Here is an well-written news story done about a six year-old boy in Connecticut who has the same disease as Asher.
Thank you, Timmy and family, for sharing your story with the world.
Friday, May 23, 2008
Back to Square 1 Again
Last night was Simi's gymnastics "Last Class Blast". All three children were really looking forward to it. Similar to Asher's day, Simi's class did a small display of skills, received their award, had an opportunity to eat food, then got an hour of open play in the gym.
This time, Simi chose to play with his kindergarten friends rather than hang with us. So, off he went.
Leila watched the other girls and started to imitate their moves. It was amazing how quickly she picked up the moves! She and Asher took turns on the tumble track and she did a GREAT job jumping on the track then jumping into the pit. She had an absolutely wonderful night.
The clumsy uncoordinated Asher returned. Unlike Tuesday, Asher couldn't balance on the beam by himself, couldn't maneuver through the pit, and couldn't pick up his knees while bouncing on the trampoline. Why the change?
I started wondering if perhaps I imagined that coordinated Asher showed himself on Tuesday. Was it a dream? I'm sure it happened. The question is, why was Asher so different from one day to the next? Why the change?
On a different yet possibly related note, we had to discontinue the DMG supplement (beginning yesterday). Asher had explosive watery stool for the past week. Yesterday, his asthma kicked in. Asher's asthma is an allergic reaction. Obviously, when it becomes a choice between breathing or continuing a supplement, the breathing always wins.
So now gymnastics is over for the summer. We all said our good-byes to our gym friends and made plans on day/time schedules so that we can see them again in the fall.
This time, Simi chose to play with his kindergarten friends rather than hang with us. So, off he went.
Leila watched the other girls and started to imitate their moves. It was amazing how quickly she picked up the moves! She and Asher took turns on the tumble track and she did a GREAT job jumping on the track then jumping into the pit. She had an absolutely wonderful night.
The clumsy uncoordinated Asher returned. Unlike Tuesday, Asher couldn't balance on the beam by himself, couldn't maneuver through the pit, and couldn't pick up his knees while bouncing on the trampoline. Why the change?
I started wondering if perhaps I imagined that coordinated Asher showed himself on Tuesday. Was it a dream? I'm sure it happened. The question is, why was Asher so different from one day to the next? Why the change?
On a different yet possibly related note, we had to discontinue the DMG supplement (beginning yesterday). Asher had explosive watery stool for the past week. Yesterday, his asthma kicked in. Asher's asthma is an allergic reaction. Obviously, when it becomes a choice between breathing or continuing a supplement, the breathing always wins.
So now gymnastics is over for the summer. We all said our good-byes to our gym friends and made plans on day/time schedules so that we can see them again in the fall.
Wednesday, May 21, 2008
Gymnastics Finale
Last night was "Last Class Blast" for Asher's gymnastics class. Simi's is yet to come. Each class performed a short skills show for the parents, then they were treated to a cook-out (except Asher), then they were given a full hour of open play on any of the supervised equipment.
Asher did GREAT in the skills show. He did a backwards somersault by himself - something he has never been able to do before. He also did a cartwheel by himself. During open gym, he walked on the balance beam - even walked quickly on the balance beam - by himself. He's never done that before. He jumped on the trampoline and brought his knees into his chest - 10 times in a row. And then he did it again and again. My jaw stayed on the floor in utter amazement.
Asher and Simi really enjoyed themselves during open gym. They sprinted about 50 feet before launching themselves into the foam pit. They climbed up 4 feet and took a running jump into the pit. While Simi's never been afraid, until yesterday Asher never just launched himself into the pit. He always jogged slowly up to it, stopped, then climbed in. Yesterday's display, on Asher's part, was completely out of character. And it completely surprised me coming from a kid who couldn't balance on his own two feet just days ago. What changed?
Simi was a sight of speed, strength, and grace last night. During his games of cat and mouse (the cat chases the mouse into the foam pit), he was never caught while he was the mouse and always caught the other child (even the much older ones) while he was the cat. I'd come to expect seeing this during his gymnastics class, but it surprised me to see him running faster than children much older than he. And when jumping into the pit, he flings himself MUCH farther than any of the children - even the ones much older than he. There were times when I had to climb into the pit to rescue Leila and I never realised the strength needed to climb out. Yet Simi makes it look effortless. I had visions of him exceling at long jump, pole vault, distance and sprints during high school track. Luckily for him, that's more than a decade away and I'll have likely forgotten that vision by then. I'm so incredibly grateful to Dr. Pigula and Children's Hospital Boston for fixing Simi's heart. I just can't believe how great he's doing.
