The results of both Simi and Asher's endoscopies are back:
Simi is fine: no eosinophils. He does not share Asher's allergy. Phew!
Asher's eosinophilic esophagitis is back with a vengeance. The eosinophil count in the lowest part of his esophagus is as high as 96. Previously, even at its worst, it was less than 25. He is allergic to one of the few foods he is eating.
His doctor is at a conference this week. We will talk with him next week to get a plan of action.
Thursday, October 25, 2007
Sunday, October 21, 2007
Our Latest Cincinnati Experience
Sometimes I get a chance to watch Extreme Home Makeover on television. Each week, this show reduces me to tears as Ty Pennington and colleagues tear down an unhealthy house and build a dream home in its place for a deserving family. It overwhelms me how gobs of people can come to the aid of one small family and treat them like royalty - with nothing in it for them.
Last Friday, I felt like I was the recipient of something similar. This was the day in which Children's Flight of Hope flew Simi, Asher, and me to Cincinnati so that we could go to Cincinnati Children's Hospital.
As you know from reading this blog, Cincinnati Children's is where Asher goes for treatment of his eosinophilic esophagitis. We have been going there for about a year, after 3 years of repeatedly receiving bad medical advice - advice which was hurting Asher - here locally. It's an expensive and exhausting trip and the medical treatment is expensive and difficult (which, I think, is well understated), but it's been worth it. Since January, since we began with the elemental formula and the food trials, Asher has been healthy for the first time in his life.
Thing is, the protocol calls for an endoscopy after every 3 food trials. The only real way we can know for certain that Asher's allergy is in remission is via endoscopy. And to get the endoscopy, we need to go to Cincinnati. That's a lot of money in flights, hotels and car rentals. It's a lot of time off work since it's a day to get up there, a day there, and a day to return home. It's a lot of stress because I have to carry all of Asher's foods (ya think this kid can find something to eat in a restuaurant? ha!) . I have to get 3 days of foods through airport security - and keep it cold enough to make the trip. Find a hotel with a kitchen. Make sure that the pots and pans have no left-over food residue. Ugh.
Needless to say, it's been 9 foods since we were last in Cincinnati. And if the biopsy shows over 20 eos per hpf, then all of those foods are suspect and we have to take them all out. That will be devastating!
Now I've found Children's Flight of Hope.
On Friday, two pilots flew me, Simi, and Asher to Cincinnati. The SOLE purpose of the trip was to bring the three of us to Cincinnati Children's for their medical care. These two pilots got up before 6 AM and arrived home after 9 PM - they spent their entire day - just to get the boys the medical care they needed. They asked nothing in return. The trip was absolutely amazing. Such an incredible act of selfless kindness like nothing I've ever experienced before. We were treated like royalty.
One added benefit is that the plane-ride made the journey fun for the boys. So the boys came home really enjoying their day in Cincinnati, if you can believe that!
With the help of Children's Flight of Hope, we can follow the protocol exactly. We can make the trips to Cincinnati that Asher needs.
Thank you, Children's Flight of Hope.
Hopefully we'll have the biopsy results tomorrow. I can't wait.
Last Friday, I felt like I was the recipient of something similar. This was the day in which Children's Flight of Hope flew Simi, Asher, and me to Cincinnati so that we could go to Cincinnati Children's Hospital.
As you know from reading this blog, Cincinnati Children's is where Asher goes for treatment of his eosinophilic esophagitis. We have been going there for about a year, after 3 years of repeatedly receiving bad medical advice - advice which was hurting Asher - here locally. It's an expensive and exhausting trip and the medical treatment is expensive and difficult (which, I think, is well understated), but it's been worth it. Since January, since we began with the elemental formula and the food trials, Asher has been healthy for the first time in his life.
Thing is, the protocol calls for an endoscopy after every 3 food trials. The only real way we can know for certain that Asher's allergy is in remission is via endoscopy. And to get the endoscopy, we need to go to Cincinnati. That's a lot of money in flights, hotels and car rentals. It's a lot of time off work since it's a day to get up there, a day there, and a day to return home. It's a lot of stress because I have to carry all of Asher's foods (ya think this kid can find something to eat in a restuaurant? ha!) . I have to get 3 days of foods through airport security - and keep it cold enough to make the trip. Find a hotel with a kitchen. Make sure that the pots and pans have no left-over food residue. Ugh.
Needless to say, it's been 9 foods since we were last in Cincinnati. And if the biopsy shows over 20 eos per hpf, then all of those foods are suspect and we have to take them all out. That will be devastating!
Now I've found Children's Flight of Hope.
On Friday, two pilots flew me, Simi, and Asher to Cincinnati. The SOLE purpose of the trip was to bring the three of us to Cincinnati Children's for their medical care. These two pilots got up before 6 AM and arrived home after 9 PM - they spent their entire day - just to get the boys the medical care they needed. They asked nothing in return. The trip was absolutely amazing. Such an incredible act of selfless kindness like nothing I've ever experienced before. We were treated like royalty.
