When Simi was a baby, he used to love watching the Wiggles. He was between the ages of 1 and 2 and he'd watch the television screen in a mesmerized state while watching the four Australian men performing their show. When they sang, Simi would dance/bounce along -- with a great big smile on his face. He loved it.
He also watched Barney. Simi LOVED that purple dinosaur.
Asher was also a HUGE fan of the Wiggles and Barney. At the end of each Barney episode, Barney sings the same song and Asher would come up to me and say, "he's singing our song, mommy!" Then Asher and I would sing the song along with Barney and hug and kiss and cuddle. OK, so I'm a big fan of that dancing purple dinosaur too!
Leila would love to watch the Wiggles and Barney if she got the chance. Thing is, Simi and Asher control the television's remote control. The poor girl is growing up watching Ben 10 Alien Force, Transformers Animated, and Go Diego Go! Rather than learn what foods are the most nutritious or how to treat your friends, Leila runs around the house with her hand shaped like a gun, yelling "bam! bam! bam!" while shooting her brothers and imaginary bad guys - just as she sees her big brothers doing.
I wonder how this will affect her personality...
Sunday, April 27, 2008
Thursday, April 24, 2008
The Results Are In
The nurse telephoned with the results of Asher's latest endoscopy. Biopsies reveal three eosinophils (eos) per high-powered field (hpf) in the proximal and 15 eos per hpf in the distal esophagus. Results greater than 15 are bad, which means that Asher just barely squeaked by. Since Asher had over 90 eos per hpf in the distal esophagus in his last scope on October 17th, it's encouraging that the number has gone down that significantly. The general consensus is that it takes a long time for the eos to clear from the esophagus.
In other words, it's a pass. We can begin introducing additional foods into Asher's diet. One at a time, of course. One food, wait two weeks for reaction, then another food, wait another two weeks, add a third food, then scope three months from now.
Once Asher stops vomiting, we'll introduce another food. Right now he chooses bananas, but he's allowed to change his mind.
Asher had an absolutely horrendous afternoon and evening yesterday. He vomited up a storm - from 3 PM to about 6 PM. After there was nothing in his tummy left to vomit, he started to dry heave. His tiny little body shook like crazy while it tried to expel something from its empty stomach. I looked on helplessly, trying desperately to think of some way to help my sweet baby.
In a desperate attempt, I took Asher to the pediatrician's last night to see if there could be a virus or bacterial infection or some sort of medicine to sooth his tummy. No dice. Logic says that it's caused by some irritation due to the endoscopy, so it's best handled by the ped. gastroenterologist. Doctor did suggest giving Benedryl (short term) or Zantac (longer term) to sooth the stomach and help with the vomiting. I had never heard of that before. Something about how they are antihistamines, which suppress the histamine allergic reaction. Oh. good to know. So off I went to give Asher some antihistamine. We'll see if it helps.
In other words, it's a pass. We can begin introducing additional foods into Asher's diet. One at a time, of course. One food, wait two weeks for reaction, then another food, wait another two weeks, add a third food, then scope three months from now.
Once Asher stops vomiting, we'll introduce another food. Right now he chooses bananas, but he's allowed to change his mind.
Asher had an absolutely horrendous afternoon and evening yesterday. He vomited up a storm - from 3 PM to about 6 PM. After there was nothing in his tummy left to vomit, he started to dry heave. His tiny little body shook like crazy while it tried to expel something from its empty stomach. I looked on helplessly, trying desperately to think of some way to help my sweet baby.
In a desperate attempt, I took Asher to the pediatrician's last night to see if there could be a virus or bacterial infection or some sort of medicine to sooth his tummy. No dice. Logic says that it's caused by some irritation due to the endoscopy, so it's best handled by the ped. gastroenterologist. Doctor did suggest giving Benedryl (short term) or Zantac (longer term) to sooth the stomach and help with the vomiting. I had never heard of that before. Something about how they are antihistamines, which suppress the histamine allergic reaction. Oh. good to know. So off I went to give Asher some antihistamine. We'll see if it helps.
Tuesday, April 22, 2008
And While We're Waiting...
While we're waiting for the results of the biopsies, here's a short update of each of the three children:
Simi
Is having a great time in soccer these days. Although he hasn't played it in over two years (and he's six), he's picked it up and is playing like an old pro. Maybe my opinion is skewed, but he seems to be quite the athlete. He is, by far, more advanced in gymnastics than his kindergarten classmates. We should really move him up to the more advanced level - for both his and his classmates sake. I just wish those classes weren't full.