Leila was a toddler full of frustration last night. She wanted to follow her brothers in their activities and let everyone know her disappointment when she was stopped. She would have run the 50 feet and flung herself into the foam pit if I let her. In fact, towards the end of the night after most of the children left, I did help her do that. She also would have independently flung herself into the foam pit from a four foot height. Kristin, Asher's teacher, helped her do that. The girl is fearless. If her brothers can do it, she insists on doing it too and won't take no for an answer. That's my girl.
Asher was so proud of the ribbon he earned in gymnastics yesterday (the one that EVERY child receives). He brought it into school today for show and tell.
All three children poured themselves into bed in sheer exhaustion last night. They woke up tired. And they can't wait until Simi's last class blast so that they can do it again.
Asher did GREAT in the skills show. He did a backwards somersault by himself - something he has never been able to do before. He also did a cartwheel by himself. During open gym, he walked on the balance beam - even walked quickly on the balance beam - by himself. He's never done that before. He jumped on the trampoline and brought his knees into his chest - 10 times in a row. And then he did it again and again. My jaw stayed on the floor in utter amazement.
Asher and Simi really enjoyed themselves during open gym. They sprinted about 50 feet before launching themselves into the foam pit. They climbed up 4 feet and took a running jump into the pit. While Simi's never been afraid, until yesterday Asher never just launched himself into the pit. He always jogged slowly up to it, stopped, then climbed in. Yesterday's display, on Asher's part, was completely out of character. And it completely surprised me coming from a kid who couldn't balance on his own two feet just days ago. What changed?
Simi was a sight of speed, strength, and grace last night. During his games of cat and mouse (the cat chases the mouse into the foam pit), he was never caught while he was the mouse and always caught the other child (even the much older ones) while he was the cat. I'd come to expect seeing this during his gymnastics class, but it surprised me to see him running faster than children much older than he. And when jumping into the pit, he flings himself MUCH farther than any of the children - even the ones much older than he. There were times when I had to climb into the pit to rescue Leila and I never realised the strength needed to climb out. Yet Simi makes it look effortless. I had visions of him exceling at long jump, pole vault, distance and sprints during high school track. Luckily for him, that's more than a decade away and I'll have likely forgotten that vision by then. I'm so incredibly grateful to Dr. Pigula and Children's Hospital Boston for fixing Simi's heart. I just can't believe how great he's doing.
Leila was a toddler full of frustration last night. She wanted to follow her brothers in their activities and let everyone know her disappointment when she was stopped. She would have run the 50 feet and flung herself into the foam pit if I let her. In fact, towards the end of the night after most of the children left, I did help her do that. She also would have independently flung herself into the foam pit from a four foot height. Kristin, Asher's teacher, helped her do that. The girl is fearless. If her brothers can do it, she insists on doing it too and won't take no for an answer. That's my girl.
Asher was so proud of the ribbon he earned in gymnastics yesterday (the one that EVERY child receives). He brought it into school today for show and tell.
All three children poured themselves into bed in sheer exhaustion last night. They woke up tired. And they can't wait until Simi's last class blast so that they can do it again.
Monday, May 19, 2008
A Visit to the DAN! Doctor
Last Monday, we took Asher to a DAN! doctor. A DAN! doctor is a doctor who specializes in biomedical treatments for autistic children. Asher does NOT have autism, but there are a lot of similarities between Asher's symptoms and symptoms of autistic children. For example, autistic children have a lot of allergies - food and environmental - very similar to Asher. DAN! doctors call it "Leaky Gut" and have methods to "heal the gut" which are very different from the methods doctors use who specialize in Eosinophilic Disorders. Autistic children also have poor balance and coordination. It seems to this untrained, uneducated mind that autistic children have a lot of the same symptoms as Asher, but that they have MORE. They also have the extreme neurological issues which Asher, thankfully, does not have.
Because there are A LOT more children with Autism than there are with EE, there is more research. Over the past few decades, families with autistic children, physicians with autistic children, and interested researchers have been coming together in conferences to confer about ways to heal children with autism and they've come up with some great protocols to test for different things and treat those issues. Children with autism are being helped now. But they're not being helped in the traditional pediatrician's office because pediatricians get their direction from the American Academy of Pediatrics (AAP) and the AAP needs decades of stringent research (except for, interestingly, vaccine protocol) before they provide recommendations for treatment. Our goal in bringing Asher to a DAN! doctor was to do the analysis and subsequent treatments in the hopes of helping him heal.
