You may notice that each post for the next few months will begin with words like "afraid", "scared", "worried", "yikes" and "Oh my sweet potato pie".
Please don't come away with the impression that we are a family of 'fraidy cats. Its just that the process of giving our son daily doses of a deadly poison, tends to make our knees weak.
This last trip saw our son's twice daily dose increase to an undiluted one tenth of of a cc of peanut protein in a liquid suspension. In terms that might be easier to understand, the amount of liquid that he is taking, is less than the size of a quarter inch of the length of a number two pencil. It is smaller that one of those little round lego pieces with one knob on top. In volume, if you were to cut a penny in thirds, this is about the same amount as one of those thirds. Compared to a can of soda, it would take 3550 of these doses to equal one can. In short, there is not a lot of stuff in these doses.
To combat the natural response of his body, he is on a 24 Antihistamine, a twice daily inhaler and is required to rest for at least two hours after each dose.
Nathan is doing great, despite a rash that the doctor is not positive is related and slight swelling around his eyes, he is a trooper and is taking it all in stride.
As a parent, I would take a bullet for my son and I have to tell you that the feelings of helplessness here are tremendous. This semester will be a great lesson in trusting God's grace.
Tuesday, July 31, 2012
Tuesday, July 24, 2012
There and Back Again
Well, we returned last evening from the second appointment for our son's peanut allergy. We were a bit more than nervous due to his reaction after the last visit. Last week they sent us home with 0.5 cc of 1/10 dilution doses, but after a night of vomiting and stomach cramps they moved him back to 0.25 cc of the same dilution.
This week they bumped the dose back up, observed him and sent us home. So far there has ben no adverse reaction, which points towards and increasing tolerance to the legume.
We shall see.
This week they bumped the dose back up, observed him and sent us home. So far there has ben no adverse reaction, which points towards and increasing tolerance to the legume.
We shall see.
Sunday, July 15, 2012
The Fourth Ice Age?
I don't know your opinion on global warming or climate change or whatever the recent term we are supposed to use is, but the undeniable fact is that the fourth Ice Age has arrived. While I think the first Ice Age was a better movie, this one was a pretty good movie.
This week we have friends staying with us and so we went in a herd of eight to the theater. The noteworthy thing about this outing was not the number of our party, but rather that this was the first real outing since we began the peanut protocol that Nathan showed no signs that the activity adversely affected him.
I know that we are going to face difficulties over the next twenty weeks, but this afternoon was not one of them. Woo Hoo!
This week we have friends staying with us and so we went in a herd of eight to the theater. The noteworthy thing about this outing was not the number of our party, but rather that this was the first real outing since we began the peanut protocol that Nathan showed no signs that the activity adversely affected him.
I know that we are going to face difficulties over the next twenty weeks, but this afternoon was not one of them. Woo Hoo!
Home Again, Home Again... Jiggity Jig
Anyone interested in living in the big city should take an hour or two and drive around the Dallas/Fort Worth Airport area and then take a stroll through the GrapeVine Mills Mall. I can think of no better cure.
People, people, people.
Our original plan included spending Saturday at the Forth Worth Stockyard and Sunday at the Grapevine Mills Mall visiting the Legoland Discovery Center and the Aquarium there. It became apparent very quickly that this new peanut protocol would not allow for either. And so, rather than spend the weekend stuffed into our hotel room, we woke up Saturday morning an began the slow trudge home. I may chronicle the directionally challenged misadventures of the journey in a later post, but suffice to say that Texas would do well to invest in a few sign makers to help out with the construction confusion in and around the Dallas/ForthWorth area (Fort Worth/ Dallas area for Allison).
We arrived home safely and even gave Nathan a dose of peanut protein on the way. He seems to be handling the 0.25 cc dose much better than the 0.5 cc dose and though it will mean that his treatment will be extended, we feel good that Dr. Foster is being cautious with our son.
