Here's the re-cap from our April 10 appt.
This guy is an idiot. I will be writing to whoever I need to about this ding bat.
We walked in pretending we knew nothing more than at our last appt with "Idiot" (my nickname for him) in January. We asked him what his next step would be in finding a Dx for Logen. He said a blood test for Mitochondrial "stuff". We said ok, explain. He blah, blah, blahed. We half listened- already hearing the cons and pros of the biopsy and blood testing from Dr B in St Louis. And, as you all know by now- we trust StL with everything b/c they haven't screwed up.
So, interesting part happens. He says this is the LAST step for Logen. IF this blood work comes back normal, then we are done. There is no more testing. This is it, end of the road.
I sat up and said, "Well Dr Idiot- Have you heard of Dr Shoffner?"
Dr Idiot: Hmmm. Yes. (puzzled look. crap! How do you know about him?!)
Me: Would you consider sending Logen to him for a muscle biopsy?
Dr Idiot: Well, I don't really think that would be necessary if the blood work is normal
Me: From what I have been told and researched myself, the blood tests can be wrong. I think it would be best to get accurate results so we can begin treatment, if possible.
Dr Idiot: (Another oh crap look! This mom may actually know what she's talking about. And, he just sits there like a big dufus.)
I'm not kidding- he wraps it up by TELLING me we will draw the labs and he will see us soon. I'm like, uh- WHAT?! I went ahead with the labs, b/c IF they show something- then, ok- we may have an answer sooner (7-8 weeks). But, I really DOUBT we drive 4 hours to see this guy again. Horrible. And, how can you tell a family that this is the end of the road for them? It's obviously NOT. Had we not had the knowledge we do and not been to StL, then we wouldn't have known about Shoffner. There are other familes out there trusting this man. And, I feel he's incompetant. He was arrogant. He walked in saying he was the best there is. And, he is clearly NOT. He told us this the last time we saw him as well. I should have taken Logen and ran quickly then, but I gave him a 2nd chance.
So, there's part one of drama from those appts. Crap! Total Crap. I'm going to bed now. I'll be back soon!
PS: the short 1-2 line posts are via text. Thats why they are short. :)
Suzanne's Baptism 1992
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Linda Anderson sent Suzanne this picture of the family on her baptism day
on February 15, 1992.
[image: Share/Save/Bookmark]
5 months ago
Oh, I am sorry. Just more proof to trust your gut and that mothers know MORE than doctors.
ReplyDeleteOh sweetie I am sorry it did not go the way you planned but I agree go with your mommy instinct I have all along and have been right. Hugs
ReplyDeleteHi, I'm a Mom looking for a diagnosis for my little girl. We are headed to see Dr. Shoffner next month...I came across your blog because I was "googling" him. Anyway, our Pediatrician sent Dr. Shoffner a letter with her records. I downloaded the form right off his website. Lo and behold today we got a call from them! I am so hopeful! Wishing you and your family all the best too!
ReplyDeleteThanks Amber! I would love to hear how things turn out for your daughter. I tried to click your name, however- your profile is not accessible. I wish you all the best.
ReplyDelete