With all the household talk about Asher visiting the hospital for his endoscopy, Simi began talking about when he was in the hospital to have his heart fixed. It's amazing how much he remembers - and the items he remembers - considering that it happened two-and-a-half years ago and that it happened before his fourth birthday. And he remembers it with distinct clarity!
He remembers the nurse removing the Foley the day after his heart surgery - and how it burned and made him feel like he had to pee. And he remembers getting out of bed and trying to pee. After Simi told me that memory, I too, remembered it - just like he did. I guess it left a significant impression on him for him to remember it that distinctly!
He also remembers how terrible the macaroni and cheese tasted in the hospital. It must have been really bad!
I wish I could remember all the other memories he mentioned. Gosh, I wish I had his memory!
Leila
Is our head-strong, super high maintenance child. Good golly, this girl is STUBBORN! She just doesn't quit until she gets what she wants! She is also as sweet as honey - when she wants to be. Here is a conversation we have frequently:
me: "Leila, you are absolutely adorable!"
Leila: "I'm not adorable, Asher's adorable."
me: "You're adorable too, you know."
Leila: "No, I'm not adorable. Simi's adorable." (says with a grin...)
Asher
Has started vomiting regularly after meals since the endoscopy. That's not a good sign. He either vomits - or wants to vomit - while eating every day since the endoscopy. Yesterday I telephoned the GI doctor on call to see if it was endoscopy related. Before I could even get the full sentence out, he tells me that the vomiting is not endoscopy-related (why do they put it on the release sheet then, to call if vomiting?), and that it's probably related to the reason why he was scoped. He asked why Asher was scoped. "He has eosinophilic esophagitis", was my reply. "Oh, well that explains it", says the ped. GI Doctor on call. "That's the reason he's vomiting." Shucks.
So, we're expecting poor biopsy results. Which may explain why Asher is always tired. And has low energy. And poor cognitive skills. Deep, deep, deep sigh.
Simi
Is having a great time in soccer these days. Although he hasn't played it in over two years (and he's six), he's picked it up and is playing like an old pro. Maybe my opinion is skewed, but he seems to be quite the athlete. He is, by far, more advanced in gymnastics than his kindergarten classmates. We should really move him up to the more advanced level - for both his and his classmates sake. I just wish those classes weren't full.
With all the household talk about Asher visiting the hospital for his endoscopy, Simi began talking about when he was in the hospital to have his heart fixed. It's amazing how much he remembers - and the items he remembers - considering that it happened two-and-a-half years ago and that it happened before his fourth birthday. And he remembers it with distinct clarity!
He remembers the nurse removing the Foley the day after his heart surgery - and how it burned and made him feel like he had to pee. And he remembers getting out of bed and trying to pee. After Simi told me that memory, I too, remembered it - just like he did. I guess it left a significant impression on him for him to remember it that distinctly!
He also remembers how terrible the macaroni and cheese tasted in the hospital. It must have been really bad!
I wish I could remember all the other memories he mentioned. Gosh, I wish I had his memory!
Leila
Is our head-strong, super high maintenance child. Good golly, this girl is STUBBORN! She just doesn't quit until she gets what she wants! She is also as sweet as honey - when she wants to be. Here is a conversation we have frequently:
me: "Leila, you are absolutely adorable!"
Leila: "I'm not adorable, Asher's adorable."
me: "You're adorable too, you know."
Leila: "No, I'm not adorable. Simi's adorable." (says with a grin...)
Asher
Has started vomiting regularly after meals since the endoscopy. That's not a good sign. He either vomits - or wants to vomit - while eating every day since the endoscopy. Yesterday I telephoned the GI doctor on call to see if it was endoscopy related. Before I could even get the full sentence out, he tells me that the vomiting is not endoscopy-related (why do they put it on the release sheet then, to call if vomiting?), and that it's probably related to the reason why he was scoped. He asked why Asher was scoped. "He has eosinophilic esophagitis", was my reply. "Oh, well that explains it", says the ped. GI Doctor on call. "That's the reason he's vomiting." Shucks.
So, we're expecting poor biopsy results. Which may explain why Asher is always tired. And has low energy. And poor cognitive skills. Deep, deep, deep sigh.
Thursday, April 17, 2008
And Now We Wait...
Asher's endoscopy was today. Because he was added on at the very last minute, the poor kid was the very last patient of the day. And because the gastroenterologist was running about two hours behind, Asher's endoscopy started around 6:00 PM. He hadn't had a thing to eat since 8:45 AM (he's FOUR!) and didn't have a nap and he was an amazing trooper. I've never met a more easy-going kid in my life.
