Speaking of Crashes

We identified the cause of Asher's most recent allergic reaction. He suffered an allergic reaction from the Bactrim that we're giving him to kill the MRSA infection. I figured it out on Monday after a rash popped out all over his body. A google search confirmed that others have had the exact same side effects as Asher. Why aren't these side effects listed on the literature given with the medication????

It's encouraging that he managed to go for 9-12 days before suffering a reaction. And hopefully that was enough time to rid his body of the MRSA. We intend to do a follow-up test to check and will use a different antibiotic if necessary.

Asher is still recuperating. This reaction wiped him out completely.

In other news:

• On our way to the pediatrician's office yesterday to have him checked out, Asher and I got into a car accident. So we then got to go to urgent care for both the allergic reaction and the car accident. We were driving the Subaru. I'm hoping that it gets totalled; I've always hated that car.
• Our sweet 14 year-old Spotted Dog is really struggling health wise. He was still behaving like a puppy just a few months ago; now he's acting his age. The thought of losing him is devastating.
• I got a new job!

CRASH!

Asher's good energy wave has come to an end. In fact, Asher is now sicker than he has been in a long time. He's completely crashed.

Asher was riding such a good wave for such a long time that we got used to it. In a way, I think we started taking it for granted that he was feeling so good. It started feeling normal to us. This low he is in right now is the polar opposite of the high he's been riding. I haven't seen him this sick since we trialed beef.

Asher has spent most of the week-end on the couch. He's complaining of a head-ache, tummy ache, full body ache, and whatever else he can complain about. It hurts to eat. He has no energy and spends every possible moment sleeping. Thank G-d for elemental formula, which lets him drink his nutrition. The elemental formula will get him through this bad spell.

Now we have to figure out the cause. That's the fun part. Let's figure out what seemingly innocuous thing is destroying my kid. Of course we have to figure it out quickly, to help get Asher out of the state he's in. Ugh.

Fools

When I was in the Peace Corps, I drove a motorcycle. I remember the months before I got that motorcycle. I had to walk miles - each way - from my house to my job. And it was hot. Many times I got a ride because lots of guys wanted to have "the american" on the back of their bikes. Then it was a hassle getting rid of the ride. And when I had to go to town to buy food or get my mail, it was a day-long trip in a crammed "gua-gua". So, I was thrilled when I learned that Peace Corps was going to provide me with a motorcycle.

I chose a Honda 100. They had Honda 125s, but they were so tall (or my legs were so short) that my feet couldn't reach the ground. I loved that Honda 100. It was similar to a motocross bike and went everywhere. I took that bike on goat paths, across rivers, up mountains - you name it. Without a doubt, it changed my Peace Corps experience.

Now, in the Dominican Republic, where I lived, it was HOT. I'm not joking. I lived in the desert part of the DR and it routinely got to about 100 degrees Fahrenheit. Although in the winter it got "so cold" that you had to wear long sleeves while riding the motorcycle at night. Brrr. Anyway, it was so hot that I'd want to wear lightweight clothing - and as little of it as I could possibly get away with.

Thing is, I'm riding a motorcycle. And since one just never knows when an accident is going to happen, the best thing to do is "be prepared". So...I wore jeans while riding that bike. Thick jeans. Yes, it was hot. Those jeans saved my legs from tons of stuff that could have happened. Like, when I fell off my bike while climbing a goat path. Or when someone ran into me at an intersection. I'm glad I wore those jeans.

Although I LOVED that motorcycle, I'd NEVER ride one in the US. People drive faster here. I think it has to do with the fact that we have paved roads and highways. Thing is, if you fall off your bike while driving these big speeds, you can get REALLY hurt. And the big cars in the US don't see motorcycles, so they cut you off. Even now that the price of gas is prohibitively expensive, I would never even consider getting a motorcycle. Folks who ride motorcycles say that it's not a matter of IF, but rather WHEN, that accident is going to happen. That money that you save on gas doesn't do you ANY good if you get killed or seriously injured in a motorcycle accident. It's just not worth the risk.

