Monday, November 24, 2008

"Not Me Monday!"

That's right, I really did not forget this week's Not Me Monday.

Just in case you were wondering where Not Me! Monday came from, it was started by MckMama . . . check out her blog . . . http://www.mycharmingkids.net.


. . . but instead of a list of Not Me's, I was just going to post some pictures of my cute little guy of whom I most certainly did not take a ton of pictures . . . I wouldn't dare! ;0)


Okay, so I couldn't resist! . . .

I did not take Isaiah's batteries out of his V-Smile Pocket to take all of those pictures of him. No way, I would never do that! Not even if they are rechargable and he has a power cord to go with the thing. That's just not right!


I did not give my child a set of those scary teeth (you know, the ones that glow in the dark and look like extremely sharp teeth). Nah, I would never do that!

"Sca-wee"

Isaiah did not say that his baby doll needed to go to the doctor and proceed to give the doll a shot, IV, breathing treatment, and other "meds". Nope, he wouldn't know how to do such a thing! ( but I have to mention that it was cute, though . . . what an imagination! . . . you know, if he would ever do such a thing) =0)


No, this was not CPR, he was kissing the baby. =0)

Saturday, November 15, 2008

Trip to All Children's


The car is loaded up and ready to go . . . as soon as we get in the car, of course. =0)





I guess I was hoping for more information from this doctor's visit. I think I was hoping that they would prescribe one med instead of keeping Isaiah on the 10 he is already on and adding 2 new ones (well, adding 1 and exchanging one). He now has prednisone and elocon added to the regimen of 10 medications, bringing the total to 11 meds a day (the elocon replaces the triamcinolone). Thank God, it's not 12! =0) Seriously, though - thank God!

Anyway, the appointment went as expected. NO leukemia (which I figured, but it's still scary to hear the word)!!!! His eosinophils, RBC, HCT, HGB, Anion Gap were high, along with the IgE levels (which I will get to in a minute). He actually had a few lows (Osmo, Retic). His IgE level from 2006 went from over 700 to 2,000!!! I guess that explains some things. His levels with the foods haven't changed at all, and the levels to cats and dogs is close to being off their charts. We were told he needs to stay away from animals as he is so sensitive it could set him off. Good thing we don't have any pets apart from the fish! =0) That also means visiting homes with pets . . . there is no guarantee that the antihistamines will control the reaction (which has resulted in anaphylaxis). His other levels (the specific food IgE levels) did not change. His allergies to the usual allergy suspects are still off the charts - we won't be adding any new foods for a while. The doctors are skeptical, with his levels, that he will ever be able to eat any of those foods. We are still looking at a strict avoidance of milk, eggs, wheat, soy, peanuts & tree nuts, all seafood, beans . . . I could go on, but you'd be here a while. =0)


The doctors said that they want Isaiah on a low dose of steroids for a while, to stop the anaphylaxis episodes from happening so often - they didn't like the idea that Isaiah has the episodes 4 to 5 times a year . . . he's already had 4 or 5 so far this year. They also classified his eczema as severe and gave Isaiah the elocon to help control the rashes. Elocon is usually not something that they prescribe unless it's warranted in children. It's also not something that Isaiah will be on for an extended period of time - too much of the topical steroids can cause cataracts.

We are now to give the Epis at the first sign of a reaction - even just vomiting/diarrhea/cramps (like a couple of nights ago), itchy throat (along with hoarseness and tightness), breathing difficulties/coughing/wheezing, weak pulse/fainting/dizziness, and unconsciousness. Any one of those merits the use of the epi. Of course there is also the usual hives and edema. I hate giving the Epi - it's huge! It looks like it hurts so much, yet I don't want Isaiah to die either. I don't like him getting sick, I don't like him being in pain, I don't like the discomfort of these now confirmed "severe" rashes. It's hard to watch him go through this. He is so brave.

The doctors said that allergy shots would be too risky - he's too sensitive. He could have a severe reaction just from the shot. There are allergy shots available for food allergies, but, again, Isaiah is way too sensitive. There are also only a few shots available for food allergies and still not worth the risk to Isaiah. The doctors wanted to do skin tests, but his IgE levels are just way too high (from the RAST testing - a blood test). He's allergic to soooo much stuff.

For now, we except thing for what they are, with a hope for healing and a different future. For now, Isaiah has this horrible disease along with the rest of these allergies. However, I know that God is able to do amazing things - God can heal Isaiah. Maybe we won't see Isaiah healed today, but there is always a hope for tomorrow. For some reason, God has Isaiah here. God knows what He's doing, even if we don't know the whole plan. At this point, I don't need to know the whole plan, just as long as God gives me the strength to get through this. As long as God gives Isaiah the strength to get through this.