We lucked out on anesthesiologists. We had the same anesthesiologist as we had last year. I recognized him and remembered what a great recovery Asher had from anesthesia. He looked up the records and - sure enough - he was the same guy. So he mixed up the same anesthesia recipe as last time. And the recovery was just as nice. Now we have a perfect anesthesia recipe for Asher - just what every four year-old should have.
Every one knows us at this hospital. I know it sounds rather pathetic, but I find comfort in it. The woman at the information desk - Kathy - lights up and gives us a great big hug when we walk past her desk. Today she gave Asher a beautiful soft stuffed lion. Asher named it "Ligy", and hugged Ligy and held him for the rest of the day. We meant to bring him into the procedure room with us, but he managed to get left behind somehow. Not to worry, Ligy was there when Asher awoke from his anesthesia cocktail.
The OR nurse, Katherine, has been taking care of my kids in the OR for the past six years. We hug, catch up on each other's lives, and when it's our turn, she takes great care of Asher during his endoscopy. I know my baby is safe in her care. I walk into the procedure room with Asher and I hold him and sing to him as he drifts off to sleep. Then I leave the room knowing that Katherine is there to care for him. When the procedure is over, she comes to get me and bring me to his bed so that I can be with him for when he wakes up. I know that my baby is in good hands.
Being the last patient has its advantages. Today, Asher's pediatric GI doctor and I were able to chat for a solid 30 minutes. Any other time of day, he has about two minutes to talk before he rushes off to another patient. It was blissful to get the opportunity to sit in the conference area and and talk with him.
Perhaps you can tell: we didn't go to Cincinnati this time. We tried. Good golly, I can't imagine trying any harder than we have! Truthfully, we've had a really difficult time getting care from them. No matter how much we tried, we weren't able to talk with the doctor after Asher's last horrendous scope to get a plan of action. We struggled to talk to someone - anyone - after Asher lost the use of his arms and legs and I suspected the huge dose of Flovent he prescribed to be the culprit. I was told to go to my pediatrician, even though the ped. gastroenterologist in Cincinnati was the prescribing physician. And six months of struggling to get an endoscopy date has ended up in failure. I can't imagine getting worse care than this. Which led us back to Duke Children's. And like I mentioned, we know the place. We know where to park so that the walk is a mere feet from the entrance instead of blocks away. And it's so close to our house. It's a five minute drive - instead of a two day excursion. Can't beat that. And they know us. Maybe we'll stick with them for awhile.
And now we wait for the biopsy report. It should be back within the week. Stay tuned for the results...
We lucked out on anesthesiologists. We had the same anesthesiologist as we had last year. I recognized him and remembered what a great recovery Asher had from anesthesia. He looked up the records and - sure enough - he was the same guy. So he mixed up the same anesthesia recipe as last time. And the recovery was just as nice. Now we have a perfect anesthesia recipe for Asher - just what every four year-old should have.
Every one knows us at this hospital. I know it sounds rather pathetic, but I find comfort in it. The woman at the information desk - Kathy - lights up and gives us a great big hug when we walk past her desk. Today she gave Asher a beautiful soft stuffed lion. Asher named it "Ligy", and hugged Ligy and held him for the rest of the day. We meant to bring him into the procedure room with us, but he managed to get left behind somehow. Not to worry, Ligy was there when Asher awoke from his anesthesia cocktail.
The OR nurse, Katherine, has been taking care of my kids in the OR for the past six years. We hug, catch up on each other's lives, and when it's our turn, she takes great care of Asher during his endoscopy. I know my baby is safe in her care. I walk into the procedure room with Asher and I hold him and sing to him as he drifts off to sleep. Then I leave the room knowing that Katherine is there to care for him. When the procedure is over, she comes to get me and bring me to his bed so that I can be with him for when he wakes up. I know that my baby is in good hands.
Being the last patient has its advantages. Today, Asher's pediatric GI doctor and I were able to chat for a solid 30 minutes. Any other time of day, he has about two minutes to talk before he rushes off to another patient. It was blissful to get the opportunity to sit in the conference area and and talk with him.
