dupont Marie

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Marie,

we too see inselman for pulmo, falchek for seizures and keto diet ( also for mito), doyle for endocrinology, hopp for nephology, anisman for cardo, ( he has some experience with mito too) barthold for urology, and dr. arch now for metabolic/ mito. we have seen scavina for a workup or two as well. jess has been in the hospital there many times, i just love dupont but we are 2 hrs away from there. you should try to get an appointment with dr. arch. she is very new and she is WONDERFUL. i asked her about cohan once, she told me there were much bigger and better mito docs then him. i was impressed. she knew him. dr. doyle wanted jess to have another muscle biop ( the first one was botched somewhat) and i refused since it doesn't change how we are dealing with her. he sent us to dr arch, after 2 hrs with her and tons of questions she could tell me what type jess has and also told me that another biop wouldn't help anyway. she knows more about mito then anyone else i've ever met.. lol . i have to ask..... do you like inselman? i always ask the nurses before the appointments if she has taken her medicine that day !!! i think she is bi-polar. but she is a good doc. she found a pneumoinia in jess NO ONE else could find, 5 chest x-rays later, countless docs, interns, nurses, and she walked in listened to her, found it, treated her, and she got better. ( jess had gotten the flu and we almost lost her, she went into a coma from no energy to fight the diease, and make her body work. we lost her stomach from that round, 3 wks in dupont that time) oh well, i'm sorry i tend to ramble once in a while. let me know when your a dupont again maybe we will be there at the same time and can meet. i know we have another neuro appt in june. if jess makes it that long. take care,

michele, mom to jessica, mito- DNA depletion, intractable seizures, g-j tube, supra-pubic tube, dysautonomia, bi-pap, 02 dependant, MR, PDD, two port central line named george and nemo. and of course the largest collection of naked barbies in the world ( well almost)