As promised, here I am to tell you about test results. But oh....it is more than that. It's about not being devastated when things aren't the way you want. And about not falling apart when change knocks at your door. The things that I've been thinking through this week are far from major stuff. It is not life or death....for the most part. It is a minor bump in the road, but it came with no clear cut answer.
On Monday, Ski got the call from the dr with test results and the drs instructions. As soon as he heard them, he said, "You've got to talk to my wife!!"
As expected, peanut, tree nuts, and milk are all far above safe challenge level. It was a little bit surprising that even two nuts he had had low testing to before were now well above the unsafe numbers.
What was a bit unusual was that they told us both egg yolk and egg white are now about 2 times higher than they were before. Not only that, but they now want us to avoid eggs once again. Frankly, I was a bit perturbed. Honestly, I could not understand why they tested it in the first place if I had told them that he had challenged and was now eating them no problem. We asked why. But they said we'd have to speak to the dr and we were welcome to make an appointment to do so. So we did. Only thing is, his first available was at the end of Feb. Oh well...we'd wait.
I was beyond frustrated. What did they mean?!?!?
It used to be that everything was based on test results. But current thinking is that food challenge is the gold standard. Not that you want to do that on a whim, but if someone has passed, then why be concerned?
And then I had to do it. I had to go and try and prove I was right. I turned to my son and asked, "Have you ever had ANY problems ever while eating eggs?"
Sheepishly, he told me....
"They make my mouth itch and burn."
Whaaaaaaat?!?!?!? He had NEVER told me this before. And then I remembered it. About a month after he had begun eating eggs at home, he told me during breakfast, "I don't like eggs anymore." And then, I ashamedly recalled how I had scorned the idea and told him he should just eat them. Talk about a moment when you realize that you're a terrible parent!! I wanted to crawl into a hole.
When he was an infant, he did something my other kids had never done. He memorized what his food looked like. He often refused foods as well. Later I learned that his food refusals were strongly associated with his allergens. He never ate yogurt. He never ate eggs. We had a terrible time feeding him. We thought he was fussy. Or picky. But several months after we removed these allergens from his diet, we were surprised to discover that he LOVED to eat. And so he learned that he could trust me and I learned that if he refused a food, to listen. This became very clear to me when I had been trying goat cheese with him and he suddenly stopped eating it. I didn't listen. I still gave him that goat milk and while it was one of the worst experiences I've ever had, I learned a great deal from it.
So...whether it was because I ignored his concerns about the egg or the fact that he has OAS (oral allergy syndrome) and chalked it up to something like that, he never told me that the eggs were bothering him.
Now I was between a rock and a hard place.
Test results trump reaction.
But is this reaction?
So for the past week, I have been thinking, praying, asking, and researching.
And I've come to the following conclusions:
1) It is not normal to have itching and burning in your mouth after eating something.
2) With OAS it is extremely rare to ever have an anaphylactic reaction to the food. I think it is less than 1%. But food allergies are notoriously unpredictable. After years of only having mild oral reactions walnuts, I had full body itching after eating a desert with some in it. No, it wasn't anaphylactic, but it wasn't predictable. And in the past, Iz was a full bucket guy. He'd have minor reactions here and there and finally reached a threshold where he had anaphylaxsis. Now, I am not expecting that with egg, but it seems prudent to give it up.
2) After searching quite a bit, I did run across information showing that yes, you should do levels after reintroduction and yes, apparently re-sensitization can happen.
3)We can still do baked egg so our challenge has not been completely in vain. In fact some doctors advise their patients who appear to outgrow, but test out of range to only eat baked egg for a period of time and then later add in eggs. Baking without eggs is the most yucky part of being a mom to an egg allergic kid IMHO.
4)Frankly, he is not a huge fan of eggy eggs and is completely willing and happy to give them up.
5)We're completely going to let Iz lead us in this area. If something causes him a problem, we're not going to do it.
6)We're still hopeful and optimistic that complete inclusion is around the corner. We just need a bit more patience.
So for now...no eggs, quiche, custard, french toast or mayo.....or any other eggy things. It makes it harder for breakfast...esp Wed when we have co-op and I give the quick and easy protein for breakfast. But I've got ideas already!!