Perhaps you can tell: we didn't go to Cincinnati this time. We tried. Good golly, I can't imagine trying any harder than we have! Truthfully, we've had a really difficult time getting care from them. No matter how much we tried, we weren't able to talk with the doctor after Asher's last horrendous scope to get a plan of action. We struggled to talk to someone - anyone - after Asher lost the use of his arms and legs and I suspected the huge dose of Flovent he prescribed to be the culprit. I was told to go to my pediatrician, even though the ped. gastroenterologist in Cincinnati was the prescribing physician. And six months of struggling to get an endoscopy date has ended up in failure. I can't imagine getting worse care than this. Which led us back to Duke Children's. And like I mentioned, we know the place. We know where to park so that the walk is a mere feet from the entrance instead of blocks away. And it's so close to our house. It's a five minute drive - instead of a two day excursion. Can't beat that. And they know us. Maybe we'll stick with them for awhile.
And now we wait for the biopsy report. It should be back within the week. Stay tuned for the results...
Tuesday, April 15, 2008
Scheduled Scope
Asher's next scheduled endoscopy is this Thursday. Please think positive thoughts that he'll have an eosinophil-free endoscopy....
Friday, April 11, 2008
One Step Forward, Ten Steps Back
It was approximately six months ago, around the middle of October, when we learned that Asher had some motor skills delays. The Occupational Therapist evaluated him and put his skill level at the age of a 38 month old (he was 49 months old at the time).
We started occupational therapy, physical therapy, gymnastics, swimming, and we worked with him at home. In all, we made sure he had an hour of strenous activity five days a week. We also worked his hands with Theraputty to strengthen his hands/grip/ability to hold a pencil.
On Wednesday, the Occupational Therapist re-evaluated him. The result: his skill level is that of a 39 month old. He is now 54 months old. All that work and it hasn't helped him. Not one single bit.
It reminds me of when Asher was a baby - before we got the EE diagnosis. He wouldn't eat solid food. Actually, he tried to eat solid food, but it hurt so he'd stop. We took him to feeding therapy every week for months. The therapist said he had "x" disorder, he had "y" disorder. I continually said, "I think it hurts him. I think it's something physical." Finally, after many months of this insane feeding therapy, I said, "what Asher has is physical. He won't eat until we fix the pain." That led us to the ee diagnosis, the flovent, and then Asher quickly started eating solid foods.
I can't help but think there's something physical going on now, too, with Asher, to make it hard for his muscles to work. It's hard for him to get out of bed in the morning. It's hard for him to get moving. As much as he wants to do it, he just can't.
It's not lost on me that he's stuck at the 38/39 month old timeframe. That's about how old he was when we started the elemental diet.
I may be wrong; but I remember Asher being quite the athletic little monkey before his third birthday. I have photos of his second and third birthday parties at The Little Gym to prove it. So...what happened around 38 months to cause him to stop progressing?
We're off to find what else is wrong with Asher.
We started occupational therapy, physical therapy, gymnastics, swimming, and we worked with him at home. In all, we made sure he had an hour of strenous activity five days a week. We also worked his hands with Theraputty to strengthen his hands/grip/ability to hold a pencil.
On Wednesday, the Occupational Therapist re-evaluated him. The result: his skill level is that of a 39 month old. He is now 54 months old. All that work and it hasn't helped him. Not one single bit.
It reminds me of when Asher was a baby - before we got the EE diagnosis. He wouldn't eat solid food. Actually, he tried to eat solid food, but it hurt so he'd stop. We took him to feeding therapy every week for months. The therapist said he had "x" disorder, he had "y" disorder. I continually said, "I think it hurts him. I think it's something physical." Finally, after many months of this insane feeding therapy, I said, "what Asher has is physical. He won't eat until we fix the pain." That led us to the ee diagnosis, the flovent, and then Asher quickly started eating solid foods.
I can't help but think there's something physical going on now, too, with Asher, to make it hard for his muscles to work. It's hard for him to get out of bed in the morning. It's hard for him to get moving. As much as he wants to do it, he just can't.
It's not lost on me that he's stuck at the 38/39 month old timeframe. That's about how old he was when we started the elemental diet.
I may be wrong; but I remember Asher being quite the athletic little monkey before his third birthday. I have photos of his second and third birthday parties at The Little Gym to prove it. So...what happened around 38 months to cause him to stop progressing?
We're off to find what else is wrong with Asher.
Sunday, April 06, 2008
Asher Update
It's been an unusually quiet week...and we haven't had an Asher update in awhile. So...here it is:
I've been struggling to get Asher's next endoscopy scheduled. The protocol is for for him to be "scoped" every three months. Since Asher's last endoscopy was October 17th 2007, we're getting very close to six months post scope now. Unfortunately, my calls and emails to Cincinnati Children's go answered. So much for quality medical care.