On a lighter note, Isaiah seems to be feeling better. He is giggling again and less grumpy. On our trip home, Isaiah was wide awake and talking/singing for almost the whole time. There was one time where Isaiah was crying. He was inconsolable and crying, "Help me, Mommy!" I felt awful! When I pulled off at a gas station and got him out of the car, he was still crying - he looked like he was in pain. I just kept thinking, "Oh, not here. Not now. PLEASE!!! We are too far away from All Children's and not close enough to home for this to happen!" Well, there was no need to fear . . . I took Isaiah into the bathroom where he told me to take off his diaper. What??? So, I did. I asked him if he wanted to sit on the potty and he said, "Yes!" I didn't think the child would ever stop peeing!!! =0) Isaiah went to the potty!!!! YAY! =0) Of course as soon as we got home, it all ended. Yup, he won't go near the potty! =0) Go figure! I guess it was one of those one-time things. =0) At least he has the idea, right?

We also got stuck in pre-launch traffic!!! Ugh! It was stop and go for sooo long, but we finally made it home . . . and before the shuttle launch, too! Yup, we saw the whole thing! It was amazing! The sky was clear enough this time to actually see the night launch, too (the time before was pretty cloudy and you only saw a little bit of the launch before the shuttle was covered by clouds)! =0) I have a video of the whole thing. Isaiah loved it! I also have pictures of the moon - it was just a beautiful night last night!






If you listen closely, you can hear Isaiah's excitement . . . and you can see where I was having issues with the tripod (and the camera because I was arguing with the tripod) . . . and where I picked the tripod up because I gave up on using it! =0)

Wednesday, November 12, 2008

ER visits at 2 AM


Isaiah had a rough night last night. In fact rough is an understatement. It all started with a slight rash and flushing in WalMart while we getting our groceries. He didn't touch a thing and wasn't in an area where anything would have bothered him. I gave him Benadryl and he seemed fine after that. Once we got home, I gave Isaiah a bath, gave him his usual meds, and put him to bed. He seemed absolutely fine.

Then, around 1 or so, he started itching and squirming. That turned into moaning in his sleep along with drowsy crying . . . then he woke up and put his feet on me trying to get comfortable. That turned into him grabbing me and vomiting. It was out of the blue! His spots of rash turned bright red and grew in size (along with a few new patches appearing). I, of course, gave him more Bendaryl and watched to see if he needed an Epi. He continued vomiting (and begging me to "go doctor please"). It broke my heart! So, we went to the ER at 1:45.

They took him back very quickly. His BP was low and he was extremely pale with bluish-gray lips. He was mostly responsive (he would look at you, but not necessarily say anything to you). When the nurse asked him what hurt, he pointed to his tummy, head, and legs and said, "it hurt." =0( (we have been working on the what hurts question) When they gave him the IV, he didn't even flinch! No tears, no emotion, he just sat there! I don't know if he was being even more brave than usual or if he was just that sick. He got the usual allergic reaction cocktail (a med like Benadryl, more Zantac, and Prednisone) along with some fluids. Oh yeah, he also had a shot of sodium chloride to stop the vomiting (did I get that right???).

We were in the ER until about 5 or so, when they released us - the doctor said that I probably knew what I was doing by now. =0) Nice guy . . . he actually knew what Mastocytosis is! That's good to know . . . maybe all of Isaiah's reactions from now on will happen when people like this doctor are working! =0) Anyway, Isaiah thanked the doctor for making the "icky go bye bye." =0)

Sorry this is all broken up and close to unintelligible . . . I had no sleep last night because I was checking and praying over Isaiah the whole night. It's scary that reactions can actually happen at night, while the child is sleeping, while you (the parent) are sleeping! I'm so glad that I wasn't so asleep that I couldn't help him. I am also glad that his reaction wasn't as bad as it could have been. The doctor said it was all the meds in his system . . . I say that God was watching out for Isaiah.

Today, Isaiah has done well, apart from another rash on his face (which can be expected . . . sort-of). As long as we can go 24 hours without another reaction, Isaiah will be good. We still have a few more hours to go, so please pray that he does fine. His speech went from the improved state it was yesterday to being back to the way it was on Saturday and Sunday. The only difference is that it seems to come and go today - some things are easier to understand than others. On Saturday, nothing he said was easy to understand.

Well, since my brain is suffering from lack of sleep, I'll only write a bit more to say that our appointment at All Children's is still on for Friday. We will leave tomorrow for a 3-hour drive to St. Pete. I will keep you guys posted (as soon as I can, anyway). Keep praying for Isaiah (and thank you for your prayers)!!!!

