Diseases still SUCK!!!
The middle of this post has more details regarding Ben's disease and how we have come to today...the end has an update on where we are today.
There are honestly a whole lot of unanswered questions with the decisions we face in choosing what route to take for Ben's future. Dr Furuta (gastroenteralogist), Dr Atkins (allergy) along with a nutritionist work together to determine how to best maintain Ben's overall health profile.
History:
When Ben was just 18 months old, he was a sick boy with failure to thrive. We found that due to his disease and food allergies, he was not and had not been absorbing nutrients as he should have been. His esophagus was swollen with strictures from eosinophil cells that do not belong in the esophagus. These strictures look like coral reefs and keep growing until eventually the esophagus could be shut off. The section of the esophagus could be cut out and the esophagus stretched but this is dangerous because it would cause thinning of the walls and a sharp piece of food could puncture the esophagus causing a life-threatening emergency situation. SOOO... the main way to handle the problem is through diet. It is so much more than "normal food allergies" - in that things that most people might have sensitivities to but be able to tolerate cause more damage for Ben. If food restrictions are not effective, they use steroids to control the cells.
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| I'll save you the disgusting actual pictures but if you do a yahoo image search of what is EoE, there is an image with three shots of the esophogus - we have never seen the "normal' one - but we have seen the likes of both of the other before. |
At this point, Ben's allergy tests are actually looking positive. We left the office a few weeks ago with hope that he would actually be able to introduce most everything back into his diet. They did three different types of tests. As long as there was no allergic reaction in each of the three tests, our expectation was that he would be able to introduce that food back into his diet. The only two items that showed up in any of the three tests was peanut and dairy.
You cannot imagine how elated we were to think he was going to be able to have ALL these food again - soy being the most exciting because it is in everything. In fact a whole new genre of food he has never had would have been possible - Asian - with the introduction of soy!
We had one more hurdle to jump over before we would get to start introducing food - a baseline endoscopy. This would be his 14th endoscopy and because he hadn't been having any significant symptoms and the allergy tests were so positive, this "scope" was just a routine scope in our mind. The thing we had to do to reach the promised land of food :)
The day of the scope, I sat down with Dr Furuta to look over the images. He showed me and I could see a bit of swelling and a few strictures in his esophagus, but honestly his esophagus looked better than I had ever seen it. His stomach and upper lower intestines looked great in the images. We still had to wait for the biopsies to be sent to the lab and hear back about those results.
The scope was on a Monday. On Friday, Dr Furuta called back with the biopsy results and the news that there was swelling in both the esophagus and the stomach. I asked what the eosiniphil count was - 72 and 36 respectively. I was encouraged by the numbers to be honest. 72 was the LOWEST I had ever heard. He's had them in the thousands before. Dr Furuta did not sound as excited as I was. He said he wanted to run more tests to find out what might be causing the swelling in the stomach.
Dr Atkins was out of the country for two more weeks and they work as a team. Dr Furuta said we would wait until he came back to make any further plans.
I was honesty not worried at all.
Ben had an episode of his stomach hurting really badly soon after that essential oils, benadryl, nor tums would touch. (well, the essential oils actually did give relief for 20 minutes at a time) I wanted to ignore his stomach pain as "one incident."
So, when Dr Atkins' nurse, Jenn, called on Friday, I was really shocked to hear that not only were they NOT going to introduce any new foods to Ben's diet but in fact, they wanted to take more out - eggs and dairy OR he could go on steroids (for life).
Current Thoughts/Decisions:
Because this is a follow-up to the last post, I am not going to go into the details of the choice but tell you where we have landed at this point.
Ben does not want to go on steroids. He is not interested in living with the side effects of steroids. So, he, with a good attitude, will be choosing to alter his diet. We do have a meeting (yet to be scheduled) with the Drs before anything actually changes. Ray and I don't understand where they came up with egg and wheat as the choices to remove from his diet. Because Dr Furuta and Dr Atkins are the leading docs in this field, we are choosing to trust their judgement but now without question :)
Specific Prayer Requests:
1. If you could pray for us to ask the right questions that would be great!
2. Also, assuming we change his diet, we know our diet will be altered as well. There is a part of me that is super excited about the changes because the reality is we will be healthier than ever. But I do pray to be able to find recipes/food that Ben will get excited for.
3. The part of me that mourns the most is the fear of relationship. When a diet is restricted, it is intimidating for others to invite you over. I don't want his or our lives with others to be restricted. He can bring his food, but others need to feel comfortable enough to know that he'd rather bring his food than be excluded.
4. Then there are other things like youth group, sports, school, etc in which he will be the kid who has to exclude himself. We know that a year from now all of this will be normal for us and although we will look back at this and know it was BIG then, it will not always be big; in fact, it will just be normal. But I don't want to discount the life change now either.
5. Pray for us to choose to take it moment by moment - one step at a time - to not look too far into the future or for us to be sucked in by the fears of being different.
Our prayer is that this verse we didn't even know we needed to commit to our heart but chose to commit to memory this month as a family would be one that is not just head knowledge but becomes heart living!
That is why,
for CHRIST'S SAKE,
I delight
In Weaknesses
In Insults
In Hardships
In Perscecutions
In Difficulties
FOR WHEN I AM WEAK,
THEN I AM STRONG.
2 Corinthians 12:10
We can only be strong when we know He is our strength. I pray that as we walk through these difficulties, we will choose to delight in Him and be strong!
Ben's Week
This week I have seen Ben press into God and reach for strength that has been amazingly encouraging. He is not looking forward to changes he knows is coming but also has a great attitude. He has had adults and peers reach out to him which has brought much encouragement. Thank you to each an everyone of you who commented on Facebook, this post, sent text messages, called, and grabbed him when you saw him. It has meant A LOT to Ben (and me)!!! Not one name has been missed in his telling me who has showed him care. He has been floored and definitely knows he is loved.