And I am not falling apart. I was completely confused, but I think the more I learned, the more I came to understand the wisdom in taking a step back. If we were talking about complete avoidance, I'd be having a harder time. But I think the baked egg inclusion is a happy medium.
Friday, January 20, 2012
Thursday, January 12, 2012
End of an Era.....Beginning of a New One
Ski and I have been thinking for a long time about transferring the care of Iz to a local doctor. A little history first...
Isaac began his journey with life threatening food allergies shortly after his first birthday. It was the now infamous trip to the zoo that lead us to seek out an allergist. We went to one and came out with a list of 10 foods to avoid and a bit of paperwork. However, I was soon to discover that the allergist neglected to educate me on the use of epipens and that some of his paperwork had erroneous information on it....like giving goat milk for a milk allergy. When my son wandered a bit too close to death because of the poor care from this doctor, we decided to find a pediatric allergist. At the time, there were only two pediatric allergists listed on our insurance plan. One was in Columbia, SC and the other was in Durham, NC. We picked Durham and the rest was history.
Shortly after we started going there, we learned that this Dr. Burks we had chosen had something of a reputation. He had come there from Arkansas and rubbed elbows with the likes of Dr. Hugh Sampson. After a few year, he began appearing regularly on national news and they began conducting studies in peanut, milk, and egg allergies. The peanut study is the most well known, but the other studies are just as successful. They have a long way to go, but things are looking promising. I personally know a lady whose son is in the peanut study and has been from the beginning. It is exciting stuff!! Not only is it exciting, but it also means that people are flocking to Duke in droves. So the long wait for appointments and the long nearly 8 years of driving, deciding whether to stay overnight or do it all in a day, and the loooooong appointments were looking less and less appealing. I also disliked a "non-local" doctor who I felt I couldn't call at any moment. And finally, every visit not only constituted the physician fee and testing, but also a facilities fee.
So after much discussion, and especially after regaining beef which meant it was no longer necessary to ship blood samples to the Mayo Clinic for RAST, we came to the equally sad and happy decision of "going local." As if to seal the deal for us, I learned right after our decision to leave, that Dr Burks took a position of Department head at UNC Chapel Hill. So it seemed we would have had to make a decision either way.
Today was our initial appointment with the dr who I have been seeing for 2yrs for allergies. I began going there after I heard another dr in the practice speak on asthma at a food allergy support group. Not only did I realize that I had more than exercise induced asthma, I saw that this lady really knew her stuff!! I love my current doctor there and he's helped me tremendously. You can tell he really loves what he does and he wants his patients to know about their condition, why he is giving them medications, and how to improve their lives. Plus he is SUPER smart and allergic to cats, too.
After 3 hrs of skin tests, blood tests, breathing tests, and conversation, we came out with a handful of information that I basically knew, but had a clearer picture on.
Isaac is basically very allergic to everything indoors...cats, dust, dust mites...
and everything outdoors....every tree and grass they tested and two out of six weeds.
He's not allergic to molds so he can roll in the leaves all he wants.
He tests positive to soy, but that's most likely due to all of the grass allergies.
He's highly reactive to all nuts....except for the two that I'm allergic to. Go figure.
He's highly reactive to milk
He's highly reactive to peanut
Strangely, he is still quite reactive on skin test to egg, but we knew that already. He tested low on RAST so we challenged and he's been eating it for almost a year.
Sweet potato? I forgot it. Totally slipped my mind. I didn't even think about bringing it.
We dropped a medication.
We kept most of them.
We added one -- magic nose spray.
I knew Spring was a bad season, but we'd have flares Spring through Fall so this explains a lot.
We're waiting for blood tests for milk, peanut, tree nuts, but the dr didn't think they would be much improved from our last RAST tests which means he will still be nowhere near challenge level for those foods. I'll try to remember to blog when those come back. But we're not looking for anything amazing.
At this point, I'm ready to chuck everything in my house, rip out the nasty carpet and start again. But unless I am ready to live on concrete and builder board, I need to have some restraint. So little steps......
