As promised here is part 2...
We were given two choices as "treatment plans" for Sy.
The first was to be a part of a clinical trial for a drug that they are experimenting with for EE; not much is known about the long-term side effects hence the clinical trial. The paperwork straight-up said that the purpose of this study was "to test the effects (both good and bad) in subjects with EE." They don't know for sure but it seems like there is about a 50% improvement rate.
The other was to do a radical food elimination diet for Sy. We have to remove the following:
1. gluten (wheat, flour products)
2. soy
3. dairy
4. eggs
5. fish/shellfish
6. nuts
7. oranges
For those of you who read food labels, this stuff is in EVERYTHING! However, we've already removed much of this from his diet already so it shouldn't be too traumatic for him. However, he will have to get used to drinking elemental formula as a milk. Any my boy loves his almond milk!! (We stopped dairy 2 years ago.)
It was a tough decision but it seemed like we could possibly get to the bottom of the problem more through the food elimination. If Sy was much older this would be near impossible to do but we have already cut out many of these foods and he is young enough that I still "control" what he eats.
God just seemed to make it clear that for now, this was the best choice. Neither Jordan nor I had a peace about taking the risk with a 3 year-old to do the clinical trial at this point. Sy would also have to potentially stay on the drug forever or until something else is discovered. Once you stop the drug, the EE returns.
So we fly back to Cinci in 3 months to do another endoscopy. (You have to go back every 3 months regardless of whether you do the clinical trial or food elimination.) If his scope comes back bad, then we will re-consider the clinical trial. If his scope comes back improved, we will take the next 3 months to slowing re-introduce a food (i.e. dairy) and then go back in 3 more months to do another scope to see if his body can handle dairy. Make sense? It's not ideal to have to do all of these scopes, but at this point there isn't any other real "marker" to go by. Unfortunately, these trips to Cincinnati will be costly but these docs are the best and there aren't any EE Centers in the southeast.
Wow! Sorry for the lengthy post but just wanted to let you all know. Thanks again for your prayers and support. And no worries, Sy can still eat raisins!!
Sunday, February 28, 2010
Saturday, February 27, 2010
The Low Down...
Home Sweet Home! It's never felt so good--although I could go for a round 3 of Skyline Chili about now!
So a lot of you are wanting to know what Eosinophilic Esophagitis (EE) is and what does that mean for Sy Sy. Today I will just cover what EE is and tomorrow I'll try post more about our course of action (or treatment plan although I don't like to call it that).
Very briefly:
Eosinophils are a type of white blood cell; they are both good and bad. Our bodies need them to fight infection and they are good depending on where they are found in the body and if they are at the appropriate levels. However, they are NOT typically found in the esophagus--as in not at all, zero, zilch.
After completing another endoscopy, we found that Sy Sy has a ton of them in his esophagus. The eosinophils damage his esophagus and cause severe swelling. Left untreated, it will continue to get worse (which it already has) and will cause stricture (or narrowing). This causes food to get stuck and difficulty with swallowing--all of which can lead to a feeding tube. As it progresses, the damage may be irreversible. It is also tough on his immune system and researchers are now thinking of EE as an autoimmune disorder. EE has also contributed/caused Sy's his insane reflux, allergies and asthma.
As I mentioned in an earlier post, there is no cure but the disease can be managed. It can go into points of remission and then flare up again for no apparent reason. They only discovered EE 11 years ago so the research piece is huge. As of now the treatment pathways are either through diet therapy or drug therapy. The drug therapy is still in clinical trials and has not been approved by the FDA yet.
So there you have in a nutshell!! Stay tuned for what the plans are to help our boy...
So a lot of you are wanting to know what Eosinophilic Esophagitis (EE) is and what does that mean for Sy Sy. Today I will just cover what EE is and tomorrow I'll try post more about our course of action (or treatment plan although I don't like to call it that).
Very briefly:
Eosinophils are a type of white blood cell; they are both good and bad. Our bodies need them to fight infection and they are good depending on where they are found in the body and if they are at the appropriate levels. However, they are NOT typically found in the esophagus--as in not at all, zero, zilch.
