lower GI tract - he had a very good week. It wasn't ideal, but it was definitely acceptable and seemed to be headed in the right direction. Yesterday and today began to look questionable, so we will see what this week brings. Hopefully, it's just a little dip in the healing process, and things will look up again this week.
Alex is walking a very fine line between needing to go back on meds for his upper GI tract. His reflux has definitely been worse these past 2 weeks. It has been flairing up daily. The "fine line" comes in because sometimes it is painful for him, and other times it is painless. The one area of most concern at the moment is the reflux in his sleep. I think it's actually safer for him if it is painful while he is sleeping. "Why?" you ask. Because he wakes up and sits up. Whereas when he vomits in his sleep and it's painless, he is more likely to aspirate because he doesn't wake.
Prevacid is the med that controls the burning. Reglan is the med that controls the tone of his stomach and prevents the reflux from occuring. Reglan is also a very dangerous medication and one we are trying desperately to avoid.
We don't really care for any of these med options, so we're choosing option 3 - Alex quickly grows out of this and it is no longer an issue!
In spite of his troubles, Alexander is doing really well. He has been happy, chatty and mischievous - as you'd expect any 19 month old to be. He is continuing to gain weight nicely and is looking healthy. He even has a little bit of fat on his belly you can pinch now!
Combine Alex's love of the outdoors with his love of the color orange, and you can imagine how much fun he is having this fall! We're excited to make some visits this Halloween weekend and I'll be making a special treat for Alex to enjoy.
Thank you all so much for your continued love, support, and prayers. They are truly appreciated!
Friday, October 15, 2010
We are blessed...
We are blessed to have such a wonderful pediatrician! He called me today before he left for Boston. He was able to speak with the specialist and get Alexander's chart straightened out. He went over with me what changes were made and verified that everything he had said was accurate. Everyone is in agreement that we will not do anything for the time being. It seems like Alex's lower GI tract may be settling down, and everyone wants to see how long this lasts before any more testing is done. The specialist also agreed to the Celiac blood work when he flares again. A simple blood test seems like a more logical step than more scoping right away. If they can keep Alex's file straightened out, we have slightly more faith in another visit to Albany Med.
We are blessed to have so many caring friends and family. Many people have reached out to us. In just the short time that this blog has been up, we've heard about specialists throughout the country that may be able to offer us assistance. We have had prayers given on our behalf and received words of encouragement. We have been offered sympathetic ears and warm embraces.
We are blessed that Alex's condition is not more serious and has not affected his development. Many children with Alex's conditions (particularly this lower GI issue) have developmental delays from the malnurishment. His pediatrician always remarks on how impressed he is with Alex's development and how lucky we are that he isn't having developmental issues. For some kids, that's what it takes for more intervention to happen.
We continue to teeter with the reflux issue, but are grateful that things are a little quieter for the moment. We are trying to enjoy this lull, but it's very hard to not be anxious about when "the other shoe will drop." Thank you all for your support.
We are blessed to have so many caring friends and family. Many people have reached out to us. In just the short time that this blog has been up, we've heard about specialists throughout the country that may be able to offer us assistance. We have had prayers given on our behalf and received words of encouragement. We have been offered sympathetic ears and warm embraces.
We are blessed that Alex's condition is not more serious and has not affected his development. Many children with Alex's conditions (particularly this lower GI issue) have developmental delays from the malnurishment. His pediatrician always remarks on how impressed he is with Alex's development and how lucky we are that he isn't having developmental issues. For some kids, that's what it takes for more intervention to happen.
We continue to teeter with the reflux issue, but are grateful that things are a little quieter for the moment. We are trying to enjoy this lull, but it's very hard to not be anxious about when "the other shoe will drop." Thank you all for your support.
Wednesday, October 13, 2010
Love our Pediatrician!!
So we saw the pediatrician this morning. First he addressed the current reflux issue. Because the reflux is not presently causing Alexander pain, we are going to keep him off meds. We will continue to keep an eye on it, and if any pain occurs or blood returns, he'll have to go back on meds. Our doctor continued to reassure me that they would be able to get approval for Prevacid if Alex needed to be back on something.
Then we turned our attention to the issue with the specialist. He was sadly not surprised to hear about my issue, as they have had many similar issues. I was shocked to hear that none of Alex's previous test results were sent to his pediatrician. They had requested them (the doctor had personally called for results) and never received any word. He encouraged me (three times) to seek another opinion; to have fresh eyes look at Alex's history. He suggested going to Boston. Our pediatrician will actually be out in Boston this weekend, and said he would talk to the doctors out there and see who they use. He had some names that he had referred to in the past, but wanted to make sure they were still practicing out there.
He will also be calling the specialist either tomorrow or next week to personally clear up Alex's history and decide on a course of treatment. He was baffled as to why the specialist wouldn't order a simple blood test. So, as a mom, I felt very supported after our visit and it was comforting to be validated in the midst of all of this. As a bonus, Alex was finally able to get his 18 month shots and flu vaccine. He was also able to stop at his child care provider's for a playdate after the appointment. He's sleeping comfortably at the moment, and hopefully he'll continue to feel well.