Although we're still in the throes of pollen season, I think we have Asher's environmental allergies under control and he's back to feeling fine again. A nebulizer full of Pulmicort Respules (I love that name!), a nose full of Flonaise, and a netti pot to clear out the sinuses have been doing the job for the kid.
We haven't added any additional food into Asher's diet. Instead, we've added vitamins. Asher has been struggling with muscle weakness and shaky hands. The shaky hands - it really looks like the kid has Parkinson-like symptoms, which is pretty scary considering he's a mere 4 years old. It's been scaring the daylights out of me - watching my sweet boy acting clumsy and falling down all the time, unable to go up/down stairs, unable to keep up with his friends on the playground, and unable to hold his cup of milk in the morning because his hands are shaking too hard. Many of the other families with EE children mention that EE and mitochondrial disease are related - and that scares the daylights out of me. Honestly, all of this stuff has overwhelmed me. I just don't know where to turn. I talk with our pediatrician, who also doesn't know. I have been feeling like we're on our own.
So I've been reading. And reading. And while I'm not sure if this is the cause, I've learned that Asher isn't getting the nutrition he needs. He's only getting one-half of the recommended daily allowance of the most needed vitamins, like calcium, vitamin A, zinc, etc. Plus, there are tons of minerals and nutrients that are normally found in food - which aren't found in his elemental formula. I wonder if the lack of sufficient vitamins, minerals, etc. is causing the problems we're seeing in the kid right now. It seems logical to me that if your muscles aren't getting the nutrients they need, then they're just not going to be able to function correctly. Same with the brain.
I found some children's multi-vitamins made of non-allergenic materials and have been giving them to Asher, along with some zinc (to help him think), coenzyme-Q10 (to help with the mitochondrial-like symptoms), Three-lac (to kill the yeast), and calcium (because everybody needs calcium). Interestingly, he seems better after a mere couple of days on the vitamins. He also seems to be doing age-appropriately on the cognitive development work I've been doing with him. Perhaps it's coincidence or perhaps the supplements are actually working, but it's enough to make me want to continue down this path. We're off to find an integrative medicine doctor to help us identify the right course of treatment for this kid.
I've been struggling to get Asher's next endoscopy scheduled. The protocol is for for him to be "scoped" every three months. Since Asher's last endoscopy was October 17th 2007, we're getting very close to six months post scope now. Unfortunately, my calls and emails to Cincinnati Children's go answered. So much for quality medical care.
Although we're still in the throes of pollen season, I think we have Asher's environmental allergies under control and he's back to feeling fine again. A nebulizer full of Pulmicort Respules (I love that name!), a nose full of Flonaise, and a netti pot to clear out the sinuses have been doing the job for the kid.
We haven't added any additional food into Asher's diet. Instead, we've added vitamins. Asher has been struggling with muscle weakness and shaky hands. The shaky hands - it really looks like the kid has Parkinson-like symptoms, which is pretty scary considering he's a mere 4 years old. It's been scaring the daylights out of me - watching my sweet boy acting clumsy and falling down all the time, unable to go up/down stairs, unable to keep up with his friends on the playground, and unable to hold his cup of milk in the morning because his hands are shaking too hard. Many of the other families with EE children mention that EE and mitochondrial disease are related - and that scares the daylights out of me. Honestly, all of this stuff has overwhelmed me. I just don't know where to turn. I talk with our pediatrician, who also doesn't know. I have been feeling like we're on our own.
So I've been reading. And reading. And while I'm not sure if this is the cause, I've learned that Asher isn't getting the nutrition he needs. He's only getting one-half of the recommended daily allowance of the most needed vitamins, like calcium, vitamin A, zinc, etc. Plus, there are tons of minerals and nutrients that are normally found in food - which aren't found in his elemental formula. I wonder if the lack of sufficient vitamins, minerals, etc. is causing the problems we're seeing in the kid right now. It seems logical to me that if your muscles aren't getting the nutrients they need, then they're just not going to be able to function correctly. Same with the brain.
I found some children's multi-vitamins made of non-allergenic materials and have been giving them to Asher, along with some zinc (to help him think), coenzyme-Q10 (to help with the mitochondrial-like symptoms), Three-lac (to kill the yeast), and calcium (because everybody needs calcium). Interestingly, he seems better after a mere couple of days on the vitamins. He also seems to be doing age-appropriately on the cognitive development work I've been doing with him. Perhaps it's coincidence or perhaps the supplements are actually working, but it's enough to make me want to continue down this path. We're off to find an integrative medicine doctor to help us identify the right course of treatment for this kid.
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