After completing another endoscopy, we found that Sy Sy has a ton of them in his esophagus. The eosinophils damage his esophagus and cause severe swelling. Left untreated, it will continue to get worse (which it already has) and will cause stricture (or narrowing). This causes food to get stuck and difficulty with swallowing--all of which can lead to a feeding tube. As it progresses, the damage may be irreversible. It is also tough on his immune system and researchers are now thinking of EE as an autoimmune disorder. EE has also contributed/caused Sy's his insane reflux, allergies and asthma.
As I mentioned in an earlier post, there is no cure but the disease can be managed. It can go into points of remission and then flare up again for no apparent reason. They only discovered EE 11 years ago so the research piece is huge. As of now the treatment pathways are either through diet therapy or drug therapy. The drug therapy is still in clinical trials and has not been approved by the FDA yet.
So there you have in a nutshell!! Stay tuned for what the plans are to help our boy...
Thursday, February 25, 2010
One day to go!
I know it's been a couple of days since I've last posted. The medical team has kept us unbelievably busy this week. Yesterday was a good day of education. Today we arrived at the hospital at 8 a.m. and didn't leave until almost 6 p.m. The day consisted of more fasting & testing (2 hours worth of Sy having to lay completely still) and getting those fun, huge patches removed from his back. Think of it like removing duck tape from your back. He survived it like a trooper!! I have seen such an incredible side of my sweet boy this week.
I can't get into all of details right now because I need to get packing... However, if you have a moment, I would selfishly like to ask for your prayers with making a HUGE decision. I was given two treatment plans to work with and neither is going to be easy. One is riskier because it involves using Sy in clinical trials... The other is making even more radical dietary changes which will be incredibly difficult for him. I need to give my decision by tomorrow morning--not that they are rushing us but b/c we fly out tomorrow afternoon. So I am asking for a Gideon moment. I am willing to do either or anything else for that matter... Regardless, my faith is not in medicine but in our great Creator. So, my fleece is out...
P.S. It is FREEZING here!! Sy has enjoyed the snow but I am so thankful for sunny Florida! Kudos to all of you who live in the cold. Brrrr....
I can't get into all of details right now because I need to get packing... However, if you have a moment, I would selfishly like to ask for your prayers with making a HUGE decision. I was given two treatment plans to work with and neither is going to be easy. One is riskier because it involves using Sy in clinical trials... The other is making even more radical dietary changes which will be incredibly difficult for him. I need to give my decision by tomorrow morning--not that they are rushing us but b/c we fly out tomorrow afternoon. So I am asking for a Gideon moment. I am willing to do either or anything else for that matter... Regardless, my faith is not in medicine but in our great Creator. So, my fleece is out...
P.S. It is FREEZING here!! Sy has enjoyed the snow but I am so thankful for sunny Florida! Kudos to all of you who live in the cold. Brrrr....
Tuesday, February 23, 2010
Survived Day 2
I don't even know where to begin...
Since my last post Sy has been admitted to the hospital, under anesthesia, has had a camera down his throat, biopsies taken, blood drawn, an IV, a tube inserted up his nose and down his throat that had to stay in for 20+ hours all while being hooked up to a computer, 75 scratches (for allergies) on both his arms, 3 huge patches with food chambers placed on his back that have to stay on for 3 days, the nose/throat tube removed (leaving a raw cheek & neck), and has been poked and probed more than you could imagine. He had a few silent tears here and there but through it all has tried to keep smiling. (See the pic on my facebook page. I don't know how to attach it on here yet.)
All of that to say that I am more and more amazed at how God has created children to be so resilient and joyful in the midst of such trials. Even the nurses are shocked as to how well he handles pain and discomfort.
We have received definitive confirmation (once again) that he does have Eosinophilic Esophagitis and was also told today the sad facts that there is no cure and that he cannot grow out of this. We have never defined Sy by his disease and won't start now. However, today was the reality that this will be a "thorn in his side" for the rest of his life. Tomorrow I will have an in-depth education class to learn more about it. Cincinnati Children's is the best of the best in research for EE and I am so thankful to be here. But even more than that, I'm thankful to know that God intricately created Sy Sy just as he is and that nothing is out of His control, care or healing.