Isaac began his journey with life threatening food allergies shortly after his first birthday. It was the now infamous trip to the zoo that lead us to seek out an allergist. We went to one and came out with a list of 10 foods to avoid and a bit of paperwork. However, I was soon to discover that the allergist neglected to educate me on the use of epipens and that some of his paperwork had erroneous information on it....like giving goat milk for a milk allergy. When my son wandered a bit too close to death because of the poor care from this doctor, we decided to find a pediatric allergist. At the time, there were only two pediatric allergists listed on our insurance plan. One was in Columbia, SC and the other was in Durham, NC. We picked Durham and the rest was history.
Shortly after we started going there, we learned that this Dr. Burks we had chosen had something of a reputation. He had come there from Arkansas and rubbed elbows with the likes of Dr. Hugh Sampson. After a few year, he began appearing regularly on national news and they began conducting studies in peanut, milk, and egg allergies. The peanut study is the most well known, but the other studies are just as successful. They have a long way to go, but things are looking promising. I personally know a lady whose son is in the peanut study and has been from the beginning. It is exciting stuff!! Not only is it exciting, but it also means that people are flocking to Duke in droves. So the long wait for appointments and the long nearly 8 years of driving, deciding whether to stay overnight or do it all in a day, and the loooooong appointments were looking less and less appealing. I also disliked a "non-local" doctor who I felt I couldn't call at any moment. And finally, every visit not only constituted the physician fee and testing, but also a facilities fee.
So after much discussion, and especially after regaining beef which meant it was no longer necessary to ship blood samples to the Mayo Clinic for RAST, we came to the equally sad and happy decision of "going local." As if to seal the deal for us, I learned right after our decision to leave, that Dr Burks took a position of Department head at UNC Chapel Hill. So it seemed we would have had to make a decision either way.
Today was our initial appointment with the dr who I have been seeing for 2yrs for allergies. I began going there after I heard another dr in the practice speak on asthma at a food allergy support group. Not only did I realize that I had more than exercise induced asthma, I saw that this lady really knew her stuff!! I love my current doctor there and he's helped me tremendously. You can tell he really loves what he does and he wants his patients to know about their condition, why he is giving them medications, and how to improve their lives. Plus he is SUPER smart and allergic to cats, too.
After 3 hrs of skin tests, blood tests, breathing tests, and conversation, we came out with a handful of information that I basically knew, but had a clearer picture on.
Isaac is basically very allergic to everything indoors...cats, dust, dust mites...
and everything outdoors....every tree and grass they tested and two out of six weeds.
He's not allergic to molds so he can roll in the leaves all he wants.
He tests positive to soy, but that's most likely due to all of the grass allergies.
He's highly reactive to all nuts....except for the two that I'm allergic to. Go figure.
He's highly reactive to milk
He's highly reactive to peanut
Strangely, he is still quite reactive on skin test to egg, but we knew that already. He tested low on RAST so we challenged and he's been eating it for almost a year.
Sweet potato? I forgot it. Totally slipped my mind. I didn't even think about bringing it.
We dropped a medication.
We kept most of them.
We added one -- magic nose spray.
I knew Spring was a bad season, but we'd have flares Spring through Fall so this explains a lot.
We're waiting for blood tests for milk, peanut, tree nuts, but the dr didn't think they would be much improved from our last RAST tests which means he will still be nowhere near challenge level for those foods. I'll try to remember to blog when those come back. But we're not looking for anything amazing.
At this point, I'm ready to chuck everything in my house, rip out the nasty carpet and start again. But unless I am ready to live on concrete and builder board, I need to have some restraint. So little steps......
Monday, January 9, 2012
What Keeps me from Walking by Faith
I've got to tell you that today did not work out as I had planned. And it is in great part my fault!!
I don't wear a watch. I have a good excuse. Really I do. But because I've had a metal allergy for most of my life, I've lived my entire life almost without clocks. I don't wake up early. First....I am a nightowl. In addition, I think 2 yrs of 2nd shift work and perhaps that week in college when I didn't sleep at all have done a serious number on my Circadian rhythms. I'm working on that!! Honestly, I am. One of my Christmas presents is supposed to help me with that. I just need to give it time and I haven't started on it yet.
