Zipporrah's Mayo trip update

[Guest guest]

We had a very busy week at Mayo and come away with good and bad reports. First, the biggest reason we went was for help concerning GI issues. Unfortunately, we found out too late that we chose wrongly in which doctor to see. Due to many cancellations we were offered an earlier appointment with Dr. Freese rather than the planned visit with Dr. El-Youseff. We thought it would be good to go to the earlier one so they could schedule the tests needed for Tuesday or Wednesday easier. Boy did we make a mistake!!! We found out after seeing the doctor that she was the one that chose to not allow Asenath to get the already scheduled G-tube placement last year. When we were in the hospital she didn't feel Asenath was bad enough to need one. Then when we returned to Iowa and became sick within a couple weeks after then, she had to receive a NG-tube (for 5 weeks) due to extreme malnutrition test results! Needless to say, Mayo later did place the G-tube, but Asenath had to endure the NG-tube replacements several times by that time and all that comes with that issue. Anyway, back to Zipporrah and this visit: We saw a Senior Resident who was very kind and took us very serious who was really listening to us and then Dr. Freese came in, looked at Porrah for a whole 5 seconds before stating that she looked fine to her. Even after talking to her about ALL that Porrah has been through and what Dr. Whiteman and the therapists wanted she still didn't think anything was necessary. She reluctantly scheduled an upper GI and told us she was ordering a swallow study as precaution as well. Then, when we went to the appointment on Tuesday morning, they DID NOT do a swallow study and said it wasn't ordered! We were quite peeved as this was what we needed most. We spoke with Dr. Freese's secretary about it and about the prescription the doctor said she would automatically give Porrah only to hear she had changed her mind!!! No meds given. We were just sent home to endure the vomiting, gagging, and swallowing problems on our own. Yes, I was quite upset! Thankfully, the good news was there were not structural abnormalities but we really needed to know how she was swallowing and if the stroke episode damaged anything pertaining to it. On the good note, Dr. Whiteman, as usual, was great. He went over the labs and really feels Mito is the problem and started her on Carnitor and COQ10. He hopes this will help her to keep her metabolics stable. Her lactic acid was back down again and he was pleased to see that. He does feel they were truly elevated and probably had a lot to due with the stroke episode she had. He said when she is older and stronger he would probably want to do a skin biopsy. We agreed it best to wait. He mentioned something about EMG being abnormal and tried explaining it to me, but can't remember what it means really. We did a EEG as well and are waiting for results. He says they are getting closer to diagnosing our families specific Mito but unsure if we will ever know the exact issue. He is not sure if the Mitochondria is malfunctioning or if they are not formed correctly to begin with. Tirzah's eye issue is unresolved. The doc basically told us to return in 6 months if it still is bad, but why if he can't do anything now? I hate having no solutions, don't you? Other than the GI appointment, it was a good trip and I enjoyed meeting Darlene. Unfortunately, we couldn't spend much time together and we were unable to meet Krystena as we needed to get home early today. But we did get some swimming with our girls and tried to relax in-between appointments. Next week, we go for Asenath, Luke, and myself. Can't wait to meet a couple more of you! Darla: mommy to Asenath, Zipporrah, and the gangGet more from the Web FREE MSN Explorer download : http://explorer.msn.com