WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, February 2, 2012

GI and Abby

Well, we saw the long awaited GI Dr. Yesterday.

I have to be honest, I went in expecting a nice guy(I did my research!), and figured he would give us a script for a few meds, tell her to try a few tricks and have him send us on our way. This guy has a reputation for not wanting to intervene. He tends to want to give a kid some time to heal up, and make some changes to diet etc. He also is one of the few in Houston who has seen a number of Mito kids.

So, when he was way more concerned then we were I PANICKED! Abby Panicked! We were completely unprepared for a Dr. to react so strongly.


His suspicious is that there are a few problems at work. He wants her to see another GI too, so 2 to handle her? And I thought he would just pat us on the back and send us back out the door with some dairy free ensure and probiotics. I am still reeling a bit.


I think he was concerned about her lack of a "team" approach for care. I however, am not. Right now Abby actually has all her organs being looked after nicely- they may not talk to each other, but her Mito specialist overlooks everything, and her Mito specialist has a very unique gift of putting the smallest pieces together- I have faith she would let us know if we had a problem. Anyone of you that knows me at all, knows it is impossible for me not to be frank- and I was quite clear with him why we steer clear of Houston for care. I was pleased when he acknowledged that and understood. I was annoyed when he tried to get us to see "his" geneticist even after I was "frank"- no way no how am I going back through diagnostics ever again with Abby- she has had enough of that. It is what it is.. If they cannot find what they want in her blood they are out of luck- no more biopsies. No more EMG's.. Done. No need to torture her anymore. !5 years was way more then 10 people should go through in a lifetime.


What I felt from him is that we were perhaps a little bit in denial- he seemed to keep trying to get me to acknowledge that was a problem.


Here's the deal though, yes, I know there is a problem. I also know Abby and her process. Like many things in life I think where her health is at is somewhere in the middle- somewhere between "lets intervene now!" and lets try a couple more weeks of coconut milk and chicken broth.


At the end of the day, we liked him. I am hoping his frustation was more about the difficulty of getting good Mito care for her, then directed at our determination to avoid as many interventions as possible. I don't think Dr.s understand what it costs Abby to just make it to an appointment. That she will be in PJ's and napping all week to recover. The interventions rob her of a ton of energy, so any intervention must guarantee that it will provide her with many benefits - you cannot just go run her through things on a hunch..that causes her progression- and we cannot afford that.

So, looks like next up is a visit with his motility GI guy. Then scheduling a scope- not fun. But, he assures us it would be the quickest way to rule out a lot of different things and streamline what we need to do for her. I don't think he thinks some nutrition drinks are going to work to fix all of the issues, I felt like he was very anxious for me to understand that sooner then later she may need a tube- but, with this disease, progression is unknown. Abby could be fine for many more years, or she might hit the wall tomorrow. I suspect he hasn't dealt with a odd duck like Abby before. Boy, is he in for a ride! LOL

My Mito Moms were great- they talked me off the roof yesterday, and reassured me that finding a Dr. that actually understood the big picture of Abby's Mito issues was a very good thing- I feel much better, but am still a little panicked.


I don't trust many Drs.-and for good reason. I know this Dr. probably feels a little handicapped by the fact that I am not interested in her seeing his team- and I will try to compromise because I don't want to tie his hands behind his back.


What I am hoping will happen is he will have relaxed a bit by the next time we see him(and realize we see one of the very best Mito drs. in the country, he had no idea who Dr. Kendall was)and hopefully recognize that because of 15 years of dead ends with Drs. we have developed our own methods to keep Abby healthy- that we have sacrificed EVERYTHING for her health and we are far from not taking her health seriously- our family dynamic is based on Abby. Also, before I see him again, I need to breath a little and work on trying to trust a Dr. for once..


I am thrilled to say Abby managed the first bottle of liquid nutrition well! Despite her history of dairy allergies, and this one having some sort of broken down dairy protein she said it did not hurt anymore then anything else. Victory. I truly believe if we can get her nutrition back on track, her body will heal with time. Good food won't get rid of the depletion, I know that. but, we can get back to a level that she can go back to our way of management.

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