One added benefit is that the plane-ride made the journey fun for the boys. So the boys came home really enjoying their day in Cincinnati, if you can believe that!
With the help of Children's Flight of Hope, we can follow the protocol exactly. We can make the trips to Cincinnati that Asher needs.
Thank you, Children's Flight of Hope.
Hopefully we'll have the biopsy results tomorrow. I can't wait.
Thursday, October 18, 2007
Edible Enemies - Correction
Oops! A correction to the day that the show Edible Enemies will be shown: It is October 19th at 10 AM on the Food Network.
Monday, October 15, 2007
Today Show Article
While we're on the subject of public stories about food allergies, the Today Show recently did a piece on a boy from the UK with eosinophilic enteropathy. It's a poorly researched piece with a lot of incorrect information (shame on you, Today Show!). But a few gems are worth mentioning:
This boy is undergoing the same protocol as Asher. Try a food, wait two weeks for a reaction, try a food, wait another two weeks for a reaction. Undergo an endoscopy after three foods.
In my opinion, the most important stuff came from the public writing into the message board. There is a lot of good stuff written there. If you want to learn a day in the life, it's good to read some of the comments on this message board. One post, in particular, deserves special mention. It's the post on this page, written by Frank S. of Pebble Beach, California.
Eosinophilic diseases are not rare, unfortunately. I wish they were, because then perhaps Asher wouldn't have it. In fact, more children suffer from eosinophilic diseases than cystic fibrosis. Not like I'd want any children to suffer from any of that. My point is that the Today Show was incorrect by calling it "extremely rare". Gosh, they make it sound like this little boy from the UK is the only person in the world suffering from this disease. A brief glance at the message board shows you otherwise.
This boy is undergoing the same protocol as Asher. Try a food, wait two weeks for a reaction, try a food, wait another two weeks for a reaction. Undergo an endoscopy after three foods.
In my opinion, the most important stuff came from the public writing into the message board. There is a lot of good stuff written there. If you want to learn a day in the life, it's good to read some of the comments on this message board. One post, in particular, deserves special mention. It's the post on this page, written by Frank S. of Pebble Beach, California.
Eosinophilic diseases are not rare, unfortunately. I wish they were, because then perhaps Asher wouldn't have it. In fact, more children suffer from eosinophilic diseases than cystic fibrosis. Not like I'd want any children to suffer from any of that. My point is that the Today Show was incorrect by calling it "extremely rare". Gosh, they make it sound like this little boy from the UK is the only person in the world suffering from this disease. A brief glance at the message board shows you otherwise.
Edible Enemies
For those who are interested, a TV show on food allergies will be on the Food Network on October 10th October 19. They say that it will be aired at 10 AM ET/PT. Best to TiVo it, just to make sure you don't miss it.
Now, I haven't yet seen it and the little description doesn't sound all that appealing, but the other Eos. moms who watched it on October 13th said it was useful to help people see a day in our lives. Mentioned something about how there is even a can of Neocate in the background of one of the scenes. Asher drinks the Neocate Jr. chocolate flavor, by the way. Welcome to our world, Food Network! Here is the short description, from the food network site:
"Edible Enemies is a one-hour special report that looks at the mysterious increase in both the number and the severity of food allergies in the United States. 12 million Americans now have food allergies. There is no cure. There is no treatment, other than a shot of epinephrine in an emergency. We will hear from the parents of small children, and from teenagers and adults living with life-threatening food allergies."
OK, so there it is. If you watch it and it's a dud, well then, oh well. We'll both be disappointed.
Interestingly enough, eosinophilic esophagitis was first "discovered" around 35 years ago. Then about 7-9 years ago, cases of it just started "exploding" all over the place. There is a certainty that it's not something that just went unreported. Like autism, there is a genetic factor, but then there is an environmental trigger that makes it appear. The question is, what is that environmental trigger that began 7-9 years ago?
Now, I haven't yet seen it and the little description doesn't sound all that appealing, but the other Eos. moms who watched it on October 13th said it was useful to help people see a day in our lives. Mentioned something about how there is even a can of Neocate in the background of one of the scenes. Asher drinks the Neocate Jr. chocolate flavor, by the way. Welcome to our world, Food Network! Here is the short description, from the food network site:
"Edible Enemies is a one-hour special report that looks at the mysterious increase in both the number and the severity of food allergies in the United States. 12 million Americans now have food allergies. There is no cure. There is no treatment, other than a shot of epinephrine in an emergency. We will hear from the parents of small children, and from teenagers and adults living with life-threatening food allergies."