We had already started Asher on some of the biomedical treatments. We introduced probiotics into his diet and "yeast killer" to bring his intestinal track into balance. I personally believe we have seen some positive benefit from the yeast killer. We also introduced vitamin supplements (multi-vitamin, zinc, co-enzyme Q10, carnitine and creatine), which has made tremendous difference in Asher's health.
On Monday, the DAN! doctor mentioned that the learning disability identified in January by the Early Intervention Program is usually a "connection issue" and usually an indication of a lack of essential fatty acids in the diet. Upon examining Asher's diet, it's absolutely true that Asher has NO essential fatty acids (EFA) in his diet. Your body can't make EFAs on its own; they must come from the diet. Thing is, EFAs come from fish, soy, and other things we can't possibly give him. What a conundrum.
The DAN! doctor also says that lack of balance and coordination are generally a sign of excess heavy metals in the body and suggests supplements to help the body expel the heavy metals naturally. This past Thursday, we introduced one of those supplements into Asher's diet. We chose the oral supplement DMG with Folinic Acid and B12.
Interestingly, shortly after Asher's futbol game on Saturday, he suffered an incredibly watery bout of diarrhea. Please pardon me if that's too much information. Us parents, especially us parents who have children with gastro-intestinal issues, are unusually preoccupied with our children's stools.
The questions are:
Because there are A LOT more children with Autism than there are with EE, there is more research. Over the past few decades, families with autistic children, physicians with autistic children, and interested researchers have been coming together in conferences to confer about ways to heal children with autism and they've come up with some great protocols to test for different things and treat those issues. Children with autism are being helped now. But they're not being helped in the traditional pediatrician's office because pediatricians get their direction from the American Academy of Pediatrics (AAP) and the AAP needs decades of stringent research (except for, interestingly, vaccine protocol) before they provide recommendations for treatment. Our goal in bringing Asher to a DAN! doctor was to do the analysis and subsequent treatments in the hopes of helping him heal.
We had already started Asher on some of the biomedical treatments. We introduced probiotics into his diet and "yeast killer" to bring his intestinal track into balance. I personally believe we have seen some positive benefit from the yeast killer. We also introduced vitamin supplements (multi-vitamin, zinc, co-enzyme Q10, carnitine and creatine), which has made tremendous difference in Asher's health.
On Monday, the DAN! doctor mentioned that the learning disability identified in January by the Early Intervention Program is usually a "connection issue" and usually an indication of a lack of essential fatty acids in the diet. Upon examining Asher's diet, it's absolutely true that Asher has NO essential fatty acids (EFA) in his diet. Your body can't make EFAs on its own; they must come from the diet. Thing is, EFAs come from fish, soy, and other things we can't possibly give him. What a conundrum.
The DAN! doctor also says that lack of balance and coordination are generally a sign of excess heavy metals in the body and suggests supplements to help the body expel the heavy metals naturally. This past Thursday, we introduced one of those supplements into Asher's diet. We chose the oral supplement DMG with Folinic Acid and B12.
Interestingly, shortly after Asher's futbol game on Saturday, he suffered an incredibly watery bout of diarrhea. Please pardon me if that's too much information. Us parents, especially us parents who have children with gastro-intestinal issues, are unusually preoccupied with our children's stools.
The questions are:
- Does the watery stool have any connection with the lack of balance/coordination?
- Does it have any connection with the DMG supplement?
- Has the new supplement caused Asher to be super-clumsy?
- If so, does that mean that it's helping or hurting?
- How long do we give him the supplement?
- Is it heavy metals or is it something else?
- Are we looking in the wrong direction?
- Can the supplementation help?
- Is this the right supplementation?
- Is there something else we should be doing for Asher?
So, if you have the answers to these questions, please let me know. If not, join the club and stay tuned while we figure it out.
Sunday, May 18, 2008
Soccer Finale
The Spring Soccer Season has come to an end. Yesterday, Simi and Asher played in their final game. They each received a really cool medal, which has a flame coming from a soccer ball. Too cool.
Simi did absolutely fantastic in his game yesterday. It was sheer beauty watching him navigate his way up and down the field with the ball, passing the ball to his teammates, and scoring goals. I know I'm biased, but it certainly seems like he has a lot of talent on the soccer field.
Asher was the complete opposite. In Thursday's soccer practice, he did FANTASTIC - better than he has all season. He raced up and down the field and kicked the ball and even passed to his teammates. Yesterday was different. Before the game even began yesterday, he said to me that he wanted to play goalie. Asher couldn't play goalie because the four year-old division doesn't play with goalies - they have four or five children on the field - with small fields - and they don't keep score. Truthfully, at that age, if a child kicks the ball into ANY goal, all the parents cheer. It doesn't have to be the right goal. I told Asher to play like he played on Thursday and marched him off onto the field.
