Friday, April 12, 2013

Big changes are a'comin'!

We're doing something gutsy here.  (No pun intended.)

The Background
For a while now, we have been wanting to lift some of Caleb's diet restrictions.  It all started when I realized that he was much more sick after we started treating him for this disease than he was before.  It just wasn't adding up.  I was ready to throw in the towel.  I can honestly tell you that I was watching my son die slowly.  It was a horrid, haunting realization.  But then a miracle happened!  I got strep four times in three months, Russell got a strep diaper rash twice, and Caleb got a strep diaper rash once.  We were on a lot of antibiotics, and I ended up getting my tonsils out so we could stop the vicious strep cycle.  I would literally go a few days past my 10-day dose of antibiotics before I would come down sick again.  And it wasn't just a tickle in my throat.  No, it was full body aches, fevers of 103 degrees, and chills.  I thought I would die.  But the very last time I got strep is when Caleb got his rash.  He went on antibiotics for the third time in his life (the first time was in the NICU and the second time was for his only ear infection when he was 16 months old).  While he was on antibiotics, he stopped throwing up!  And he started eating by mouth!  And he could tolerate a volume increase for the first time since he got his feeding tube!

In case you didn't know, antibiotics tend to speed up your digestive system, which gives most people diarrhea.  But not my kids!  Even Russell ate more and wasn't so bloated while on antibiotics.  Actually, one of the eight meds that we tried to help control Caleb's vomiting over a year ago was erythromyacin (which is an antibiotic) for a condition called "delayed gastric emptying" (DGE).  But it didn't help at all.  It just gave him horrible diarrhea and a terrible diaper rash.  But there's something about amoxacillin that's different.  So I informed the GI doc, who prescribed augmentin for both of the boys.  And Caleb GAINED TWO POUNDS in two months!  Before that he had gone eight months without gaining a thing!  He's still only 25lbs 10.5oz, but that's a major improvement from 23lbs!  So as long as it's helping my boys to eat/grow better, they'll be on augmentin.  It could be a life long thing, which would stink, but it's better than being constantly sick and throwing up and literally starving to death!

The Recent Events
In the last six months, Caleb has trialed seven foods.  That's pretty fast, as far as food trials go.  And most people don't trial seven foods before getting a scope.  Most people trial three or so.  Because if you "fail" a scope (meaning the scope shows eosinophils), then you have to decide which food to pull from his diet.  With seven foods all at once, you wouldn't know which food to blame for causing the eosinophils.

But we just felt like it was the right thing to do for Caleb.  We didn't trial by any method, like some people do.  We just gave Caleb foods that he was curious about.  Oh, you want to try a carrot?  Ok.  Here ya go!
So we kinda coasted for a while, letting Caleb trial gluten/wheat/dairy/egg/nut/practicallyeverything free chocolate chip cookies.  Then the same kind of bread.  Then peas.  And so on.

Then one day Caleb took an ice cream sandwich out of the freezer and insisted that I eat it.  When I insisted that I would not eat it and insisted that Caleb put it back in the freezer, he broke down.  He told me that he wanted to eat it.  So we sat at the kitchen table and I held him and we both cried.  He's finally realizing that he's different and it's not fair.

So I called his GI doctor and requested a scope (his fifth).  I asked her if we could go "top 8 free" if his scope came back clear, and she was fully behind it.  Apparently a large number of people with EGIDs can control their disease with just eliminating some or all of the top 8 most common allergens (dairy, soy, wheat, eggs, peanuts, tree nuts, fish, and shellfish).  I wish I had known that two years ago.  That's my main regret when it comes to Caleb's course of treatment.  I don't regret the feeding tube, not for a second.  I just regret that we limited his food so drastically at the very beginning.  For a lot of people, that's what it takes.  But we didn't need to be in such a rush to take away foods.  I just wanted him to feel better right away, and we were just following doctor's orders.  We have made every decision for him based on our knowledge and what's in his best interest, but we certainly didn't know then what we know now!