Then we turned our attention to the issue with the specialist. He was sadly not surprised to hear about my issue, as they have had many similar issues. I was shocked to hear that none of Alex's previous test results were sent to his pediatrician. They had requested them (the doctor had personally called for results) and never received any word. He encouraged me (three times) to seek another opinion; to have fresh eyes look at Alex's history. He suggested going to Boston. Our pediatrician will actually be out in Boston this weekend, and said he would talk to the doctors out there and see who they use. He had some names that he had referred to in the past, but wanted to make sure they were still practicing out there.
He will also be calling the specialist either tomorrow or next week to personally clear up Alex's history and decide on a course of treatment. He was baffled as to why the specialist wouldn't order a simple blood test. So, as a mom, I felt very supported after our visit and it was comforting to be validated in the midst of all of this. As a bonus, Alex was finally able to get his 18 month shots and flu vaccine. He was also able to stop at his child care provider's for a playdate after the appointment. He's sleeping comfortably at the moment, and hopefully he'll continue to feel well.
Tuesday, October 12, 2010
Frustration...
The screw-ups in Alexander's pediatric GI office continue. I had a nice argument with the nurse there this morning. Last week we were planning to schedule Alex for another endoscopy and a colonoscopy to screen for Celiac Disease, and to see if anything else was going on. This morning she calls and says that Celiac has been "ruled out" because he already had an endoscopy in July. "But he wasn't on wheat then," I said. "Yes he was," says the nurse. "No he wasn't," I say. "Yes he was. The doctor said he was," says the nurse.
So they referred him for an abdominal X-ray to look for a blockage. I called his pediatrician in my frustration about not being listened to and my confusion about why they are SO screwed up over there. We're seeing the pediatrician in the morning. He had his abdominal X-ray this afternoon, but no results yet.
He has been having trouble with his reflux over the past week. His pediatrician is looking to put him back on a med tomorrow when we meet. We hate the thought of him on meds again, but it seems to be necessary for atleast the time being. I am glad that we had the time "off meds," though, so we could see how he would do.
So they referred him for an abdominal X-ray to look for a blockage. I called his pediatrician in my frustration about not being listened to and my confusion about why they are SO screwed up over there. We're seeing the pediatrician in the morning. He had his abdominal X-ray this afternoon, but no results yet.
He has been having trouble with his reflux over the past week. His pediatrician is looking to put him back on a med tomorrow when we meet. We hate the thought of him on meds again, but it seems to be necessary for atleast the time being. I am glad that we had the time "off meds," though, so we could see how he would do.
Sunday, October 10, 2010
Alex's Story
***This post is intended for anyone who wants more information on Alex's GI history and for anyone who may be having similar struggles with their child. Feel free to ignore it, or contact me if you have any questions.***
Though I had a relatively eventless pregnancy, my labor was full of excitement and Alexander was born via emergency c-section. By the second day he was doing well with nursing, but wanted to feed very often. Additionally, he was deemed "inconsolable" in the hospital nursery and they would only have him there for his daily checkup.
After 4 days, we were able to go home. While home, Alexander never slept. Now people say that a lot about newborns, but he literally never slept. You could get 20-40 minutes (max) if you held him - which had to be done constantly. Whenever he was put down he would scream - not that sweet little baby cry, but what you'd expect to hear from a toddler who's just fallen head first into the pavement. There were many days when he would cry no matter what I tried. There was one day that he cried for over 20 hours. Additionally, whenever he ate, he'd projectile vomit everything back up. So it was this constant cycle of screaming, feeding, vomitting, and screaming again.
At a week old, Alex was diagnosed with Acid Reflux and started on Tagamet. Instead of throwing up every feeding, he'd only vomit a few times a day. After a few months, he was switched to a different formula (Enfamil AR) because it was thicker and would coat his stomach better. With that switch he only threw up one to two times a day. [Due to Alex's reflux and mismanagement of my health at the hospital, Alex was unable to nurse for more than a few days. Yes, this was devastating to me.]
Throughout this time, as well, Alex continued to struggle with sleep. Laying down aggravated his reflux terribly, and he would constantly "comfort feed" to settle his stomach. Additionally, Alex had a slew of lower GI issues simultaneously. It took many weeks to get the right balance of powdered formula and ready-made formula. Too much powder would constipate him and too much ready-made would give him diarrhea. He also consistently had low-grade temps.
Things seemed to regulate themselves between 3 and 6 months. From 6 to 9 months things were great! At 9 months, however, everything tanked and we're still digging ourselves out of this mess. Just before Christmas, he developed a rash on his face and his reflux went out of control. By the beginning of January, he started losing weight from constant diarrhea. By the second week of January he was in terrible pain and had become listless. He was switched to Prevacid which helped control his reflux. After a few days, his doctor took him off of milk and switched to soy - immediate turn around! We thought, "Problems solved."
