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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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Thursday, January 24, 2013

Meet the Team Part 1

First off let me say, I'm so sorry I've not been updating! I knew it had been a while but didn't realize just how long it had been until today!! I want to blame the holidays, two stomach flus, and just life in general but really I just didn't know what to say or how to say all that has been going on in the last few months.

The holidays were a little sad and stressful but mostly went well. Sad because it was my first with out my Daddy. It sucks missing him so much, and I wish he was still here to see John grow up and encourage me in the hard choices I have to make regarding John's health care. 

John really enjoyed his birthday! We went to Atlanta to help Doug's cousin move and visited for a while with John's Great-Grandparents in Warner Robins. We also made a trip to Lane's Packaging while we were out there.


We flipped John's car seat around too, so now he's forward facing. Such a big boy!!


My Mom came out to visit and we had an early Christmas with her but unfortunately while she was here John and I both got a stomach bug. It hit me way worse than John thankfully, and I was VERY grateful to have my Mom here to help. John was on cloud nine regardless of a stomach bug with all the cars and monster trucks he got for Christmas!

Aunt Amber got a super awesome Radio Flyer wagon for John and he LOVES it!

We went to Warner Robins on Christmas Eve to do presents with Doug's family and then came home. Christmas morning, after John opened his presents, we decided that we needed to go back. Sitting at home alone on Christmas Day just didn't feel right. So we drove back to Warner Robins the next day. Christmas should be about family and being together. 

John had still been having a significant amount of reflux even though we had switched his medication again and gone back to a totally elemental diet. Dr. M decided that maybe John was constipated and that was causing the reflux so we started him on Miralax. Mirilax can take a while to start working and a long time to get the dose correct. So every couple of weeks I would half the dose because John went from having a normal bowel movement every three days to having explosive diarrhea. I lowered the dose from 1 table spoon every day down to half a table spoon every other day and John was still having diarrhea on the days he got the miralax. Nothing on the days he didn't. His bowels were moving so fast though his system that they were full of stomach acid and literally burning his bottom. He developed a pretty nasty infection from that too. Dr. M switched him to Lactulose and we still had the same problems, so I made the call to stop all the stool softeners. John's bottom is finally healed after a round of antibiotic cream. His bowels are improving as well with no medication. He was still having reflux occasionally though, which means something is still not right with him.   
And if that isn't enough, on Friday we went to get his reflux medication refilled and the manufacturer has stopped making it.... AGAIN! Yes, I said again. John has been on this medication since he was two weeks old and this is the second time they've stopped making it with out notice. The first time this happened we were switched to a liquid form that we actually liked better and John did really well on it. No symptoms at all, no reflux, no coughing. Then suddenly there was a national shortage of one of the ingredients in the liquid and we had to switch again. At that time the pills were back on the market so we went back to them after a few other medications that John reacted to. After two months of being back on the pills, they stopped making them again!! So then starts the battle of finding someone who can and will compound the liquid for us the correct way with the safe ingredients and getting a Dr to actually return my call and give us a new prescription. By the time it was all said and done John had been with out medicine for 5 days and I was shocked I had any hair left. I literally cried when I got in the car with his medicine. I was so relived and yet still knew in the back of my mind that there was EVERY possibility that this could happen again next month or in six months. 

This next bit I've been putting off writing about because, honestly, I'm worried about the response I'm going to get. When it all comes down it, everything we do for John is what we feel is what's best for him, and it's my choice to put it all out here for you all to read and judge. I do this so that hopefully I'll help someone else going through this. I do this knowing that there will be negative feed back, there always is, but it doesn't make it any easier to post about something that you are pretty sure is going to upset someone.

We are taking John to another GI Doctor for a second opinion next week.

We really like Dr. M but we aren't sure that he is the right fit for our son and our family. There is a new center in Atlanta called the SEED Center. The South East Eosinophilic Disease Center. Atlanta is about the same distance from us as Greenville but to get to Greenville you have to take all back roads and the drive to Atlanta is all interstate. When we go to Greenville we have to stay in a hotel or the Ronald McDonald house, in Atlanta we have family members we can stay with. Those are some of our reasons for doing this. 
I feel like we are moving painfully slow and that may not change with a different Doctor but I plan to find out. Every Doctor is different and has a different way of approaching and treating EoE, just like every single kid with EoE is different. 
The great thing about the SEED center is that we have an advocate who is making all these appointments for us, setting them all up back to back (as much as possible) and keeping everyone coordinated and on the same page FOR ME! This takes a HUGE burden off of my shoulders and is already helping me stay sane. 
So, John has an appointment on Friday with an allergist (Dr. S), the allergist again on Monday to read the allergy test results, GI (Dr. L) on Monday afternoon, and Psychology (Dr K) on Tuesday to evaluate John for his oral aversion and Autism. I'm excited about meeting John's team and making a plan to move forward. 

I will update again when we get back from Atlanta. 

Thanks for reading!!

3 comments:

  1. never ever feel bad about wanting a second opinion. And a respectable dr, if they found out, would support your decision. Even better is when Dr 1 will answer and work with Dr 2 if doctor 2 has questions about what Dr 1 did. Hurting someones feelings is nothing in comparison to making sure your son is ok.

    Ain't going to lie, I was hoping you were going to say you were coming to Children's in Cincinnati.

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  2. Margie, a second opinion is ALWAYS wise whether you like a doctor or not. You're on a mission. Nothing wrong with getting as many answers as you can. This is your Mommy Intuition kicking your Mommy Self-Doubt's butt. And it is good.

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  3. I don't see any issue with getting a second opinion. Finding the "right" doctor is as much about fitting with your personal approach almost as much as it is about the medicine. I hope that this trip will help you find clarity, whatever that is.

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