Thursday, December 13, 2012

Seattle Doc Visit and First Flight With Service Dog

Sunday evening, Garrett, Sammy the Autism Dog and I flew to Seattle, Washington, and met my mom there. Mom flew up from Alabama to go to the appointment with the Mito doctor and then fly back to Idaho with us to enjoy a week of visiting and then a wild weekend of dance recital and Christmas program!

Monday's appointment with Dr. Saneto, Mitochondrial Disease specialist at Seattle Children's went fine. It was our second appointment with him. He chatted with us about EPI-743, the "miracle drug" for Mito and let us know it is entering a very critical new trial which, if it goes well, could mean an FDA approved drug available to Garrett in a bit over a year at best, but at worst, if the trial for Leigh's Disease, a very rapidly progressing form of Mito, doesn't go really well, the drug could be scrapped.....gggrrrrr. Mito differs from type to type just as it can from kiddo to kiddo with the same type, so the drug cannot be expected to offer the same exact results for each type. We wait.......

My mom asked some very good questions such as, "During our Make-A-Wish trip to Disney world, a relative was saying that people would have to not believe anything was wrong with Garrett by the way he looks and wonder why he was on the trip. How can you explain this so I can understand how he can look so great but have this stuff going on in his body making it deplete?" Dr. Saneto explained that Garrett is ticking, but that they are learning things about mitochondria like how the mitochondria can bump into one another and almost fuse together, for lack of a better term, and if one is function at higher precentage than other, they average out. So this can cause percentage of mito function to increase or decrease almost moment to moment. SO this can hurt or help. Depends on who is bumping into whom. So while he is ticking, it is hard to tell at what rate he is ticking. He said the Mito drug may help both on a cellular level with individual mitochondria or even possible with the mitochondrial DNA that is depleting in Garrett's form of Mito. We won't know unless he gets to take the drug......if it makes it through trials and gets approval. Prayers!!

Dr. Saneto also asked about any other labs or tests we have had done. The disc with the 24 hour EEG results couldn't be opened with his computer yet, so he will get that worked out and review it. He also didn't have the blood work he asked to have done two weeks ago in Boise. Of course, he has it now, and got it an hour after our appointment was over. Only abnormal was Garrett's live enzyme AST was elevated. Nurse will get back to us on that. LOVE, LOVE, LOVE his nurse, Pam!!! She is one sharp lady!!!! On top of things!! Then Dr. Saneto went on to ask about other appointments we have had. I let him know that Garrett's cillia in his ears, the little hairs, are not working at all. They were completely unresponsive in testing by that audiologist. Then Dr. S mentioned Auditory Neuropathy and asked that we return back to the audiologist very soon for discussion about getting Garrett an FM hearing device. it is like a microphone for a caregiver, teacher or television, to have nearby, and Garrett would wear little ear buds or aides or headphones to hear the transmission of the sound he needs to focus on. It was eye-opening as Dr. S painted the image of Garrett's complete inability to prioritize sound, thus possibly this explains his frustration to lots of noise chaos or any noise he does not control. Back to that later....
Overall, the appointment was good. We will go back in six months. I pray that then we will learn EPI-742 is soaring through FDA approval!!!

After the appointment, we picked up prescription refills and headed down to Krispy Kreme and then to the children's museum where we played the day away! We spent a second night in Seattle, and rested more than the first night that Garrett grinded his teeth all night!! Tuesday, we slept in a little, a very little, but rested well and headed out for lunch and to the airport. See previous post about Chinese dining experience with Garrett!!! Our one hour, ten minute flight to Boise was easy, and then we had a quick one hour drive out to the edge of the middle of nowhere to our home!

Sammy, sweet service dog Sammy. I want to cry just trying to describe her!!!! She went along in her new leash and her service dog vest. Alaska Airlines was very kind about her traveling with us, and Sammy's first flight caused her only one trembling moment when the apparent former naval aviator landed and slammed the turbo-prop's brakes on hard and sent her sliding under the seat in front of us!!! She slept most of the flight below our feet. She was precious and perfect!!! She slept with me in the hotel and Garrett slept with my mom. Sammy is a warm, still girl at night!! She liked hotel life and did perfectly wonderfully pottying at just the right times and places!! Yes, this includes the Seattle airport's pet pottying area outside the councourse where the smokers hang out and Garrett relieves himself too.....oops! I found that having Sammy with us alerted people that there was something special about Garrett besides the fact he told EVERY lady he saw, "You're pretty!" No one gave us ugly stares or made comments about Garrett's awkward and usually loud behavior or ticks or meltdowns. Sammy gave him a hall pass!!! It was truly wonderful!!!

Mom is here until Monday, and we are loving that!!! Next post will be about today's physical therapy and audiology appointments. Lots going down around here.....



  1. K has had chronically elevated liver enzymes for a few years now. Not high enough for it to be emergent, but never in normal limits.

  2. Didn't realize you see Saneto! He is great! Pam is great, too, but we don't see her anymore since our visits are based around the epi-743 study :(. Praying that the epi-743 is showing good results in the studies! Dr. S seems hopeful that it is working! Prayers for you all!

  3. Hi - I read your post and wanted to comment. Our son is on EPI-743 and has been since November 2011. I don't want to be a negative Nelly, but I have surmised from conversations with Dr. Enns as well as a webinar that FDA approval is at least a year away - like 2014. The UMDF and MitoAction did a conference call with Dr. Enns and Edison (you should be able to find it on UMDFs website as they recorded it) and it described the process for FDA approval. I pray it comes quicker as I know many are anxious to try it! I hope you don't take my comment as negative, I'm not trying to be at all. I just know how hard it is to wait and I didn't want you to hope for 6 months and then find out it's another and another etc. I wish you a very merry Christmas. Warm regards, Lori