I know that this is just a late night, medical news today, down in the dumps thing and I'll feel better in the morning. But I thought it might also help me to put out there how I'm feeling.
We got our final skin biopsy results back for my son today. It was negative for CPT I and CPT II which leaves mitochondrial disorder as the likely primary metabolic condition. Not a huge surprise. But I'm feeling really down so obviously a big part of me was still hoping for something milder or at least not progressive. Progressive is scary.
We spent almost 3.5 years with me being brushed off by doctor after doctor with him. I finally traveled far enough to find someone to listen and take us seriously. That doctor is far away though and we're following up more local. At first things were good here too...I think because Andrew was sick and being hospitalized and in a rapid decline at that point.
Now he's on medications and mitochondrial supplements and he's apparently symptom wise a responder! Yay! He's doing great right now and I'm so thankful. That's the important thing and I know it.
But. I feel like once again I'm being brushed off. I had to ask my brother in law (a pediatrician at the children's hospital) to see if those labs were in today. They were. They have been for a long time. No one called me.
We had an appointment in early February. I got a call less than a week before canceling it (I had child care set up and everything). They "didn't have enough room in the schedule to block off an appt. time for us". Never mind we had that appointment for 6 months. They didn't even reschedule for the doctor but when I expressed concern about that said I can make an appt. to talk to a genetic counselor if I want (they know nothing about mitochondrial). I know they had their weekly meeting that morning and looked over their schedule to see who to bump and bumped us. Because he's doing well so we're not worth the time. I got the same feeling last appointment...like we moved about 100 spots down on the doctor's priorities. I feel, again, like my son is not being taken seriously. And actually I feel sort of like the doctor feels I'm overly concerned given other kids are much more sick.
We got our final skin biopsy results back for my son today. It was negative for CPT I and CPT II which leaves mitochondrial disorder as the likely primary metabolic condition. Not a huge surprise. But I'm feeling really down so obviously a big part of me was still hoping for something milder or at least not progressive. Progressive is scary.
We spent almost 3.5 years with me being brushed off by doctor after doctor with him. I finally traveled far enough to find someone to listen and take us seriously. That doctor is far away though and we're following up more local. At first things were good here too...I think because Andrew was sick and being hospitalized and in a rapid decline at that point.
Now he's on medications and mitochondrial supplements and he's apparently symptom wise a responder! Yay! He's doing great right now and I'm so thankful. That's the important thing and I know it.
But. I feel like once again I'm being brushed off. I had to ask my brother in law (a pediatrician at the children's hospital) to see if those labs were in today. They were. They have been for a long time. No one called me.
We had an appointment in early February. I got a call less than a week before canceling it (I had child care set up and everything). They "didn't have enough room in the schedule to block off an appt. time for us". Never mind we had that appointment for 6 months. They didn't even reschedule for the doctor but when I expressed concern about that said I can make an appt. to talk to a genetic counselor if I want (they know nothing about mitochondrial). I know they had their weekly meeting that morning and looked over their schedule to see who to bump and bumped us. Because he's doing well so we're not worth the time. I got the same feeling last appointment...like we moved about 100 spots down on the doctor's priorities. I feel, again, like my son is not being taken seriously. And actually I feel sort of like the doctor feels I'm overly concerned given other kids are much more sick.
I am sorry, I know how it feels to be brushed off, it hurts. I am sorry you are having to deal with this.
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I haven't seen her yet. But we'll house you guys here with us.
