Friday, May 23, 2008

Excellent Story About a Boy With EE

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.

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.

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.

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:
  • 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...

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.

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.

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.

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.

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.

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.