Asher tried to play hard. He played as hard as he could. Something got in his way. He was completely unbalanced and uncoordinated in a way I hadn't seen him in several months. He could barely run in a straight line and any light tap from a teammate sent him sprawling onto the ground. In fact, the playing field became downright dangerous for him because other children fell on top of him or kicked his head accidentally when he fell down. He has a great big lump on one side of his head from one of these occasions. Asher knew before he started that he was feeling uncoordinated.
He wasn't just off-balance at soccer. While playing catch with him in the afternoon, his throws were super-wild and he couldn't catch the ball - the same ball he caught with ease just last week. He also couldn't hit the wiffle ball while playing baseball in the backyard yesterday afternoon - something he could also do with relative ease over the past few months. Not to mention, it's just not "normal" for a four year-old who exercises as hard as Asher does five times a week to be as uncoordinated as a two year-old. Something got in his way yesterday.
My question is, what caused him to be so incredibly amazingly off balance yesterday?
I have asked this question to both his pediatrician and the Occupational Therapist and Physical Therapist at different times over the past six months and they said, "he lacks the muscle tone". But that doesn't add up. He had plenty of muscle tone when he walloped the ball at age 2 on Simi's t-ball team. He had plenty of coordination just last week - and the week before - while playing soccer and playing catch. What happened yesterday?
I'm going to continue this post tomorrow, since it's already very long. To be continued...
Simi did absolutely fantastic in his game yesterday. It was sheer beauty watching him navigate his way up and down the field with the ball, passing the ball to his teammates, and scoring goals. I know I'm biased, but it certainly seems like he has a lot of talent on the soccer field.
Asher was the complete opposite. In Thursday's soccer practice, he did FANTASTIC - better than he has all season. He raced up and down the field and kicked the ball and even passed to his teammates. Yesterday was different. Before the game even began yesterday, he said to me that he wanted to play goalie. Asher couldn't play goalie because the four year-old division doesn't play with goalies - they have four or five children on the field - with small fields - and they don't keep score. Truthfully, at that age, if a child kicks the ball into ANY goal, all the parents cheer. It doesn't have to be the right goal. I told Asher to play like he played on Thursday and marched him off onto the field.
Asher tried to play hard. He played as hard as he could. Something got in his way. He was completely unbalanced and uncoordinated in a way I hadn't seen him in several months. He could barely run in a straight line and any light tap from a teammate sent him sprawling onto the ground. In fact, the playing field became downright dangerous for him because other children fell on top of him or kicked his head accidentally when he fell down. He has a great big lump on one side of his head from one of these occasions. Asher knew before he started that he was feeling uncoordinated.
He wasn't just off-balance at soccer. While playing catch with him in the afternoon, his throws were super-wild and he couldn't catch the ball - the same ball he caught with ease just last week. He also couldn't hit the wiffle ball while playing baseball in the backyard yesterday afternoon - something he could also do with relative ease over the past few months. Not to mention, it's just not "normal" for a four year-old who exercises as hard as Asher does five times a week to be as uncoordinated as a two year-old. Something got in his way yesterday.
My question is, what caused him to be so incredibly amazingly off balance yesterday?
I have asked this question to both his pediatrician and the Occupational Therapist and Physical Therapist at different times over the past six months and they said, "he lacks the muscle tone". But that doesn't add up. He had plenty of muscle tone when he walloped the ball at age 2 on Simi's t-ball team. He had plenty of coordination just last week - and the week before - while playing soccer and playing catch. What happened yesterday?
I'm going to continue this post tomorrow, since it's already very long. To be continued...
Friday, May 16, 2008
La Leilita and Her Food
It's no secret that Leila loves her food. After her tonsilectomy, she gained six pounds in a mere two months. I honestly have never seen a child eat as much as she did in the two-three months after her tonsilectomy.
Before her tonsilectomy, I felt like those huge marbles were getting in the way of her eating; that concern was confirmed by her post-surgery gorging. Leila hadn't gained a pound, between ages 1 and 2, but she gained six pounds in the two months post tonsilectomy. WOW!!!
Leila also loves to cook in her pretend kitchen. She cooks up all sorts of things and delivers it to each one of us. She "cooks" eggies and pasta for Simi because that's his favorite dish. She "cooks" pork for Asher. She "cooks" all sorts of things for me. And she always brings me "tea" with my meal. She's very busy in her kitchen.