But imagine my surprise when, the other day, I saw a young lady riding a motorcycle dressed in a light summer dress. She was on the city streets near Duke - where traffic cuts in and out and all over the place. The wind blew up her dress and showed her panties to the entire world. Aside from the obvious, I couldn't help but think that she's risking an awful lot of road rash when the inevitable fall happens. I'm sure that lots of drivers took their eyes off the road when she passed by - further increasing the risk of a crash. She did nothing to change my impression of Duke students - but that's a different blog entry for a different day.

So, folks, if you're going to ride that motorcycle, be sure to protect your skin and body as much as you can. Keep in mind that it's very difficult for folks in cars to see you - so you have to be prepared. And don't forget the helmet. Or better yet, get an economical vehicle with a good mpg rating. Some things are just not worth the risk.

Pre-School Graduation

Today was Asher's last day of pre-school. He starts kindergarten soon.

At Asher's pre-school, they have a small graduation ceremony just before lunch. They craft a graduation cap out of cardboard and tape and make a tassel from thin rope. They create a diploma and the head of the pre-school and the teachers sign it. Then, during circle time, Asher was called up and each child said a few words to him. He received his diploma. Then everyone gave him a great big hug. Then he got to have his last lunch in the big cafeteria. Now, next time he returns, it'll be as a visitor.

We didn't prepare Asher as well as we should have for the transition. I mean, he knew that he was leaving and going to kindergarten. But we didn't tell him until yesterday that he would be graduating today. And we didn't put it together for him that today would be his last day - never to return. Truthfully, I didn't put it together in my head either. It took me by surprise too. I didn't prepare any thank you for his teachers. And now I feel absolutely crappy about that. I know I can go back and do something - and I will. But it's not the same.

But back to Asher: We told Asher this morning that today was his last day. He got very sad and said that he wanted to graduate -- and then go back. He wants to stay in preschool. He has so much fun there. He has all his friends there. He wants to stay.

I'd like him to stay too. He's not ready for kindergarten. But those are the rules.

Back to Asher again: He had a wonderful graduation ceremony. He had a wonderful lunch. Then, when Simi came home from school, the two of them got to play at Chuck E. Cheese to celebrate.

And now, ready or not, Asher's on his way to kindergarten.

Gabby

Here is a news story about a little girl named Gabby who has the same disease as Asher.

That Gabby-girl is a little cutie!

Introducing Petita

Two year-old Leila is a great big personality in a teeny tiny little pint-size body. She's under the 25th percentile in height for her age group and 95 percentile in weight. But what she lacks in size, she more than makes up for in attitude. In reaction to something, she crinkles up her little nose and says, "I don't like it", with such gusto and spirit that you truly believe her and back away.

As you know, we used to call her "Leili", which is short for "Leilita". In pure Leila form, she replied, "I NOT Leili, I'm Leila!!!". OK, then.

So imagine our surprise when, the other day, Leila announces that her name is "Petita".

"I NOT Leila", Leila says, with her nose all crinkled up. "I Petita." OK, Petita, eat your breakfast, please.

Petita toddles off after her brothers, following them in whatever they do. Jumping into the trampoline pit - no problem for Petita. Running after and kicking a soccer ball - sounds good. Making your hand in the shape of a gun and chasing your brothers around the house while making shooting sounds at them - that too.

Then there's the sweet side of Petita, where she hugs her baby doll as she drags her across the room. Or when she goes into her pretend kitchen and fixes you a meal and toddles sweetly over to you and hands you the plate full of pretend "eggies and pasta" or an empty cup of tea.

I can't wait to see what name she chooses next.

How to Gain/Keep Customers

Sometimes I wonder how certain companies can stay in business.

Take DHL for example. When we were submitting Asher's bodily fluids for testing, we had to mail one of the samples to a laboratory in Paris, France. The instructions on the form said to contact DHL for shipping. So I did. Someone from DHL came to the house to pick up the sample. He gave me a form to complete. After I completed the form, I handed him the package. I also expressed concern that they requested that my credit card information - to pay for the package - be taped outside the package for everyone to view. I didn't see that as a safe practice. Off went the package.