Not quite. Since then it has been this rollercoaster of lower GI issues (with sporadic reflux) that never seems to end. He has had bouts of spitting up blood and some blood in his diaper. It was suspected that the spitting up was caused by the acid reflux burning the tissue in his esophagus. It was also suspected that he had developed colitis from the aggravation to his lower GI tract causing the blood in the diaper.
By March he was taken off of all wheat products and referred to a Pediatric Gastroenterologist. Because it is such a busy practice, it took until the end of June to get in to see him. While we waited, Alex was allergy tested for all the major allergens (we thought for SURE the milk allergy would come back positive.) Nada. No allergies. When he saw the specialist, he was referred for an upper GI and an endoscopy with biopsy. He had to be awake for the upper GI and it was absolute torture for all involved. The endoscopy was concerning because he was under general anesthesia. His procedures went well, and other than the upper GI confirming horrible reflux, no results.
At the time, his lower GI tract seemed to calm down for no known reason, so everyone thought it had just resolved itself. He was put back on wheat and was even able to tolerate milk cooked in food (like, banana bread, etc.) In late July, we received word from our insurance company that they were not going to cover his Prevacid anymore and we had to switch to a generic (Prilosec). After 5 days, Alex was taken off of the generic due to a nasty reaction (diarrhea, headaches, photosensitivity). We decided to try him off of meds, and while his reflux has been manageable with diet modification, his lower GI system has yet to regulate itself again. He is now off of all milk products again, and no one can seem to come up with any "good leads" as to what is going on.
Though I had a relatively eventless pregnancy, my labor was full of excitement and Alexander was born via emergency c-section. By the second day he was doing well with nursing, but wanted to feed very often. Additionally, he was deemed "inconsolable" in the hospital nursery and they would only have him there for his daily checkup.
After 4 days, we were able to go home. While home, Alexander never slept. Now people say that a lot about newborns, but he literally never slept. You could get 20-40 minutes (max) if you held him - which had to be done constantly. Whenever he was put down he would scream - not that sweet little baby cry, but what you'd expect to hear from a toddler who's just fallen head first into the pavement. There were many days when he would cry no matter what I tried. There was one day that he cried for over 20 hours. Additionally, whenever he ate, he'd projectile vomit everything back up. So it was this constant cycle of screaming, feeding, vomitting, and screaming again.
At a week old, Alex was diagnosed with Acid Reflux and started on Tagamet. Instead of throwing up every feeding, he'd only vomit a few times a day. After a few months, he was switched to a different formula (Enfamil AR) because it was thicker and would coat his stomach better. With that switch he only threw up one to two times a day. [Due to Alex's reflux and mismanagement of my health at the hospital, Alex was unable to nurse for more than a few days. Yes, this was devastating to me.]
Throughout this time, as well, Alex continued to struggle with sleep. Laying down aggravated his reflux terribly, and he would constantly "comfort feed" to settle his stomach. Additionally, Alex had a slew of lower GI issues simultaneously. It took many weeks to get the right balance of powdered formula and ready-made formula. Too much powder would constipate him and too much ready-made would give him diarrhea. He also consistently had low-grade temps.
Things seemed to regulate themselves between 3 and 6 months. From 6 to 9 months things were great! At 9 months, however, everything tanked and we're still digging ourselves out of this mess. Just before Christmas, he developed a rash on his face and his reflux went out of control. By the beginning of January, he started losing weight from constant diarrhea. By the second week of January he was in terrible pain and had become listless. He was switched to Prevacid which helped control his reflux. After a few days, his doctor took him off of milk and switched to soy - immediate turn around! We thought, "Problems solved."
Not quite. Since then it has been this rollercoaster of lower GI issues (with sporadic reflux) that never seems to end. He has had bouts of spitting up blood and some blood in his diaper. It was suspected that the spitting up was caused by the acid reflux burning the tissue in his esophagus. It was also suspected that he had developed colitis from the aggravation to his lower GI tract causing the blood in the diaper.
By March he was taken off of all wheat products and referred to a Pediatric Gastroenterologist. Because it is such a busy practice, it took until the end of June to get in to see him. While we waited, Alex was allergy tested for all the major allergens (we thought for SURE the milk allergy would come back positive.) Nada. No allergies. When he saw the specialist, he was referred for an upper GI and an endoscopy with biopsy. He had to be awake for the upper GI and it was absolute torture for all involved. The endoscopy was concerning because he was under general anesthesia. His procedures went well, and other than the upper GI confirming horrible reflux, no results.
At the time, his lower GI tract seemed to calm down for no known reason, so everyone thought it had just resolved itself. He was put back on wheat and was even able to tolerate milk cooked in food (like, banana bread, etc.) In late July, we received word from our insurance company that they were not going to cover his Prevacid anymore and we had to switch to a generic (Prilosec). After 5 days, Alex was taken off of the generic due to a nasty reaction (diarrhea, headaches, photosensitivity). We decided to try him off of meds, and while his reflux has been manageable with diet modification, his lower GI system has yet to regulate itself again. He is now off of all milk products again, and no one can seem to come up with any "good leads" as to what is going on.
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