Now that Leila has recovered from her tonsilectomy, we've stopped giving her Flovent and have been preparing to submit her for an endoscopy with the thought that she might have the same disease as Asher. Now, that thought isn't so certain. She's been doing great ever since her tonsils have been removed.
Now we've been adding in all sorts of allergenic "Asher poisons", like wheat, eggs, and fish, into Leila's diet. Leila isn't certain what to make of the new foods - she just looks at it like, "what is this?".
While Leila is a bit perplexed on her new change of diet, Asher is - most definitely - very unhappy about it. I think he felt like, with Leila sharing his diet, he wasn't singled out. Now, he very much is singled out. It is difficult to upset my easy-going Asher, but this change in Leila's diet certainly has him upset. We add insult to injury by making Asher drink some nasty-tasting vitamin supplements twice a day. This kid just can't get a break.
Leila, when she gets mad, makes a "mean" face. Good golly, this girl gets MAD! Naturally, we all laugh at her when she gets all huffy. We point to her face -- all scrunched up -- and say, "Leila has her angry eyes on."
The other day, Leila and Asher were quibbling and Leila said to Asher, "Asher, I have my angry eyes on." All of us just fell over with laughter.
That's my girl.
Before her tonsilectomy, I felt like those huge marbles were getting in the way of her eating; that concern was confirmed by her post-surgery gorging. Leila hadn't gained a pound, between ages 1 and 2, but she gained six pounds in the two months post tonsilectomy. WOW!!!
Leila also loves to cook in her pretend kitchen. She cooks up all sorts of things and delivers it to each one of us. She "cooks" eggies and pasta for Simi because that's his favorite dish. She "cooks" pork for Asher. She "cooks" all sorts of things for me. And she always brings me "tea" with my meal. She's very busy in her kitchen.
Now that Leila has recovered from her tonsilectomy, we've stopped giving her Flovent and have been preparing to submit her for an endoscopy with the thought that she might have the same disease as Asher. Now, that thought isn't so certain. She's been doing great ever since her tonsils have been removed.
Now we've been adding in all sorts of allergenic "Asher poisons", like wheat, eggs, and fish, into Leila's diet. Leila isn't certain what to make of the new foods - she just looks at it like, "what is this?".
While Leila is a bit perplexed on her new change of diet, Asher is - most definitely - very unhappy about it. I think he felt like, with Leila sharing his diet, he wasn't singled out. Now, he very much is singled out. It is difficult to upset my easy-going Asher, but this change in Leila's diet certainly has him upset. We add insult to injury by making Asher drink some nasty-tasting vitamin supplements twice a day. This kid just can't get a break.
Leila, when she gets mad, makes a "mean" face. Good golly, this girl gets MAD! Naturally, we all laugh at her when she gets all huffy. We point to her face -- all scrunched up -- and say, "Leila has her angry eyes on."
The other day, Leila and Asher were quibbling and Leila said to Asher, "Asher, I have my angry eyes on." All of us just fell over with laughter.
That's my girl.
Thursday, May 15, 2008
Cauliflower
Asher has begun a new food trial: cauliflower. We chose it because it's one of his formerly favorite foods and was one of the foods in the previous failed food trial. In that food trial, I felt that cauliflower was truly a safe food but caught up in a trial with a "bad" food.
I personally believe that Asher's just thrilled to be eating something new. He's loving the cauliflower.
Regarding the banana food trial, we're considering it - as least preliminarily - successful and keeping it in Asher's diet. Since he's been eating bananas, he has a VERY difficult time getting out of bed in the mornings. But once he's up, he has great energy and spirit. We'll find out in July - during the next scope - if the morning tiredness is indicative of a food trial failure.
I personally believe that Asher's just thrilled to be eating something new. He's loving the cauliflower.
Regarding the banana food trial, we're considering it - as least preliminarily - successful and keeping it in Asher's diet. Since he's been eating bananas, he has a VERY difficult time getting out of bed in the mornings. But once he's up, he has great energy and spirit. We'll find out in July - during the next scope - if the morning tiredness is indicative of a food trial failure.
Friday, May 09, 2008
Ode to Murray
The World lost a great man yesterday. Murray Benson passed peacefully last night.
I found this poem and would like to share it. But before I share the poem, please go to this YouTube video. I think Murray would have liked it.
Doris, Karen, and Craig, our thoughts and prayers are with you.