Days later, I learned that DHL lost the package.

While waiting on hold with DHL for the fifth time, I listened to the muzak and hold messages. It said that they have a money back guarantee. If not fully satisfied with their service, they would refund customer money. After the customer service representative admitted that the package was officially lost, I asked them to refund my money. "Not possible", says the customer service representative. "Huh? Your message says that you have a money back guarantee. Plus, you lost my package. You didn't deliver your end of the deal. I shouldn't have to pay," was my reply. "I'm sorry, that's our policy.", says the customer service representative. And she wouldn't budge.

Later, after filing a claim with DHL, I receive a letter from their lost control adjuster. It says that DHL is not liable for any lost package because it states that on the terms and conditions on the back of their air waybill. So, even if they lose a package, they claim no responsibility for losing it.

How do these people stay in business?

MRSA

Usually a lack of posts is a bad thing. In the case of the past two weeks, it simply means that there was nothing to say. Until now.

Yesterday, we met with the integrative medicine doctor to review Asher's blood, urine, and stool test results. To summarize: Asher has a huge amount of the MRSA bacteria in his gut and it's causing damage.

There are a few other minor issues which can be remedied, but the MRSA, obviously, is the big one. There were 50-60 pages of lab results and the ones that showed issues for Asher all point to the damage by the MRSA bacteria in his gut. If we take care of the MRSA (and, to a lesser extent, the Gamma Strep bacteria, which we can kill with the same antibiotic that we use for the MRSA), then his gut will heal.

After seeing these results, this is the first time ever in dealing with Asher's EE that I've felt hopeful that we're on the right track. I really and truly feel like we have found the cause - the reason for Asher's EE. I have read tons of medical journal articles which support the belief that harmful bacteria is one of the causes of eosinophilic esophagitis. I strongly suspect that if we can remove the harmful bacteria and help his gut heal, then his allergies will lessen.

The healing will not happen overnight. It's a 30-day regimen of antibiotic to kill the MRSA. We also have to repopulate his gastro-intestinal tract with beneficial bacteria too and create a healthy environment. And the gut heals slowly. But every journey begins with a single step.

We're on our way....

H*ly Sh*t!

Like the rest of the world, I am a HUGE Oprah fan. Her show gets TiVo'd daily at the HinJew household. If I get the chance, I watch it after the children go to bed.

If you have children and have not yet watched yesterday's show, go do it now. Really. Right now. You need to see it.

Until I saw yesterday's show, I had no clue that a Webcam is a pedophile's biggest dream-come-true. Merely plugging it in brings this slime into the bedrooms of our children where these perverts lure and manipulate our children into doing all sorts of lurid acts.

Yesterday's show highlighted a young boy, age 13 at the time, who plugged in a Webcam to enable him to speak to his friends online and, perhaps, meet some girls. He thought that the people he was talking to were 13 year-old boys just like him. They weren't. They were pedophiles and lured him into doing all sorts of things. Read his story now.

It's horrifying enough to learn this news. Yet it gets worse. With the help of a NY Times investigative reporter, they learn the identities of the boy's 1500 "clients". Many of them were pediatricians, teachers, guidance counselors, and other professionals with easy access to children. It truly frightens me as a parent to know that the people I trust the most with my children might hurt them.

But anything I say here cannot do justice to the excellent job Oprah and her team do in portraying the information. Please, watch it now.

First Day/First Grade

Simi's first day of first grade went well. He brought home an empty folder, a skinned knee and no homework.

The highlights of his day included making a new friend and playing freeze tag at recess.

So...there it is...

Scenes From The First Day of School

Observations from Simi's school:

A little boy holding his even littler sister's hand and taking her to her first day of class. He gets near the class and gives her a little push to the door ... then walks away to get to his own class.

A little girl taking her little brother to his first day of school. She gets him to the door of his classroom, kisses the top of his head, then pushes him into the room and walks away to get to her own class.