Thirdly, I am blessed to have an incredible husband who writes EVERYTHING down. A friend affectionately called him "Calendar Man." I seriously think I drive him crazy with my impromptu life. But I must confess that he is my stability...which (shhhhh don't tell) I honestly do need. BUT and this is a HUGE but....it doesn't work if I don't tell him. And that's what happened this morning.
I completely missed a drs appointment. I remembered it last week. And when I woke an hour after I was supposed to be there, I remembered it this morning. And this is going to cost me. Not just in time...but money. And I have a hard time with that. When I go shopping for groceries on a Tuesday, I try to never look at the new ads which come out on Wednesday. Why? Because I will chastise myself no end for buying something at a price of no more than 1¢ different. Yes...I have a real problem. So to discover because of my own fault that I will be costing myself a good sized chunk of change just for missing an appointment was hard for me to handle. I cried. And all day I've been thinking about it.
And then I sat down to read my email.....
Not one, but two emails regarding "suspicious" activity in the area. Oh boy. And with the news these days. There are so many desperate people.
So when my doorbell rang...I didn't answer.
And when it rang again....I didn't move.
But my husband come downstairs and opened the door. My curiosity led me to the hall....and then down the hall....and pretty soon I was moved to action. More on that later....
In those moments, God convicted me of how my entire morning was part of His plan and how I was walking not by faith, but by my own self.
I hear so many stories these days of how this or that group of people is out to get me. What will happen if this person is elected or if this country fails or if this doesn't happen. Trust no one. Believe no one. You've seen it. You know what I'm talking about. And I wonder....where is Faith in all of this? Doesn't the bible tell us that God controls the leaders of governments? Ok...there is prudence in using tools that we have to make choices. There is prudence in preparing and planning. But what if your plan fails? Men, governments and this world WILL fail you. Your spouse will fail you. Your boss will fail you. Your kids or your parents will fail you. Your bank account or your savings will fail you. Your health will fail you. This is why God tells us to put our hopes in Him. Because He will never fail you. Plan as you hard as you can and the unexpected will still happen!! What then? I'd challenge you to think hard about that. When the unexpected happened to you last, and you felt sorrowful or hurt or angry why was it?
For me...when I completely forgot about the appointment I had last night and God brought it immediately to my mind the moment I opened my eyes, my first thought was about money. Where is my faith? I've known for a long time that it often lies in my finances. It has been a long fought battle and while I've made strides, these tiny events in my life are glaring reminders that the trust still oftentimes lies there. I am as tight as they come. My mother who was raised in the Depression and saves everything and rarely spends superfluously told me I was tighter than she was when we were out shopping. She urges me to spend money because she knows I do not. It is not an admirable quality in my life because it is borne out of fear because I often place my trust in financial stability.
And then there's those emails. I don't fall victim to fear mongering often, but I've thought recently about the renewed copper thefts and how, "Boy....that would be pricey to repair!! We don't have the money for that." I spent a restless night not long ago praying and laying that all in God's hands. But these emails this morning....it was closer to home than the news I'd heard before. And once again...it was all about money. So when I didn't answer my door, I was trusting once again in financial stability.
But here's what I would have missed!!! An opportunity!!!
We have neighbors across the way who are the sweetest Christian couple. We've talked often. They are wonderful people!! I am not sure if their grown kids know the Lord or not. The husband's 20-something daughter lives with them and was heading off to work. But she couldn't start her car. Her dad's a truck driver and he was on a trip, but his car was down the road....a loooooong walk. She only wanted a ride to the store to pick up his car. On the way, I learned she works two jobs. She graduated with a degree in marketing and couldn't find work for a long time. She works for an insurance company and a clothing retailer. She said her friends have had a hard time finding work, too. She really likes her jobs and I am so glad I had the chance to talk with her and serve her. She wanted to pay me when she gets home tonight. I told her no and I insisted. Besides, I said....we run off to the store often and it wasn't a big deal for me to do it. But I am sure it was a HUGE deal to her. It is hard to keep a job now when there are so many people looking. I'm sure being late to work was weighing heavy on her mind.