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
TRIBUNE-REVIEW

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.
Back to headlines

Thursday, November 6, 2008

Okay, so I haven't posted anything for a while . . .


. . . and I thought that maybe now is as good a time as any. =0)

Just to keep you updated, Isaiah has his appointment with All Children's next Thursday in St. Petersburg! We will get the lab results back at that time and Isaiah might be started on a low dose of steroids to help with the anaphylaxis (and maybe the rashes). Of course, Isaiah still has the rash around his mouth that he had at least 1 month before the last appointment.

I don't think the rash is fever blisters like they expected. He has also had bouts of rash on his back, near the diaper (like he did in Feb./March). Who knows? I am just hoping it's not a cycle - that was not fun - for Isaiah nor me! He hasn't been sleeping well, so please keep that in your prayers. He has been so tired and the bruising continues, now we are having sleep problems yet again. I feel so bad for the little guy! He also hasn't been eating much and, believe me, Isaiah can be a little pig! =0) We're lucky to have Isaiah eat one meal a day right now (he just doesn't want to eat even if you offer him his favorite foods).

Yesterday, we had Isaiah's IEP meeting. It looks like we will have some kind of therapy twice a week, starting on Monday. Isaiah will have therapy to work on life-skills (such as dressing, motor skills, and a few other social things). This part of therapy will be done over an hour, gradually increasing his attention span to about 10 minutes at a time (over a year). The second session will be for speech. Speech therapy will only last about 20 to 30 minutes, whichever Isaiah tolerates best. Again, the therapist will start with about 5 minutes per activity, then increase to about 10 minutes (again, it will take about a year).

The ladies who will be helping with Isaiah are really nice and Isaiah seems to like them. =0) I am excited to begin the therapy - maybe I will know a little more about helping him and my students! I still can't help but feel like I didn't do something right, like I should have been doing something else with Isaiah to help him learn these skills. I guess that's just the mommy part of me. I know that there are just some things I won't be able to fix and that there are things Isaiah will need help with . . . from other people. It's just hard to accept that reality (sheesh, and I thought this was going to be a light "post"). =0)

One of the cool things about the therapists coming to our home is their willingness to accommodate Isaiah. When they come to work with Isaiah, they will change into scrubs that they will leave with me to wash - to make sure they do not have something on them to cause Isaiah to break out or anaphylax. They will also wash their hands with our special soap to make sure they do not have any residues on their hands!!! Of course, I know how washing so much can lead to dry skin (you should see my poor hands), so I have Isaiah's special lotion already in the bathroom for them! =0) (I hope that helps, guys!)

It's so neat to be on the other side of this - to be the parent of the child receiving therapy. I know some methods, but it will be nice to get a refresher course! =0) It will also be nice to get the speech therapy portion of therapy.

On another note . . . I am finally almost finished reading the book, Potty Training in One Day. Okay, so it sounds too good to be true, but it's really not done in one day. It's actually introduced over a period of time (through our lovely Potty Scotty . . . a doll) and then once the child gets the idea from the doll, the child gets the chance at potty training. Now, Isaiah began potty training at the beginning of this year. He was showing a lot of interest and was really excited about going potty on the potty chair/big toilet, that is until he got sick. We were potty training about the same time that Isaiah started getting the horrible rash. He was doing so well, too! He was staying dry most of the day (apart from a few accidents here and there) and was doing both number 1 and number 2 (terms for discreteness) in the potty. He was so proud of himself, too! Until he got really sick. Then he decided that the potty was the enemy. He has only sat on it once or twice since then.

He will sit on his little potty, but he is just so tall that it doesn't work well. Yup, we have a potty that has never been used. Oh, yeh, there was one time where he accidentally did number 1 in his potty (diaper leak while he sat on it). So, I guess the potty has been used, you know, apart from putting toys in it! =0)

Anyway, we have had the book and the doll for a while, but Isaiah just wasn't interested in it. Initially, I thought that I could introduce the doll, then Isaiah might just catch on. Well, he caught on . . . . just not the way I thought he would (he likes the doll using the potty . . . and Blue). =0) I guess that means mommy should have read the book. =0) I am almost done, and Isaiah has gotten a kick out of me narrating it to him!

That's everything that has been going on here, at least right now. I will post more a little later on . . . I know I haven't posted in a while. I kind of missed the last "Not Me Monday" and the last few "Wordless Wednesdays". I will work on it . . . =0)

Wordless Wednesday . . . on Thursday =0) (and a few extras)


















(Just a note . . . not all pictures are from Wednesday . . . but they're still cute!) =0)