A mom trying to push a stroller (with an infant in it) and hold the hand of a toddler - in the mad crush of kids and parents - while taking another young 'un to the first day of class.

A little girl carrying a backpack which was bigger and wider than she. By the looks of it, the backpack must have been REALLY heavy.

The gym teacher helping a little girl find her classroom.

First Grade

Today is Simi's first day of first grade.

It's been an auspicious start to the year. Simi is not in the classroom we anticipated and the school is completely unorganized this year. For example, we haven't received any word on bus routes/times, so we had no idea where to wait for the bus, the bus number, or what time to be at the stop. Teachers said that last minute changes occured to cause students to be moved around as late as last Thursday. It's just a mess.

Simi's Kindergarten teacher speaks very highly of his first grade teacher and she has certification in teaching academically gifted children. She and the assistant teacher seem very nice.

As I was driving Simi to school on his first day, I flashbacked to his first day of Kindergarten exactly one year ago. Simi seemed nervous today, but much less nervous than he did last year. Simi also didn't seem as excited about the experience as he did last year. Although I didn't cry this year, I certainly felt like I wanted to.

As we entered the classroom, the teacher very nicely introduced herself to Simi and told Simi to choose a seat wherever he wanted. Simi just stood there and froze. I helped him find a seat. Simi introduced himself to the other children in the class and I watched him get started in putting his name on his bookmark. He wasn't as engrossed in the activity as he was last year.

I passed by the computer lab on my way out the door and was quite impressed by the equipment. Shiny new-looking Apple computers awaited students use. Nice.

Interestingly, just a short while ago, a charter school where Simi was waitlisted contacted me. Simi has a spot at their school - to begin in two weeks - if he wants it. Sigh...

I can't wait to hear how his day went.

Asher Update

Asher's great energy continues. It's obviously the vitamin supplements we're giving him that's making the difference. I'd never guess that something as simple as a multi-vitamin would make such a major difference.

So now the conundrum is....do we scope or not? According to the protocol set by the specialists, Asher should be scoped every three months because the damage is occurring inside his body and symptoms may not be readily noticed. So, according to these guidelines, Asher needs an endoscopy at July's end. Thing is, it's incredibly invasive and it hurts Asher and there is evidence that general anesthesia damages the mitochondria. Seems to me like after every scope, it takes Asher at least a week to recover.

The doctor at Duke suggests we not scope unless symptoms suggest it. But how do we know the culprit unless we scope? How do we know if all the vitamins and supplements and additional food are true passes unless we scope? What if damage is occurring and we don't see the symptoms?

So...do we scope...or not?

Milestones

It's been a big week for Leila here in the HinJew household. She's moved out of nappies and into training undies. She's very excited about it and showing everyone her new pink underwear. She says now she goes pee pee on the potty just like her boys. Well, Leili, perhaps not just like the boys.....

She has also made the long overdue transition from her crib to her big girl bed. She and I made the trek to the store to pick out new sheets for her new bed. She excitedly picked out sheets with the Disney princesses on them. I wasn't surprised; she's so into princesses these days. I suggested to her that we buy the Tinkerbell sheets too, so that she'd have a spare set. She didn't really care about Tinkerbell and just went along with it to make me happy. So now Leili is in her big girl bed and wearing big girl underwear.

In other Leila news, she insists we call her "Leila". We've been calling her "Leili" for nearly her entire life. Now, when I call her "Leili", she replies, "I not Leili. I'm Leila!". OK then.

My baby is growing up....

Energy!

For the third continous week, Asher's energy level and health remains GREAT. I'm on cloud 9! Something as simple as my child's good health makes me the happiest person on the planet. Woo hoo!

As Asher's energy level soars, so does his naughtiness. I guess that's to be expected. It's nice to have "normal" problems for a change.

Asher still struggles with cognitive stuff. It is my hope that as we balance his body nutritionally, this part, too, will improve. I'll keep you posted.

