Tuesday, November 11, 2008

Interesting Article . . .

Yeh, yeh, yeh . . . I know, I forgot to post yet another "Not Me Monday." =0) Honestly, I haven't had too many "Not Me's" this past week. Apart from that, it was a rough weekend. My mom went out of town to take a bit of a break. Everything was fine when she left . . . until Saturday.

Both Isaiah and my Dad were sick! Isaiah was having issues sleeping, irritability, and with his speech (which was really bad). My Dad had problems with dizziness, feeling faint, feeling too cold, along with a few other things.

My Dad was vomitting and was beyond pale - he was grayish-blue! I almost called the ambulance on Saturday for my Dad. He was trying to help my brother
on Saturday, but he couldn't because he was so sick. When he came home, he fell asleep in the chair. He didn't drink much and didn't feel like eating anything. His voice became so hoarse and he was ice-cold to the touch. I was really worried about him. After a good nap with a couple of warm blankets, his color improved and he started to act a little better. He still wasn't feeling all that great on Sunday, so he just rested all day.

At the same time, Isaiah was having his issues. Since his speech was so bad, along with horrible mood swings and telling me that cars had crashed into the house, I wasn't sure if he needed to go to the hospital as well. His speech went from clear to extremely slurred. His "helicopter" changed to a very slurred "hel-i-hop-a-hopper" (I had to ask him
several times to repeat this before I figured out what he was saying) and when he wanted a drink (he normally says, "dwink puh-wees") he just kept saying, "ging ging." Along with that, Isaiah's rash started spreading. The stuff on his feet grew and turned bright red. The stuff on his legs did the same and new patches appeared. The rash around his mouth was bright red and spread to his cheeks and forehead. He even had a rash on his tush (and the purple scars from one of the rashes turned red as well). Even on Sunday, Isaiah's speech wasn't that great. It was almost like he regressed - he was babbling incoherently. His speech is a lot better - yesterday was better than Sunday and today better than yesterday. He's still not himself, but he's getting there.

Anyway, on to the article. It's scary how much this sounds like Isaiah. I feel bad for this little guy. It's always nice to be able to identify with someone, though I would never wish this disease on anybody. I wonder if she knows about mastokids.org and their mom-to-mom program??? =0) Hmmmm, maybe I should e-mail the columnist. . . =0) Oh, yeh . . . I should point out that 1) Isaiah's rash does not look like this little guy's rash, though it does sometimes look like a bunch of bug bites (this little guy has UP), 2) The person I got this article from didn't like it, and 3) I can understand the mom's paranoia. =0) Another thing that differs is that this child can eat more than Isaiah can and Isaiah has also had to use the Epi several times.

Anyway, the article =0)

This article came from:

Sewickley Township boy allergic to the world

By Jennifer Reeger

Friday, February 8, 2008

Lisa Boytim fears for her son's life every second of every day.

She's petrified of him running in grass or playing in dirt.

She worries about bee stings and spider bites.

She monitors the change in the weather like it's the difference between life and death.

Because for Cole, it is.

The brown-eyed 5-year-old suffers from mastocytosis, a rare disease that makes him allergic to nearly everything.

Sunlight, rain, alcohol, perfume, red dye on clothes and in food, and a bee sting can send him into anaphylactic shock.

"He's always ready to go off like a bomb," Boytim said. "He's in a life-threatening state, ready to go all the time."

Cole's disease is characterized by a rash that covers his body. His internal organs, including his lungs and his gastrointestinal tract, also are caught up in the disease.

And so is his family.

Cole and his family -- including his dad, Scott, and three older siblings -- have lived with the disease since Cole was 2 1/2 months old.

It was two weeks after Cole's first set of immunizations that Lisa Boytim noticed a rash on his body.

She took Cole back to Mt. Pleasant pediatrician Dr. Bharati Desai.

"She knew immediately what it was," Boytim recalled. "She said, 'Now don't get scared. He's probably going to grow out of this by the time he's 9 months to a year.'"

Desai said she recognized mastocytosis because another patient, now a teenager, had the disease in a much milder form.

"I was just at an advantage of seeing it, of knowing what it looked like," Desai said.

The Boytims learned more about the disease and noticed other things -- how Cole didn't handle the heat well during the summer, how his symptoms got worse when aerosol cans were sprayed or with a whiff of perfume.

And they realized the disease was much worse than a rash.

Cole's body overproduces mast cells, which release histamine as part of the natural immune response. His body has too much histamine, causing an allergic reaction to nearly everything he contacts.

At the front door of the Boytims' Sewickley Township home is a simple wall hanging that says, "Home is where your story begins."

Home is where Cole spends all of his time. It's where he plays. It's where he will be educated.

The outside world holds too many things that could send Cole into shock.

Boytim can tell the weather's going to change by the way Cole's rash reacts.

The red bumps that look like bug bites are a constant in his life. Sometimes they get considerably larger.

