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Saturday, March 9, 2013

Ohio Trip March 3-7 2013

We always take two days for driving to Akron. I am sure if Jack was typical, it would be possible to make the trip in one LONG day. Jack is not typical so, Mom, Jack and I set off on the first leg of our two day journey for Jack's third visit to Akron Sunday March 3. It is better for Jack to break up the trip into two days. Once you put Jack in his carseat he stays in that position. Can you imagine the discomfort of not being able to sift your weight or even move  any of your body parts for comfort? OUCH is an understatement. We make frequent stops to rub Jack's back and change his diaper. We traveled to Louisville, Ky which is good half way point on day one. Jack traveled really well! We got up Monday morning and traveled the rest of the way to Akron. It was thankfully, uneventful!

When we got to Akron Monday afternoon there was a Winter Storm warning. Mom and I were nervous about the snow. Growing up and always living in the South, neither of us has any experience driving in the winter conditions that plaque the whole state of Ohio. We watched the weather closely. This trip was a two day visit. The first day was an EKG, and a visit with Dr. Cohen. The visit with Dr. Cohen includes bloodwork, review of meds, and what's new with Jack session that includes the good and bad. We have not experienced any side effects from EPI-743. The only thing that has been "bad" is Jack's weight gain. He started the study weighing 46lbs. He now weighs 52 lbs. Weight gain is bound to happen to a growing boy so I really can't say that it is because of EPI-743. Jack's seizure meds are given according to his weight. Jack experienced a weight gain and the usual dose of seizure meds no longer controls the seizures. The increase in seizure frequency and intensity brings on misery for Jack. We are in the process of adjusting the seizure meds for optimum control.
We returned home Thursday evening. All the way home I had been checking Jack's diaper. He remained dry all the way home. I became very concerned when we had been home a little while and Jack still had not voided. I called the doctor on call for advice. While waiting on the call backs, I decided to give Jack a vest treatment. He voided during the treatment. I was so relieved!  The nurse called back and said to take Jack in to Dr. Frizzell the next morning. By the time we got to the Dr. office Jack had not voided since the night before. He had not voided for another 12 hrs. The nurse was preparing Jack for a cath to get a urine sample to check for infection when he decided to finally pee. Jack has never done anything like that before. I have been so worried about this new thing Jack has decided to do that my nerves are a wreck. Just as quickly as he stopped peeing he.started peeing on a regular basis again. I have several theories. 1) He is experiencing increased muscle tone in other parts of his body why not in the muscles that control voids. He may be confused at this new found control. 2) His brain is just not sending the signal to his bladder. Either way it is another symptom of mitochondrial disease that we will watch and treat as needed.  Please consider donating $20 to the Jackson Culley Mito-What 5k. You get an awesome t-shirt out of the deal and help Jack at the same time. The 5k is going to be March 23, 2013 at 8am in Millington, TN. Go to to register.