Hey everyone,
We are just asking for your prayers as we sit and wait to take Sy in for another endoscopy here in Ohio. We have added a few more foods to his diet and we've had a few new symptoms pop up, so we're a little apprehensive. We know that God has taken great care of our little champ and we know without a doubt that He will continue to do so!
Sy just enjoyed his 5th birthday, so we are praying that this will be his year for a breakthrough in his treatment. We are also asking for wisdom as we have many decisions to make after we get the results.
We will let you know how it goes. Thanks for your help in keeping our sweet boy healthy!
Showing posts with label Elimination diet. Show all posts
Showing posts with label Elimination diet. Show all posts
Sunday, July 24, 2011
Tuesday, July 5, 2011
Sy Takes Five!
Well, today is a big day. Sy is turning 5 years old!
It just seems like yesterday when this special little guy entered the world and began taking us all on the adventure of his life. Even though Sy has encountered many obstacles, he continues to shine through every one with a big smile. He blesses our family every day and we are glad to have his attitude and patience around us when it comes to dealing with life's curveballs.
This birthday will be another one without a real cake, pizza, and ice cream, but Sy will still celebrate in full force with his 5 whole foods. Wow, that just hit me. 5 years of being alive and only 1 ingredient for every year. We hope to pick up the pace a little!
So we just wanted to take a minute to say Happy Birthday to our little boy and let you know how special he really is to us...
We love you, Mr. Man! Your smile is contagious and you are an amazing gift from God. We are proud of you and love you more than words can express. Four was a mighty year for you... You got to meet your all-time hero, Norm Duke; you fell in random love with "Ohio Steak;" you spent most of the year solely living off of your "juice boxes;" you became a big brother; and most importantly, you asked Jesus into your heart and began your adventure with Him. What a year! We couldn't ask for more and we can't wait to see what the Big 5 brings!!!
Sunday, February 28, 2010
Looking ahead...
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!!
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!!
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