OK, so there it is. If you watch it and it's a dud, well then, oh well. We'll both be disappointed.
Interestingly enough, eosinophilic esophagitis was first "discovered" around 35 years ago. Then about 7-9 years ago, cases of it just started "exploding" all over the place. There is a certainty that it's not something that just went unreported. Like autism, there is a genetic factor, but then there is an environmental trigger that makes it appear. The question is, what is that environmental trigger that began 7-9 years ago?
Sunday, October 14, 2007
No Longer a Baby
Leila is no longer a baby. Seemingly overnight, she turned into a child.
I know, it was bound to happen one day. I just wish I had a bit of warning. Perhaps a bit of transition time. Now she's running after her brothers and talking in full sentences (OK, perhaps 2 or 3 word sentences). She refuses to sit in her highchair and insists on sitting on a proper dining room chair just like her brothers.
Admittedly, we now say that we want to put her in a box and send her away somewhere. She's in the throes of the "terrible twos" where she DEMANDS what she wants WHEN she wants and if someone tries to stop her she SCREAMS. And there is no way to reason with her. ("Leila, it's time to put away the paints and come to the dinner table.")
Yes, we'll get through this phase too. And when that happens, I'll be sad too. Maybe.
I know, it was bound to happen one day. I just wish I had a bit of warning. Perhaps a bit of transition time. Now she's running after her brothers and talking in full sentences (OK, perhaps 2 or 3 word sentences). She refuses to sit in her highchair and insists on sitting on a proper dining room chair just like her brothers.
Admittedly, we now say that we want to put her in a box and send her away somewhere. She's in the throes of the "terrible twos" where she DEMANDS what she wants WHEN she wants and if someone tries to stop her she SCREAMS. And there is no way to reason with her. ("Leila, it's time to put away the paints and come to the dinner table.")
Yes, we'll get through this phase too. And when that happens, I'll be sad too. Maybe.
Tuesday, October 09, 2007
A Frog For Asher
Asher's favorite birthday present is a bug habitat. It is a plastic environment that you can put bugs and frogs in and keep them there.
One day, when I reached my office, there was a beautiful tree frog on the keypad of the door to my office. This frog was a particularly beautiful shade of green and had long sticky fingers. I thought to myself that I'd take him home for Asher if he was still there at the end of the day. Sure enough, 5 PM rolled around and the frog hadn't moved from the entry keypad. So I scooped him up, put him in the bug habitat that Asher left in the vehicle and brought him home to Asher.
Needless to say, Asher was thrilled. He was over-the-moon in happiness when he saw the tree frog. It is the first pet that was purely for Asher.
And then I learned just how labor intensive it is to keep a tree frog. They need to eat. They eat live crickets. So you have to go to the pet store on a regular basis and buy live crickets. Then you have to keep the crickets alive. And you have to keep habitats clean. That's a lot of work!
Most importantly, the frog I found was a wild one and belonged back where I found it. So, we took the tree frog on vacation to the beach with us and had a blast sucking up bugs with the bug vacuum (remember that thing we bought after Asher's last endoscopy?) and feeding them to the frog and watching him eat. Then, when we got home, I took Asher to the place I found the frog and we released him together.
I've promised Asher that we'd get him a tadpole and watch him grow into a frog. And he can keep that frog for as long as the frog lives. Hopefully we can feed him frog pellets like the grow-a-frog we inherited from Simi's pre-school class, Sofin. Sofin is MUCH easier to maintain.
One day, when I reached my office, there was a beautiful tree frog on the keypad of the door to my office. This frog was a particularly beautiful shade of green and had long sticky fingers. I thought to myself that I'd take him home for Asher if he was still there at the end of the day. Sure enough, 5 PM rolled around and the frog hadn't moved from the entry keypad. So I scooped him up, put him in the bug habitat that Asher left in the vehicle and brought him home to Asher.
Needless to say, Asher was thrilled. He was over-the-moon in happiness when he saw the tree frog. It is the first pet that was purely for Asher.
And then I learned just how labor intensive it is to keep a tree frog. They need to eat. They eat live crickets. So you have to go to the pet store on a regular basis and buy live crickets. Then you have to keep the crickets alive. And you have to keep habitats clean. That's a lot of work!
Most importantly, the frog I found was a wild one and belonged back where I found it. So, we took the tree frog on vacation to the beach with us and had a blast sucking up bugs with the bug vacuum (remember that thing we bought after Asher's last endoscopy?) and feeding them to the frog and watching him eat. Then, when we got home, I took Asher to the place I found the frog and we released him together.
I've promised Asher that we'd get him a tadpole and watch him grow into a frog. And he can keep that frog for as long as the frog lives. Hopefully we can feed him frog pellets like the grow-a-frog we inherited from Simi's pre-school class, Sofin. Sofin is MUCH easier to maintain.
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