In other news, Leila is doing great in her potty training. She's got a lot of personality, that one. And Simi is having a ton of fun at science camp (in the morning) and native american indian pottery (in the afternoon). At science camp, they are exploding mentos in Coke, creating paste using corn starch and water, and making pennies rust with vinegar. It sounds very messy. He loves it. In pottery camp, they are making clay pots, clay snakes, and weaving baskets. I ask him which of the two camps he likes best. He likes both equally. Cool.

And Another Thing...

OK, perhaps you'll put this in the weird/crazy mom category. Or perhaps you'll see it as another piece of the "what's up with Asher" puzzle that will help us heal him:

Asher is SUPER ULTRA SENSITIVE to temperature. Until now.

For example, last year, both Simi and Asher took swimming lessons last summer. When I say it's HOT here in North Carolina in the dog days of summer, I ain't exaggerating one bit! Temperatures reach nearly 100 degrees and routinely hover over the mid-90s with 80-95% humidity. The swimming pool where they took lessons is heated to a temperature that it pleasing to the skin. Well, pleasing to everyone's skin but Asher. Asher was the only child wearing a thermal suit in a heated swimming pool in the hottest days of the Carolina summer. And he shivered.

At Asher's pre-school, they routinely have sprinkler days during the summer. The children love playing in the sprinkler! Asher wouldn't. He'd stay out of the sprinkler, stay on the perimeter of it and watch his friends play in the water. The cold water - even whilst wearing his thermal suit - hurt him.

I have mentioned this to Asher's doctors, who look at me as if I'm green and say, "everyone has different levels of sensitivity to things." I heard, "so what?" "It's no big deal." I always thought this temperature sensitivity thing was a piece of the "what's wrong with Asher puzzle" that was being overlooked.

Fast forward to two weeks ago: the boys were playing in a sprinkler. The temperature was about 105 degrees that day (really! that really and truly was the actual thermometer reading!). I didn't realize that Asher's thermal suit no longer fits him, and that it's also old, torn, and ratty. I found boys swim trunks that fit him and away he went to play with Simi and Leila in the water.

Water from the garden hose is COLD - A LOT colder than that lovely heated swimming pool. And here's my boy standing in the spray and getting SOAKED - with no thermal suit and looking as happy as I've ever seen him. Can it be that Asher is no longer super ultra sensitive to water temperature? Now...doesn't that seem bizarre?

The Great Energy Continues!

Asher's still feeling great. I wish I knew its cause so that we know what to continue doing! He's been feeling great for the past two weeks, which is far longer than any good wave he's ridden in at least a year and a half. I'm on cloud 9!

Both boys had an absolutely wonderful experience at gymnastics camp. Asher did things I never thought possible - for him. On Tuesday, my jaw hit the floor when I saw him playing tug-of-war. He (age 4) and two 5 year-olds tugged against three 6 year-olds. After several minutes, one of the 5 year-olds on Asher's side let go of the rope and sat down. To my surprise, Asher and the other boy managed to keep the tug going for MINUTES after that. I couldn't believe it.

On Thursday, Asher walked on the balance beam by himself - which is only the second time that's happened to my knowledge - and even got up on one of the higher beams and walked sideways on it by himself. I couldn't believe that one! On Friday, Asher was thrilled to show me how well he could dribble a beach ball and he LOVED playing volleyball(!). He jumped up and down in sheer excitement and hustled to get the ball so he could hit it. I couldn't believe the energy level in my kid! I began to wonder if my child was replaced by a totally different kid who just LOOKED like Asher!

In comparison, prior to these past two weeks, if Asher exerted himself for an hour, he would be wiped out for the next week. So in addition to all these new skills he learned, I'm completely surprised (and thrilled!) at his energy level.

Back in early January (January 7th, I believe), Asher was trying to walk down the stairs by himself in our house. He couldn't do it. He was so weak and clumsy and uncoordinated that he nearly fell and stumbled down the stairs. When first realizing that her child would tumble down the stairs, a good mom would have run up the stairs to catch him. I didn't do that. Instead, I grabbed the nearby video camera and filmed it so that I can take the video clip to the doctor and get an understanding of why he was suddenly having trouble going down the stairs. The doctor was also concerned and said it looked like a muscular dystrophy sort of thing. Yeah, I know, like that's comforting.