ODE TO A LOVING FATHER
He wasn’t famous, he wasn’t rich
He just looked after his wife and kids
He made sure there was always food
And clothing that made us look good
He brought us up though strict but right
So we wouldn’t stray into the night
He made sure we learned our game
And be proud of our family name
The world won’t know that he is gone
But lot’s of people (I am one)
Know that the world has lost a man
Who was good and kind and better than
A kid could wish for in a dad
So losing him makes me real sad
I’d like to tribute this to him
I’m sure so would his next of kin
I love you dad, before and now
You rest in peace and this I vow
You’ll always be a part of me
I’ll remember you as it should be
A kind and loving father who
Loved his family through and through
And with this I’d like to end
Goodbye my father, chum and friend.
I found this poem and would like to share it. But before I share the poem, please go to this YouTube video. I think Murray would have liked it.
Doris, Karen, and Craig, our thoughts and prayers are with you.
ODE TO A LOVING FATHER
He wasn’t famous, he wasn’t rich
He just looked after his wife and kids
He made sure there was always food
And clothing that made us look good
He brought us up though strict but right
So we wouldn’t stray into the night
He made sure we learned our game
And be proud of our family name
The world won’t know that he is gone
But lot’s of people (I am one)
Know that the world has lost a man
Who was good and kind and better than
A kid could wish for in a dad
So losing him makes me real sad
I’d like to tribute this to him
I’m sure so would his next of kin
I love you dad, before and now
You rest in peace and this I vow
You’ll always be a part of me
I’ll remember you as it should be
A kind and loving father who
Loved his family through and through
And with this I’d like to end
Goodbye my father, chum and friend.
Thursday, May 08, 2008
Bananas
Asher started a new food trial last week. He is currently trialing bananas. While he's happy to be eating a new food, he's not that thrilled with bananas. He's tried bananas before with last year's failed food trial. We didn't see any overt reaction then, so my thought was that it is a safe food to try. Plus, bananas is filled with wonderful potassium and other nutrients. If he passes a trial of bananas, he will have one food from every food group. Not too shabby.
He can begin a new food trial next Tuesday. Right now he chooses cauliflower. Of course he's welcome to change his mind before we begin.
We've been giving him vitamins too. Multi-vitamin, co-enzyme Q10, zinc, and carnitine. Oh, and probiotic and yeast-killer to heal the gut. I have noticed a BIG difference in his energy level since he's been taking the vitamins. It makes me wonder if he's not getting complete nutrition in his nutritionally complete elemental formula.
In other news, Simi's doing great in soccer and gymnastics. He's quite the athlete. And he beats me handily in Wii games. Harumpf!
Leila doesn't play the Wii, but she loves Go Diego Go. She picks things up very quickly. She uses the Spanish words in regular conversation and she uses them in context. For example, she'll need help with something and she'll say, Mommy, ayudame! Way to go Leily! She's also doing great with her letters. She loves doing her letters.
He can begin a new food trial next Tuesday. Right now he chooses cauliflower. Of course he's welcome to change his mind before we begin.
We've been giving him vitamins too. Multi-vitamin, co-enzyme Q10, zinc, and carnitine. Oh, and probiotic and yeast-killer to heal the gut. I have noticed a BIG difference in his energy level since he's been taking the vitamins. It makes me wonder if he's not getting complete nutrition in his nutritionally complete elemental formula.
In other news, Simi's doing great in soccer and gymnastics. He's quite the athlete. And he beats me handily in Wii games. Harumpf!
Leila doesn't play the Wii, but she loves Go Diego Go. She picks things up very quickly. She uses the Spanish words in regular conversation and she uses them in context. For example, she'll need help with something and she'll say, Mommy, ayudame! Way to go Leily! She's also doing great with her letters. She loves doing her letters.
Tuesday, May 06, 2008
ABCs
While Simi was in his 1 to 2 year-old classroom at day care, his teacher suggested to me that he was ready to learn his ABCs. I bought the foam letters and during bath time, I began to teach Simi his ABCs. We started with three letters and we made a game out of it. Simi quickly learned his ABCs.
Asher learned his ABCs, too. Since I bathed both boys together, Simi always answered the questions for Asher and Asher didn't get to learn his ABCs in the same way as Simi did. Asher learned them in the way Asher prefers to learn - by watching a video.
Leila, being the third child, doesn't get a chance to learn her ABCs. We're way to busy to teach them to her. She's already two years old and we have just barely begun to think about teaching her the letters. We just started sitting her on the potty (another thing we're late on. Asher was potty trained before age 2 and Simi was well on his way). To keep her interest, I've been teaching her the letters.