Since my last post Sy has been admitted to the hospital, under anesthesia, has had a camera down his throat, biopsies taken, blood drawn, an IV, a tube inserted up his nose and down his throat that had to stay in for 20+ hours all while being hooked up to a computer, 75 scratches (for allergies) on both his arms, 3 huge patches with food chambers placed on his back that have to stay on for 3 days, the nose/throat tube removed (leaving a raw cheek & neck), and has been poked and probed more than you could imagine. He had a few silent tears here and there but through it all has tried to keep smiling. (See the pic on my facebook page. I don't know how to attach it on here yet.)
All of that to say that I am more and more amazed at how God has created children to be so resilient and joyful in the midst of such trials. Even the nurses are shocked as to how well he handles pain and discomfort.
We have received definitive confirmation (once again) that he does have Eosinophilic Esophagitis and was also told today the sad facts that there is no cure and that he cannot grow out of this. We have never defined Sy by his disease and won't start now. However, today was the reality that this will be a "thorn in his side" for the rest of his life. Tomorrow I will have an in-depth education class to learn more about it. Cincinnati Children's is the best of the best in research for EE and I am so thankful to be here. But even more than that, I'm thankful to know that God intricately created Sy Sy just as he is and that nothing is out of His control, care or healing.
Sunday, February 21, 2010
Here at last!!
Well I will spare you all the details of our day... It went well despite a rather comical showing at security, two delays and an almost cancellation at Charlotte, and getting lost numerous times while driving in Cincy (or Cinci, which is it?). We are here safe and that is all that matters.
However, I would like to share what I read today on the airplane... '"Rejoice in the Lord always. I will say it again: Rejoice!" (Phil 4:4). You'll notice that it doesn't end with "... unless you're doing something extremely important." No, it's a command for all of us, and it follows with the charge, "Do not be anxious about anything" (v.6).
WORRY implies that we don't quite trust that God is big enough, powerful enough, or loving enough to take care of what's happening in our lives.
STRESS says that the things we are involved in are important enough to merit our impatience, our lack of grace toward others, or our tight grip of control.
Basically these two behaviors communicate that it's okay to sin and not trust God because the stuff in my life is somehow exceptional. Both worry and stress reek of arrogance. They declare our tendency to forget that we've been forgiven, that our lives here are brief, that we are headed to a place where we won't be lonely, afraid, or hurt ever again, and that in the context of God's strength, our problems are small, indeed... Even though I glimpse God's holiness, I am still dumb enough to forget that life is all about God and not about me and my circumstances at all. (Taken from Crazy Love by Francis Chan.)
Needless to say, if you can imagine my day, this was written for me. Thank you Francis.
However, I would like to share what I read today on the airplane... '"Rejoice in the Lord always. I will say it again: Rejoice!" (Phil 4:4). You'll notice that it doesn't end with "... unless you're doing something extremely important." No, it's a command for all of us, and it follows with the charge, "Do not be anxious about anything" (v.6).
WORRY implies that we don't quite trust that God is big enough, powerful enough, or loving enough to take care of what's happening in our lives.
STRESS says that the things we are involved in are important enough to merit our impatience, our lack of grace toward others, or our tight grip of control.
Basically these two behaviors communicate that it's okay to sin and not trust God because the stuff in my life is somehow exceptional. Both worry and stress reek of arrogance. They declare our tendency to forget that we've been forgiven, that our lives here are brief, that we are headed to a place where we won't be lonely, afraid, or hurt ever again, and that in the context of God's strength, our problems are small, indeed... Even though I glimpse God's holiness, I am still dumb enough to forget that life is all about God and not about me and my circumstances at all. (Taken from Crazy Love by Francis Chan.)
Needless to say, if you can imagine my day, this was written for me. Thank you Francis.
Saturday, February 20, 2010
A 3 a.m. start
The day has finally arrived... The kids and I will be leaving bright and early to fly to Charlotte where we will drop off Sy's sister with Grammy and Paw Paw. After a three hour layover, Sy and I will board again to take on two feet of snow in Cincinnati! Fortunately, when we arrive we will have half a day to enjoy some Skyline Chili before little man has to start fasting for Monday's endoscopy. Here we come!!
Friday, February 19, 2010
On Our Way...
This is our son, Silas. We are leaving warm Orlando, Florida to take him to the frozen weather of Cincinnati, Ohio. There, we will be taking him to Cincinnati Children's Hospital's Center for Eosinophilic Disorders where we hope to get some answers to health problems that have been around since the first day of his life.
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