So...I thought I'd write this post. Because I was thinking on the way home about a few things.
When I place my trust something other than God, it does a few things, I think.
It distracts me from what He wants me to do. If I obsess on my fears, I can tend to be focusing so hard on them, I neglect the things around me that God has for me to do. I can be thinking about stuff I want to get done and miss what God has for me to do.
It causes me to be self focused. Instead of thinking about how God may have protected me this morning from a costly accident or how there might have been some other purpose He had for me to forget my appointment, I wallowed in self pity. I thought about how much I had screwed up.
It makes God small. God is not small. And if you want to argue that point, go read Job.
We can waste so much life focusing on the wrong things and overlooking the real life, service and joy that God has for us in between. Christianity is laying down our lives for others as Christ gave us the example to do. It isn't hiding in my house. It isn't being afraid to speak. It isn't putting my trust in the wrong place. It isn't thinking that if I do x and y all my plans will work out the way I want. All of this reminded me of David Wilkerson and Elizabeth Elliot who stepped out in faith into situations that were dangerous because they knew God called them. And they stayed because of a genuine love they had for the lost. Anyone can do good -- Christian or not. But the good that we do comes from the abundance that is in our heart. Not to get. Not to look good. Not to be honored. It is the good that speaks to those in need who long for love and acceptance when the world and the people around them have failed them. Whether I preach the Gospel to you in words or not, my actions should speak to you more loudly.
I'd like to end with this wonderful quote from Nicky Cruz that inspires me to be more Christlike not simply in what I say, but what I do. For those who don't know, Nicky was a leader of the Mau Mau gang in Brooklyn who was converted through David Wilkerson in 1958
May my actions reflect the truth of scripture to the fallen world around me!!!
I don't wear a watch. I have a good excuse. Really I do. But because I've had a metal allergy for most of my life, I've lived my entire life almost without clocks. I don't wake up early. First....I am a nightowl. In addition, I think 2 yrs of 2nd shift work and perhaps that week in college when I didn't sleep at all have done a serious number on my Circadian rhythms. I'm working on that!! Honestly, I am. One of my Christmas presents is supposed to help me with that. I just need to give it time and I haven't started on it yet.
Thirdly, I am blessed to have an incredible husband who writes EVERYTHING down. A friend affectionately called him "Calendar Man." I seriously think I drive him crazy with my impromptu life. But I must confess that he is my stability...which (shhhhh don't tell) I honestly do need. BUT and this is a HUGE but....it doesn't work if I don't tell him. And that's what happened this morning.
I completely missed a drs appointment. I remembered it last week. And when I woke an hour after I was supposed to be there, I remembered it this morning. And this is going to cost me. Not just in time...but money. And I have a hard time with that. When I go shopping for groceries on a Tuesday, I try to never look at the new ads which come out on Wednesday. Why? Because I will chastise myself no end for buying something at a price of no more than 1¢ different. Yes...I have a real problem. So to discover because of my own fault that I will be costing myself a good sized chunk of change just for missing an appointment was hard for me to handle. I cried. And all day I've been thinking about it.
And then I sat down to read my email.....
Not one, but two emails regarding "suspicious" activity in the area. Oh boy. And with the news these days. There are so many desperate people.
So when my doorbell rang...I didn't answer.
And when it rang again....I didn't move.
But my husband come downstairs and opened the door. My curiosity led me to the hall....and then down the hall....and pretty soon I was moved to action. More on that later....
In those moments, God convicted me of how my entire morning was part of His plan and how I was walking not by faith, but by my own self.
I hear so many stories these days of how this or that group of people is out to get me. What will happen if this person is elected or if this country fails or if this doesn't happen. Trust no one. Believe no one. You've seen it. You know what I'm talking about. And I wonder....where is Faith in all of this? Doesn't the bible tell us that God controls the leaders of governments? Ok...there is prudence in using tools that we have to make choices. There is prudence in preparing and planning. But what if your plan fails? Men, governments and this world WILL fail you. Your spouse will fail you. Your boss will fail you. Your kids or your parents will fail you. Your bank account or your savings will fail you. Your health will fail you. This is why God tells us to put our hopes in Him. Because He will never fail you. Plan as you hard as you can and the unexpected will still happen!! What then? I'd challenge you to think hard about that. When the unexpected happened to you last, and you felt sorrowful or hurt or angry why was it?