Boytim remembers a winter day when the weather shifted from 50 degrees to a snowstorm.

"Each one of those spots tripled and then quadrupled in size, then started forming on top of one another," she said.

Then came the itching, the pain, the diarrhea, the vomiting.

"That's not even a worst-case scenario," she said. "He can go into shock for something like that."

On good days, Cole will notice some of his spots have disappeared.

"He'll tell me, 'They go on vacation,' " Boytim said.

But they always come back.

Cole still wears a diaper. His disease has so affected his intestines that bowel movements burn and cause him great pain.

He routinely suffers from diarrhea.

For a time, Cole went to the Cleveland Clinic for treatment. Now, he takes once-a-year trips to the University of Michigan, where a research project on the disease is under way.

There is no cure, but there are a lot of medications to alleviate the symptoms.

Cole takes medicines four times a day -- antihistamines for the allergic reactions, another for his lungs, another for his intestines.

"Can you imagine trying to explain this to somebody and have them watch him?" Boytim says while attending to her son's medications. "I don't get out."

Boytim works like a pharmacist -- mixing concoctions in a baby bottle that Cole can't seem to give up. She adds some baby formula, which, until he started to eat solid food recently, was his sustenance.

"There's too much food he's not allowed to have," she said.

Eggs, waffles, pancakes, bacon, cabbage rolls, hamburgers and Chick-Fil-A chicken fingers round out the list of what Cole can, and will, eat.

The family has turned their lives upside down for Cole.

Lisa Boytim used to work as a hair stylist. But the chemicals she came into contact with exacerbated Cole's condition.

The family moved to a sprawling home in Sewickley two years ago from West Newton. There, they found a home that had another building on the property -- one where Scott Boytim and his father moved their machine shop so he'd always be nearby if Cole needed help.

Lisa Boytim rarely gets out of the house. Cole sleeps in his parents' bedroom.

"What if he gets bit by a spider in the middle of the night?" she said. "What if the temperature changes? If something would happen to him, I'd never get over the guilt."

The other children make sacrifices, too.

Nicolas, 7, has never been to school. Boytim plans to homeschool both him and Cole to keep germs at a minimum.

The oldest kids, Brooke, 12, and Matthew, 14, attend Yough Middle School. The Boytims didn't feel it was fair to pull them out.

Instead, they are quarantined at the first sign of illness.

Brooke misses their old house in West Newton, where they had a pool.

"We can't go to the movies and the mall or go out to eat as much," she said.

But it's Cole who sacrifices the most.

He's old enough to understand what he's missing in the outside world, but too young to figure out why.

Cole has tried to escape so many times that the Boytims changed the lock configuration on their front door.

There are summer days when Cole will sit and wait for an opportunity to go outside -- if only for a moment.

"I'm just amazed at the grace that he has for a little child," she said.

But there are the tantrums of youth.

Plywood replaced a window pane in the Boytims' living room after Cole smashed through it with a broom handle in an attempt to get outside one day.

"It makes me mad," Cole said.

And that makes his mom sad.

"He likes the wilderness. He loves the outside, and that's the hardest part," she said. "He wants to be a part of something he can't."

But he makes up for it with imagination. He runs a plastic dump truck for hours, then switches to safari mode, filling a pillowcase with household items he "hunted" for.

Cole's prognosis is ever-changing.

Doctors first thought his disease would last a year, then to early elementary school, then to puberty.

Now, the Boytims are being told Cole might have mastocytosis into his late teens or early 20s, even for life.

They worry about the damage the disease might do to his bones and organs. Each spot on his body has the potential to turn cancerous.

For now, the Boytims are hoping to raise enough money to build an indoor playroom -- a place where Cole can ride a bicycle, play in sand, swing and slide, and climb a fake tree house.

They hope that all their efforts will keep him safe.

He's never gone into anaphylactic shock. They have never had to inject him with the emergency epinephrine that's always at the ready.

"I think it's because we've kept him in this bubble," Lisa Boytim said. "I think if we would have pushed it, we would have used it by now."

Jennifer Reeger can be reached at jreeger@tribweb.com or 724-836-6155.
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1 comment:

Anonymous said...

Wow, Kel, that article sounds really biased and misleading. Whether he has systemic masto or another form is unstated. I do not wish to pick on the other mom, because I only know what the writer decided to tell us. What I will say is that I am grateful for the grace which you express and the genuine love that makes your sacrifices not a sacrifice but a privilege for you. You never complain, you may wish for some things, but I have never heard you say how this is "unfair" to you. If you see a negative here, it is only because you are hurting for Isaiah, not for the changes you have made for him. I pray that if the writer has cleary portrayed the other families' feelings, that God can minister to them before this child feels that he is bad or has ruined his family by being alive. It makes me appreciate your courage and grace, although perhaps at the comparison between a family that may be ignorant to that level of grace.