Perhaps it's her age; Leila is catching on tremendously quickly with her letters. She's going to learn them all in no time.
Asher learned his ABCs, too. Since I bathed both boys together, Simi always answered the questions for Asher and Asher didn't get to learn his ABCs in the same way as Simi did. Asher learned them in the way Asher prefers to learn - by watching a video.
Leila, being the third child, doesn't get a chance to learn her ABCs. We're way to busy to teach them to her. She's already two years old and we have just barely begun to think about teaching her the letters. We just started sitting her on the potty (another thing we're late on. Asher was potty trained before age 2 and Simi was well on his way). To keep her interest, I've been teaching her the letters.
Perhaps it's her age; Leila is catching on tremendously quickly with her letters. She's going to learn them all in no time.
Sunday, May 04, 2008
A New Addition...
While growing up, I constantly heard how bad it was to spend time playing video games. "They suck the life blood out of you", was what I heard. "They turn you into a couch potato", was another common statement. "They take time away from your studies", was another common message. Those messages made sense to me and I avoided the video game culture that others enjoyed. It also kept me from buying video games for my children.
Asher, in particular, LOVES video games. Whenever we go to the movies or Chuck E. Cheese or anywhere where there is a video game, he runs to it and he'll play for as long as we let him. Asher especially loves the "shoot 'em up" games, which I find particularly disdainful. Asher's love for video games and his physical developmental issues have strengthened my resolve to keep video games out of the house.
Raj and I have been researching elementary school programs for Asher. We identified three excellent possibilities and we have taken Asher to each of the three, to see which is the best fit for Asher -- and the family.
During these elementary school visits, we brought Asher's early intervention evaluation and results which identify his areas of strengths and weaknesses. In one of them, we asked the principal, someone who I respect greatly, to give us ideas on how to help Asher develop his areas of weakness. Imagine my surprise when he suggested getting Asher some video games, the Leapster and the Wii in particular. He even pointed out the "shoot 'em up" games are GREAT for strengthening some of Asher's areas of weakness. My jaw hit the floor.
In hearing what the principal said, my sweet brother, Uncle Peter, sent Simi, Asher, and Leila a present: A Wii system with the sports bundle. The kids now play tennis, bowling, boxing, golf, and some other games. The boxing, in particular, is GREAT exercise. Asher spent 30 minutes yesterday boxing a digital opponent and worked up a sweat. Asher NEVER exercises hard enough to work up a sweat! My jaw, once again, hit the floor.
Another positive is that the boys are playing the Wii instead of watching mindless cartoons. I like that.
Thank you, Uncle Peter and Aunt Karen, for bringing my children to "the dark side" and introducing them to the world of video games. Their muscles and hand-eye coordination thank you, too. Perhaps, with the help of these games, we can help Asher rise out of the 9th percentile in gross motor skills.
Asher, in particular, LOVES video games. Whenever we go to the movies or Chuck E. Cheese or anywhere where there is a video game, he runs to it and he'll play for as long as we let him. Asher especially loves the "shoot 'em up" games, which I find particularly disdainful. Asher's love for video games and his physical developmental issues have strengthened my resolve to keep video games out of the house.
Raj and I have been researching elementary school programs for Asher. We identified three excellent possibilities and we have taken Asher to each of the three, to see which is the best fit for Asher -- and the family.
During these elementary school visits, we brought Asher's early intervention evaluation and results which identify his areas of strengths and weaknesses. In one of them, we asked the principal, someone who I respect greatly, to give us ideas on how to help Asher develop his areas of weakness. Imagine my surprise when he suggested getting Asher some video games, the Leapster and the Wii in particular. He even pointed out the "shoot 'em up" games are GREAT for strengthening some of Asher's areas of weakness. My jaw hit the floor.
In hearing what the principal said, my sweet brother, Uncle Peter, sent Simi, Asher, and Leila a present: A Wii system with the sports bundle. The kids now play tennis, bowling, boxing, golf, and some other games. The boxing, in particular, is GREAT exercise. Asher spent 30 minutes yesterday boxing a digital opponent and worked up a sweat. Asher NEVER exercises hard enough to work up a sweat! My jaw, once again, hit the floor.
Another positive is that the boys are playing the Wii instead of watching mindless cartoons. I like that.
Thank you, Uncle Peter and Aunt Karen, for bringing my children to "the dark side" and introducing them to the world of video games. Their muscles and hand-eye coordination thank you, too. Perhaps, with the help of these games, we can help Asher rise out of the 9th percentile in gross motor skills.