I'm thrilled to report that this past week, Asher trotted up and down the stairs - by himself - like it was nothing! Woo hoo!

Another huge improvement is that his hands haven't been shaking. Until recently, Asher has suffered from "Parkinson-like shakes" in his hands. Really. It was hard for him to hold a cup of his elemental formula because his hands would shake so much that he'd drop it. I'm proud to report that this past week, his hands haven't shaken like that at all! That's HUGE!

Again, I wish I knew what is making Asher feel so great. We'll just enjoy riding this great energy wave for as long as it continues...and hope for a nice long ride.

Amaranth - Day Six

We're one day past the dreaded Day Five of the amaranth trial and....so far so good. Phew! Of course it's just a tentative food trial pass until the definitive biopsy results.

Asher now has three tentative additional foods: banana, cauliflower, and amaranth. He's just about doubled the amount of foods he can eat. Gotta love that!

We chose amaranth because it's a low allergen grain which makes a great substitute flour to use in baking. Now, if only we could find amaranth flour. I can't find it anywhere! Who knew it would be so hard to find?

Asher and Simi are enrolled in gymnastics camp this week. Asher is attending in the morning; Simi attends all day. Both boys are doing GREAT at gymnastics camp. Simi is winning all sorts of ribbons for being the best in certain events. The counselors are coming up to me and saying how talented he is. Who knew?!

I was a bit concerned about Asher being in camp. Asher gets wiped out for a full week after a mere one hour of strenuous activity. You can imagine my concern about him being able to last for three hours a day for five days. So imagine my surprise at how great he's doing! Just today I watched Asher walk the balance beam all by himself. That's only the second time - ever - that I've seen him do that. AND, he got himself up on one of the high balance beams and walked sideways on it - all by himself. He's always been too scared to even venture on the high balance beam before - and to do it all by himself is absolutely amazing. I still can't believe he did that! He was also VERY proud to show me just how well he dribbled a ball. I think that's a milestone too. He was even more excited about that than anything else.

So, Asher's riding a great wave right now. It's a GREAT wave and a super-enjoyable ride. We'll just enjoy it for as long as it lasts.

Amaranth

We've declared cauliflower a tentative, preliminary success (until confirmed by endoscopy) and have now moved on to a new food trial: amaranth. Amaranth is a low allergen grain which makes a great substitute when baking. Raj has used millet previously, which is another low allergen grain with high protein. The downside of millet is that it's very crumbly. Hence the amaranth.

Saturday was day one of the amaranth trials. I cooked it according to the directions and served it to Asher. Simi, who was seated across the table from Asher, asked Asher what it tasted like. "Like cooked plastic", was Asher's reply. "HUH?", was my reaction. I tasted it and learned that Asher was right - it did, indeed, taste like cooked plastic. Poor kid. He's supposed to get some savory enjoyment from eating. It should be yummy, not disgusting. Why isn't it written anywhere that amaranth tastes like cooked plastic?

Asher's still eating it, though. Perhaps something new is better than nothing. I've started to add things like sugar and salt into it (so that it tastes like sweet/salty cooked plastic). Raj suggested to Asher that, since Asher is the Little Chef, that he do some testing with the amaranth to get it to his liking. We all loved that idea and now the Little Chef gets to do some cooking!

The First Grader

Simi is - officially - no longer a kindergartner. Today was his last day in the kindergarten class. He officially joins the first grade class when he returns to school.

Simi ended the year reading at a level 30. I think that's a third grade level. The expectation is that children finish kindergarten reading at a level 4. Shucks, he STARTED the year reading at a level 14!

He has been doing first grade math all year. Simi's teacher tells us that during math time, Simi will always create math equations where he has to subtract. I think he's already mastered addition and likes the challenge that something new, like subtraction, brings.

To celebrate, Simi and Asher got to go play at Monkey Joe's. They had an absolute blast.

My baby is growing up WAY too fast. Pretty soon, he'll be moving off to college. Sob....