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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Wednesday, August 29, 2012

no news...

.... is good news right?
I have a little bad but mostly good news so I guess it can be.

I left you last time with John doing a round of steroids to knock out the flare up that was caused by the apple trial. We did Prednisone for a week. This was our first time on Prednisone. Our old GI used Pulmicort for 15 days. Dr. M prefers Prednisone because it works faster so the less than desirable side effects are shortened but the side effects are so different!! We had very few if any side effects the two times we used Pulmicort. The biggest one with that one, we didn't even experience, is thrush. It was a pain trying to wash out his mouth every time we have him the medication, four times a day, (another pain), but it kept him from getting thrush. It was also harsh on his body being 15 days. Steroids stunt growth while you're on them.
But with Prednisone, there are horrible behavioral, mental, and physical side effects.
John was aggressive, sensitive to things like clothes and his diaper, and irritable. He was clenching his jaw and grinding his teeth. Pulling on his clothes and diaper and taking them off whenever he could. Throwing himself on the floor and flailing around. Throwing things at me, at my face. Hitting, pushing. Generally, just unhappy. He seemed to be so tense. It broke my heart to see him that way.
 The side effects last long after you stop taking the drug too. John was not 100% back to his normal self for nearly three weeks.

He is also still having some vomiting issues. They seem to be random and I cannot figure out if they are related to EoE, or his sinuses, or he just ate too fast or too much! So we are still putting off the sweet potato trial. I'm seriously considering not doing food trials at all, until he can request them himself. It seems to put his little body though more stress than it's worth, and it's putting a lot of stress on his father and myself for sure! It's so hard to decide what's best for your child when both options have a very large potential to make your child very sick. IF we were to go that route, of delaying food trials, he would more than likely end up with a feeding tube. We really need to find two dozen safe foods for him to thrive with out a feeding tube, or get him drinking a lot more of this formula every day.
He may end up with a feeding tube anyway!!! This formula does NOT taste good and it's really hard for older kids and adults to drink enough of it to sustain them everyday. I know I wouldn't be able to do it.
Another problem that we have with failed food trials, besides the vomiting, and the scopes, and the steroids, is that John stops eating for weeks when he's having a flare and it takes him a long time to get back up to the minimum amount he's required to drink to continue to grow. We still are not back to that point since the apple trial.

One thing we are working on with the therapist is getting him to eat shaved ice and his formula frozen and made into "ice cream". So far we are up to 2-10 bites per sitting. All of this is preparing him for his next food trial. The less stress that is involved in a food trial the better. So we can know for sure what's an EoE flare, or allergic reaction, and what is just reflux/stress/oral aversion, causing his body to reject the food.

We have a lot to think about, talk about, consult about.

John just turned 20 months on the 15th. He weighs less than 20 pounds.
He is still the happiest baby you'll ever meet and is progressing in therapy by leaps and bounds!
He has over 20 words, is starting to put two together.
He counts! It's adorable!
He is running, kicking balls, walking backwards, climbing on everything, and always on the move!
He sleeps amazingly! 10-12 hours a night and 1-3 during the day. He loves sleep as much has his parents.
He surprises me every day. He makes us laugh all the time.
He keeps me on my toes and I love him more and more every day. I would not change a thing about him or trade him for 5 healthy kids!

Here is a little flash back. John over the last 20 months. :)

So much has changed in 20 very short months!!!

*Edit 8-29 9:50am*
We also have a follow up appointment with the developmental pediatrician tomorrow. We will see what she has to say about John's improvements and find out if she still thinks he has autism. -M

1 comment:

  1. Trials are just so hard with the little ones because so many of the subtle signs of a fail are also normal young child behaviors! My son just turned three and they are still tricky.