Anyway.  He had a scope on the 10th and yesterday we found out that his biopsies were completely clean!  Not one single eosinophil!  For most people that just means a) you get to keep the foods that you recently trialed, and b) you get to trial some more foods and then do another scope and then more trials and then more scopes, etc, etc, etc.  But for us, since the only foods that we know Caleb has reacted to are dairy and soy, we are going to be brave and let Caleb try anything and everything that isn't: diary, eggs, soy, wheat, tree nuts, peanuts, fish, shellfish, and red food dye (because it makes him behave like a monster).  Isn't that crazy?!  The foods that he could eat before were: apples, grapes, peaches, pears, tuna, chicken, white potatoes, sweet potatoes, rice, canola/safflower/sunflower oils, green beans, peas, carrots, chocolate, cinnamon, and tapioca flour.

The Future
So the game plan is to let Caleb eat whatever he wants that is free of the above listed foods, decrease his nighttime tube feeds so as to increase his appetite, and after a few months do another scope.  If he fails the scope...then we'll all be devastated.  We'll know that the choice to increase his foods all at once was a mistake and we'll have to figure out the offending food(s), which could be very, very difficult since he'll be eating such a huge variety of foods.  Worst case scenario, we will have to bring him back to the list of 16 foods that he was on as of two days ago.  That's going to be psychologically very hard on little Caleb.  But, imagine if he passes the scope on his new diet!  Then we will trial each one of the top 8 allergens one at a time and scope after a month or two on each new food.  It's possible that he won't even react to them all.  Imagine that!

Whatever happens, it's nice to have a plan.  The GI doc said she is "at my disposal."  We've still got a long road ahead of us, but at least we're finally not stalled.

And now we get to enjoy watching Caleb eat marshmallows for the first time:

This is what Caleb looks like when he gets a common cold.  This was January.  Unable to stay awake or move.  Unable to keep anything down unless we put him on the feeding pump continuously at about 45ml/hour.
 This is him on the third day of his cold; able to stay awake, but still too weak to move.  Losing weight that he can't afford to lose.  Can you see why I've been scared for his life?

This is "Healthy Caleb," in March.  When he put on his much needed two pounds, his hair grew a ton!  His whole body has been craving better nutrition, obviously!

This is Caleb eosinophil free and eating rice milk ice cream!  We celebrated his clean scope and expanded diet by going to an ice cream place that freezes rice milk (and other milks) with liquid nitrogen!  We brought Caleb's allergen-free chocolate chips for them to mix in, and ordered vanilla flavored rice milk with agave and marshmallows. :)
 He didn't eat much (didn't even touch the marshmallows), but he tasted it a few times.  It was worth it, just to feel like we're "normal" a little bit.  The last time he had ice cream was the day he got his NG feeding tube and went off of all foods.  It was a very emotional experience for me, watching him eat ice cream again!

So even though things are looking up and we're feeling hopeful that this next step will improve the quality of life for Caleb and our whole family, it could still backfire on us, leaving us with more problems than we had last week.  It's a gutsy move, and I'm one to try to play it safe.  I know there are so many people who pray for Caleb, and we've felt the power of your faith uplift us and work miracles on our behalf.  Thank you all so very much!  But please don't forget us now that things seem to be looking up.  We'll try to enjoy this next step in Caleb's course of treatment, but I won't be able to rest easy until his next scope.

5 comments:

Colin Claypool said...

This is so amazing! I cried watching the video. I can't even imagine how you must feel!

emilia. said...

this is so happy! i'm so excited for him and for you guys!

Alice Anne said...

*tears!!!*

Cutest video ever.

I love little Caleb, he's the man.

Eugenia Xie said...

I am so so happy for you guys and happy that Caleb is gaining weight! I discovered the same thing with Perina and her skin. Even when I tried so hard to not eat allergens, she kept getting worse, but then I decided to stop limiting myself and she's just become better and better! How crazy is that?! I've found that if I just avoid preservatives, MSG, and dyes, all is well. I'm glad things are looking up! :) !

Megan said...

This whole post makes my heart so happy! It is gutsy but I think it will be worth it! The video of him eating is the greatest thing in the world! I will pray that this goes the way we all hope it does and that "healthy Caleb" can be a whole lot healthier!