Friday, July 13, 2012
A Little Trouble In The Night
With Rush Day going so well, we decided to go out to eat at Olive Garden to celebrate and then came back to the hotel to rest. Around six P.M., we decided that he was doing well enough for a lazy dip in the pool.
All went well and we came back to the room and settled in for the night. Nathan slept sound until 1:00 A.M. When he woke us to let us know that his stomach hurt. I fed him a few crackers and he fell back to sleep for half an hour when he started vomiting.
He threw up again at 2:00 A.M at which point Kerri took over and found Cool Runnings on TV. After a long bout of abdominal pain, Nathan fell asleep around Four A.M. and slept soundly until Seven when I woke him for a required dose of antihistamine.
After breakfast at nine, he took his morning dose and seemed to do well, so well that around noon, we decided to try Cracker Barrel. Lunch went well, but afterwards, he began wheezing so we gave him Benadryl and when that didn't seem to work quickly enough, he took two puffs of the rescue inhaler and we took the rest of the day off in the hotel.
The doctors office had warned us that Nathan should limit his activity after the treatment, but we have been amazed at how little activity seems to set him off.
Not being convinced that things were going quite as they should, we call Dr. Foster and he decided that we should reduce the dose from .5cc to .25cc of diluted peanut solution. It is kind of scary to think that the reaction that Nathan is having is due to .05cc of peanut powder. That is less than .01 of a teaspoon.
So, this may not be the walk in the park that we imagined. Nathan is probably going to have to reduce his activities this semester as will the family. Nathan's reaction to the treatment is similar to a lot of the kids who have ended up dropping out of the program. So far, our son does not seem deterred by the difficulties and seems to understand that the short term pain will result in a safer and less constrained long term life.
We encourage you all to pray with us for Nathan, his resolve and God's hand in all of this to change the way his immune system handles the peanut protein.
All went well and we came back to the room and settled in for the night. Nathan slept sound until 1:00 A.M. When he woke us to let us know that his stomach hurt. I fed him a few crackers and he fell back to sleep for half an hour when he started vomiting.
He threw up again at 2:00 A.M at which point Kerri took over and found Cool Runnings on TV. After a long bout of abdominal pain, Nathan fell asleep around Four A.M. and slept soundly until Seven when I woke him for a required dose of antihistamine.
After breakfast at nine, he took his morning dose and seemed to do well, so well that around noon, we decided to try Cracker Barrel. Lunch went well, but afterwards, he began wheezing so we gave him Benadryl and when that didn't seem to work quickly enough, he took two puffs of the rescue inhaler and we took the rest of the day off in the hotel.
The doctors office had warned us that Nathan should limit his activity after the treatment, but we have been amazed at how little activity seems to set him off.
Not being convinced that things were going quite as they should, we call Dr. Foster and he decided that we should reduce the dose from .5cc to .25cc of diluted peanut solution. It is kind of scary to think that the reaction that Nathan is having is due to .05cc of peanut powder. That is less than .01 of a teaspoon.
So, this may not be the walk in the park that we imagined. Nathan is probably going to have to reduce his activities this semester as will the family. Nathan's reaction to the treatment is similar to a lot of the kids who have ended up dropping out of the program. So far, our son does not seem deterred by the difficulties and seems to understand that the short term pain will result in a safer and less constrained long term life.
We encourage you all to pray with us for Nathan, his resolve and God's hand in all of this to change the way his immune system handles the peanut protein.
Thursday, July 12, 2012
The Final Dose
Well, there we go. At noon, they administered the last dose and we are going to wait and see if there is any reaction.
Number Five is Alive
11:32 and we have just completed five doses with no reaction. One more dose to go and then we wait a few hours so they can observe him. After that we are free to go.
Thanks for your prayers
Thanks for your prayers
Third and Fourth Doses
Well, here we are at eleven A.M. Four doses down with no adverse side effects.
Nathan felt that the third dose tasted funny, but the fourth had no taste. Apparently this last dose is the dose that we will take home. 1/10 dilution.