For me...when I completely forgot about the appointment I had last night and God brought it immediately to my mind the moment I opened my eyes, my first thought was about money. Where is my faith? I've known for a long time that it often lies in my finances. It has been a long fought battle and while I've made strides, these tiny events in my life are glaring reminders that the trust still oftentimes lies there. I am as tight as they come. My mother who was raised in the Depression and saves everything and rarely spends superfluously told me I was tighter than she was when we were out shopping. She urges me to spend money because she knows I do not. It is not an admirable quality in my life because it is borne out of fear because I often place my trust in financial stability.
And then there's those emails. I don't fall victim to fear mongering often, but I've thought recently about the renewed copper thefts and how, "Boy....that would be pricey to repair!! We don't have the money for that." I spent a restless night not long ago praying and laying that all in God's hands. But these emails this morning....it was closer to home than the news I'd heard before. And once again...it was all about money. So when I didn't answer my door, I was trusting once again in financial stability.
But here's what I would have missed!!! An opportunity!!!
We have neighbors across the way who are the sweetest Christian couple. We've talked often. They are wonderful people!! I am not sure if their grown kids know the Lord or not. The husband's 20-something daughter lives with them and was heading off to work. But she couldn't start her car. Her dad's a truck driver and he was on a trip, but his car was down the road....a loooooong walk. She only wanted a ride to the store to pick up his car. On the way, I learned she works two jobs. She graduated with a degree in marketing and couldn't find work for a long time. She works for an insurance company and a clothing retailer. She said her friends have had a hard time finding work, too. She really likes her jobs and I am so glad I had the chance to talk with her and serve her. She wanted to pay me when she gets home tonight. I told her no and I insisted. Besides, I said....we run off to the store often and it wasn't a big deal for me to do it. But I am sure it was a HUGE deal to her. It is hard to keep a job now when there are so many people looking. I'm sure being late to work was weighing heavy on her mind.
So...I thought I'd write this post. Because I was thinking on the way home about a few things.
When I place my trust something other than God, it does a few things, I think.
It distracts me from what He wants me to do. If I obsess on my fears, I can tend to be focusing so hard on them, I neglect the things around me that God has for me to do. I can be thinking about stuff I want to get done and miss what God has for me to do.
It causes me to be self focused. Instead of thinking about how God may have protected me this morning from a costly accident or how there might have been some other purpose He had for me to forget my appointment, I wallowed in self pity. I thought about how much I had screwed up.
It makes God small. God is not small. And if you want to argue that point, go read Job.
We can waste so much life focusing on the wrong things and overlooking the real life, service and joy that God has for us in between. Christianity is laying down our lives for others as Christ gave us the example to do. It isn't hiding in my house. It isn't being afraid to speak. It isn't putting my trust in the wrong place. It isn't thinking that if I do x and y all my plans will work out the way I want. All of this reminded me of David Wilkerson and Elizabeth Elliot who stepped out in faith into situations that were dangerous because they knew God called them. And they stayed because of a genuine love they had for the lost. Anyone can do good -- Christian or not. But the good that we do comes from the abundance that is in our heart. Not to get. Not to look good. Not to be honored. It is the good that speaks to those in need who long for love and acceptance when the world and the people around them have failed them. Whether I preach the Gospel to you in words or not, my actions should speak to you more loudly.
I'd like to end with this wonderful quote from Nicky Cruz that inspires me to be more Christlike not simply in what I say, but what I do. For those who don't know, Nicky was a leader of the Mau Mau gang in Brooklyn who was converted through David Wilkerson in 1958
Two precious things that fascinate me about Christ: That he had active eyes, and always was there, looking at the needs of the people.
May my actions reflect the truth of scripture to the fallen world around me!!!
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