Wednesday, December 1, 2010

Update on Wade’s health

Tomorrow Wade is scheduled to have a second endoscopy performed.  I wanted to quickly post this on the blog, with the hope that some of you might pray for him and us during this time. 

{If you want to skip ahead to the end of this lengthy post to see how you can pray, scroll to the bottom and read what’s in bold.}

I believe I’ve talked about Wade’s allergies on the blog before, but as a recap, here is where things currently stand:

Wade was diagnosed with Eosinophilic Esophagitis (EE) right before he turned one.  A relatively newer diagnosis, EE is basically defined by the presence of a high number of white blood cells, or eosinophils, on the esophagus.  It’s believed that food allergies play a part in contributing to this condition.  For many people the symptoms include pain while eating/gagging, vomiting, food impaction, etc.  Wade’s only presenting symptoms were that he was classified as “failure to thrive” (how I hate that term!) based on his weight, and that he always had a terrible time getting to sleep (much crying that really never went away until he was 18 months old and we’d made some dietary changes at that point).   He received the diagnosis after having an endoscopy and biopsy performed on his esophagus.

We initially tried removing only the few foods that registered as clear allergens on a traditional allergy skin test (in Wade’s case, eggs and nuts), as well as pharmaceutical treatment (liquid pulmicort, a steroid=yuck).  We never saw any changes in Wade’s appetite/weight percentile, so after seeking out new doctors we had another skin test done about a year later, as well as another kind of allergy testing, patch testing, performed.  Patch testing is not fool-proof, but it is designed to recognize foods that may cause a delayed allergic reaction.  The tricky part about EE is that the offending foods are often those that were consumed up to 72 hours before the reaction/problem occurs. 

Here’s a picture of my sweet little guy with his patches on.  We had to leave these on for three days, so they could read them for a delayed reaction. 

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Based on the skin and patch testing, we removed about twenty different foods from Wade’s diet, beginning about two months ago.   As I’ve mentioned before, we’re hopeful that there aren’t in fact twenty foods that are contributing to his EE, but we had to start by eliminating anything that registered as a potential allergen on either of the two tests.  Obviously, this whole game of figuring out the offending foods would probably be a good bit easier to navigate if we were dealing with an adult or even a child who could communicate to you what and when foods were bothering him. 

So this brings us to tomorrow.  The standard of care for people with EE is that they have two endoscopies performed each year, as this procedure is the only way to determine what is happening on the esophagus.  The best case scenario is that all the eosinophils on Wade’s esophagus are gone tomorrow, at which point we could begin to slowly add back some of the foods we’ve removed into his diet.  It’s also very possible that his eosinophil count has not changed significantly enough, in which case we would need to consider removing additional foods from his diet and/or adding medication (he is currently not on any). 

I really don’t know what to expect in terms of an outcome tomorrow.  I’m really not holding my breath for the best news.  In some ways it’s hard to imagine that Wade experiences that much discomfort as he’s generally a really happy, fun kid.  At the same time, we know that left untreated, EE can have long-term deleterious effects on the esophagus.  Through all of this, I’ve been learning to trust God, to trust that He is the one who loves Wade best and that He knows what Wade needs.  I believe that God is sovereign, that He is good, and that He loves Wade.  I have to keep telling myself that this good news  is enough.  Not a clean bill from the GI specialist tomorrow.   While we would rejoice over such news,  I will truly rejoice because the God of the universe has not left us to figure all of this out on our own, but has gone before us and promised to never leave or forsake us because of Christ.  Pardon the preaching…to be honest, I need to preach this good news to myself so I don’t get caught up in the temptation to worry and be filled with anxiety over all of this!

If you’re still with me (!), and you’re inclined to pray and ask God to be at work in this situation, here is how you can pray:

*Pray that Wade would sleep well tonight in the hotel (we’re traveling to Norfolk, VA for the procedure).

*Pray that God would take away his hunger pains before the procedure tomorrow (He can’t eat anything after midnight tonight, and the procedure isn’t until 10 am).

*Pray that God would calm Wade’s spirit as he is taken away from us and into the room for the surgery (he’s been exhibiting major “white coat syndrome” here recently).  Pray that he would know he is safe and loved.

*Pray that God would protect him and keep him safe while he is under anesthesia during the endoscopy.

*Pray for the GI doctor (her name is Dr. Willis) who will do the procedure. 

*Pray for God to heal Wade of his allergies!!

*Pray for us as we receive the news of the results in the days that follow.  Pray that we’d be filled with peace, trust, and hope in our God and his plans for our family. 

And I know you all really just want to see pictures of my kids, so here are a few of them together.  Wade adores his little sister, and we are so thankful for this!

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3 comments:

  1. praying for Jesus to remind you He is for you, Wade, and your family! keep us posted! that last picture is PRECIOUS!!

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  2. Anne,
    Hi!! I just wanted to let you know that I just took a job as a Physician Assistant in Allergy and Immunology at Children's National Medical Center in DC. We specialize in pediatric allergic rhinitis, asthma, EE and food allergies, and I work everyday with kids who are going through exactly what Wade is going through....and I know that it is SO tough! Not just on the kids, but on their families too. I will be praying for you guys tomorrow! Lots of love!!

    xoxo,
    Lina

    p.s. Holland is gorgeous! :)

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  3. I meant to call you... I was thinking of you on the 2nd. Any news???

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