Also, it seems that they do not expect Nathan to have a reaction during this visit. We had expected that they would bring him to the brink of anaphlaxis, treat him with Epinephrine, observe him and then send us home with a lower dose.
So far, this is going much less dramatically than we had expected and so much more pleasant than we could have hoped for.
Nathan felt that the third dose tasted funny, but the fourth had no taste. Apparently this last dose is the dose that we will take home. 1/10 dilution.
Also, it seems that they do not expect Nathan to have a reaction during this visit. We had expected that they would bring him to the brink of anaphlaxis, treat him with Epinephrine, observe him and then send us home with a lower dose.
So far, this is going much less dramatically than we had expected and so much more pleasant than we could have hoped for.
What? The second dose already!
Moments after submitting my last post, the nurse came in with a second dose. Nathan reportedly could taste something different this time, but then, he admitted to having no recollection of what peanuts taste like.
Two doses down.
Two doses down.
Rush Day... The Adventure Begins!
This morning began innocently enough, waking early, tickling the kids awake and the mad rush and tumble that is our morning process of getting ready. This morning was complicated by the fact that the five of us were in a small (but very nice) hotel room, with only one bathroom. I cannot imagine how we survived in the Edwards house with only one shower.
This morning was also complicated by frayed nerves as we prepared to begin the peanut Desenatization treatment. Trusting doctors is a difficult thing, especially when you are trusting them with your first born.
Regardless, we made it out of the room on time and drove a distance that we probably should have walked and arrived at the Southwest Allergy and Asthma Clinic just before nine o'clock.
After a decade of avoiding peanuts, and protecting Nathan from situations were he might be exposed, it was a little anticlimactic to watch as he downed a tiny bit of liquid that apparently contained some minute amount of peanut powder.
Even though the medicine is the same poison that we have avoided like the plague, he handled it like a man and so far has had no adverse side effects.
In just a bit, they should be in with a second dose. Keep on praying.
This morning was also complicated by frayed nerves as we prepared to begin the peanut Desenatization treatment. Trusting doctors is a difficult thing, especially when you are trusting them with your first born.
Regardless, we made it out of the room on time and drove a distance that we probably should have walked and arrived at the Southwest Allergy and Asthma Clinic just before nine o'clock.
After a decade of avoiding peanuts, and protecting Nathan from situations were he might be exposed, it was a little anticlimactic to watch as he downed a tiny bit of liquid that apparently contained some minute amount of peanut powder.
Even though the medicine is the same poison that we have avoided like the plague, he handled it like a man and so far has had no adverse side effects.
In just a bit, they should be in with a second dose. Keep on praying.
Thursday, July 5, 2012
A "Cure" for Peanut Allergies?
Big Jim Cole once said, "Ain't a man alive, hasn't got trouble. How he deals with that trouble's what counts."
Our trouble for the last decade has been peanuts. For most of you, reading this blog, these small "beans" have been a staple in your diet for longer than you can remember. Roasted, candied, ground into a buttery paste, as an oil or by the handful, these same small legumes have become to us, a poison, deadlier than any snake venom.
Our son, was diagnosed just before his second birthday, with an anaphylactic reaction to peanut protein. That means that anything remotely related to peanuts, or processed in the same factory as peanuts has been off limits to our family for the last decade. We are constantly checking labels and avoiding restaurants that use peanut oil or peanut products in their food.
Double Dave's pizza was taken off the safe list when they introduced Thai pizza. Chili's restaurant was recently added to the list of off limit food establishments when they added a peanut drizzle salad dressing and a peanut butter brownie dessert to the menu. Baskin Robbins is out because of cross contamination in the scoops and don't even mention Chick-Fil-A, They fry everything in peanut oil, or at least did until recently and even if they changed over, how long until they have sufficiently cleaned the peanut residue off of everything. We even had to forgo canned spinach from Walmart because it contained a peanut warning (not a big sacrifice there). Accidental contact has our biggest fear and has in fact sent us racing for the hospital on more than one occasion. I am not complaining, just explaining the reality of life with a peanut allergy.