Sunday, April 27, 2008
TV Time
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...
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...
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.
Sunday, March 30, 2008
Two Sides of a Coin
Simi and Asher had their first soccer games this past Saturday. They were both so incredibly excited about it. They had talked about it for days! Saturday finally arrives. When the day begins, it's roughly 60-70 degrees outside and sunny. Simi's game begins at 9 AM. I tell him to dress in shorts and a t-shirt and off he goes with Raj to the field.
As the rest of us are getting ready for Asher's 10:15 AM game, Raj telephones. It's freezing outside. Cold and very windy. Better dress more warmly.
OK, so off we go. We get in the car and drive to the fields. As we start out, drizzle begins to fall. Not a good beginning. As we get closer to the fields, the rain gets harder. By the time we get to the fields, it's a good soaking downpour. I look at the temperature gauge on the car (which is surprisingly reliable); it reads 40 degrees. Cold. Rain. Simi's playing in this weather. Asher, who is newly recovering from his latest asthma/allergy attack, is scheduled to play. Right.
As I tell Asher that he can't play in this weather, he begins to cry. He's so disappointed. He wants to play soccer so badly. I know how badly he wants to play. I'm dissappointed for him. I feel so terrible that for a moment I almost let him out of the car to go play.
The other part of me is thrilled. It's raining. That means the pollen - the thing that's causing Asher to be unable to breathe - is being washed away. It means relief from the asthma attacks. It means more energy for the Asher-boy. So what if he can't play soccer; he'll be able to breathe. We'll find some fun thing to do indoors.
Two sides of a coin. You just can't lose. Or win.
Simi, by the way, did great in his game. He absolutely loved it.
As the rest of us are getting ready for Asher's 10:15 AM game, Raj telephones. It's freezing outside. Cold and very windy. Better dress more warmly.
OK, so off we go. We get in the car and drive to the fields. As we start out, drizzle begins to fall. Not a good beginning. As we get closer to the fields, the rain gets harder. By the time we get to the fields, it's a good soaking downpour. I look at the temperature gauge on the car (which is surprisingly reliable); it reads 40 degrees. Cold. Rain. Simi's playing in this weather. Asher, who is newly recovering from his latest asthma/allergy attack, is scheduled to play. Right.
As I tell Asher that he can't play in this weather, he begins to cry. He's so disappointed. He wants to play soccer so badly. I know how badly he wants to play. I'm dissappointed for him. I feel so terrible that for a moment I almost let him out of the car to go play.
The other part of me is thrilled. It's raining. That means the pollen - the thing that's causing Asher to be unable to breathe - is being washed away. It means relief from the asthma attacks. It means more energy for the Asher-boy. So what if he can't play soccer; he'll be able to breathe. We'll find some fun thing to do indoors.
Two sides of a coin. You just can't lose. Or win.
Simi, by the way, did great in his game. He absolutely loved it.
Friday, March 28, 2008
Ode to Spring
Springtime is my absolutely favorite season. I really dislike the cold weather and the short, dark days. Truthfully, any temperature below 70 degrees is too cold for me, so winter really takes a toll on me.
One of the reasons I love spring is because it means that winter is over. Winter really and truly is painful to me. And I love to watch the birds return, build their nests and lay their eggs. I love to watch the flowers popping and the trees getting their leaves. It's a time of rebirth and it's absolutely lovely.
But I don't love it anymore. Because now, to me, it's the season that kicks Asher's asthmatic butt. He gets these dark circles under his eyes, super-congested in his nose, and starts to wheeze. The pollen causes him to struggle in his breathing. So now, the things I used to like about springtime are on the opposite list. And now, instead of reveling in spring, I count the days until the pollen is gone. And I dread the arrival of Autumn, my formerly second favorite season, when we have to go through a similar allergy season.
Maybe winter isn't so bad after all.
One of the reasons I love spring is because it means that winter is over. Winter really and truly is painful to me. And I love to watch the birds return, build their nests and lay their eggs. I love to watch the flowers popping and the trees getting their leaves. It's a time of rebirth and it's absolutely lovely.
But I don't love it anymore. Because now, to me, it's the season that kicks Asher's asthmatic butt. He gets these dark circles under his eyes, super-congested in his nose, and starts to wheeze. The pollen causes him to struggle in his breathing. So now, the things I used to like about springtime are on the opposite list. And now, instead of reveling in spring, I count the days until the pollen is gone. And I dread the arrival of Autumn, my formerly second favorite season, when we have to go through a similar allergy season.
Maybe winter isn't so bad after all.
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