It really has not been that much of a sacrifice. We learned to read labels, ask questions and stay nearby when he was out of our control. I ate a PB&J sandwich most every day of my life for the first 23 years, giving it up was not a big deal, it was what needed to be done. My wife has missed M&Ms and I miss chocolate covered raisins. Both of which are manufactured in facilities or on equipment that also processes peanuts. Life without peanuts is not nearly as hard as life without two feet. Like with so many other things that are thrown our way in life, we pull back, regroup and move forward.
There have been little issues, school cafeteria serving unsafe food, birthday parties with unsafe cake mixes, Halloween, Easter baskets, etc. But for the most part, we have remained safe within the walls of the little world we have created. Safe, that is until this year when our son expressed a desire to go to high school! Having finished the eighth grade at the top of his class, it seems only logical. But the world of high school is a wide open, scary place where none of the safe guards we have worked so hard to set in place will be. It really feels like we are sending our child swimming with alligators.
And so, you can imagine our delight when, after years of searching, we found a facility less than 500 miles from our house that has successfully desensitized over 40 people with similar peanut sensitivity.
We begin treatment soon and will keep you posted on the progress. But for now, know that we are tickled blue (don't particularly like pink) about the possibility of sending our son off on a field trip, to camp or eventually off into the wide wide world of college and beyond without fear of a life threatening reaction. We encourage you to pray with us as we begin this journey.
Our son, was diagnosed just before his second birthday, with an anaphylactic reaction to peanut protein. That means that anything remotely related to peanuts, or processed in the same factory as peanuts has been off limits to our family for the last decade. We are constantly checking labels and avoiding restaurants that use peanut oil or peanut products in their food.
Double Dave's pizza was taken off the safe list when they introduced Thai pizza. Chili's restaurant was recently added to the list of off limit food establishments when they added a peanut drizzle salad dressing and a peanut butter brownie dessert to the menu. Baskin Robbins is out because of cross contamination in the scoops and don't even mention Chick-Fil-A, They fry everything in peanut oil, or at least did until recently and even if they changed over, how long until they have sufficiently cleaned the peanut residue off of everything. We even had to forgo canned spinach from Walmart because it contained a peanut warning (not a big sacrifice there). Accidental contact has our biggest fear and has in fact sent us racing for the hospital on more than one occasion. I am not complaining, just explaining the reality of life with a peanut allergy.
It really has not been that much of a sacrifice. We learned to read labels, ask questions and stay nearby when he was out of our control. I ate a PB&J sandwich most every day of my life for the first 23 years, giving it up was not a big deal, it was what needed to be done. My wife has missed M&Ms and I miss chocolate covered raisins. Both of which are manufactured in facilities or on equipment that also processes peanuts. Life without peanuts is not nearly as hard as life without two feet. Like with so many other things that are thrown our way in life, we pull back, regroup and move forward.
There have been little issues, school cafeteria serving unsafe food, birthday parties with unsafe cake mixes, Halloween, Easter baskets, etc. But for the most part, we have remained safe within the walls of the little world we have created. Safe, that is until this year when our son expressed a desire to go to high school! Having finished the eighth grade at the top of his class, it seems only logical. But the world of high school is a wide open, scary place where none of the safe guards we have worked so hard to set in place will be. It really feels like we are sending our child swimming with alligators.
And so, you can imagine our delight when, after years of searching, we found a facility less than 500 miles from our house that has successfully desensitized over 40 people with similar peanut sensitivity.
We begin treatment soon and will keep you posted on the progress. But for now, know that we are tickled blue (don't particularly like pink) about the possibility of sending our son off on a field trip, to camp or eventually off into the wide wide world of college and beyond without fear of a life threatening reaction. We encourage you to pray with us as we begin this journey.
Stay tuned...
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