Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 But before you dismiss him think about this......You have a doctor that is worried about what will happen with your child 20 years from now!! That is great! It means he thinks there is a possibility that your son will be alive 20 years from now. I think that would be a great thing had he ever heard of mito before today, but he hadn't...even after me giving him the info, he couldn't remember the word...this is quite shocking considering they learn about mitochondria, the noun, in high school...I would have been very grateful if that were his stance had he known anything about the disease...he walked into the room and told me he never heard of it...they said they were going to look it up...i need to find something good to give him to read... thanks for your comments...i think that will come in handy with some of the docs in the future...I hope I can find a doc that is willing to put my child's best interest in the forefront... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 His comment (word for word) was "if you are still alive in a year, we'll talk about it then." Needless to say I am still hear, but he has not seen my since. It seems that drs either totally forgot what they learned about mitochondrial defects or they only remember that they are fatal...When we were raising funds to pay for our visit to see Shoffner, we had a dr friend say that he didnt know why we were doig this...mito was a terrible disease (as if I had a choice in what he had) and there was no cure and no point in doing anything... I liked the article that dena sent...I bet that program cost boo-coos of money but it would nice to have it...the drs would really hate us then... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Deb I can feel your frustration and had a somewhat similar experience. I was sent to see a cardiologist due to some chest heaviness and an abnormal post exercise heart scan. The guy was nice, did a heart cath, etc. When I returned in 6 months, I had my mito diagnosis. I gave him a copy of my report saying that I should have an EKG and echo yearly. By this time it had been over a year. I asked about him ordering them. His comment (word for word) was " if you are still alive in a year, we'll talk about it then. " Needless to say I am still hear, but he has not seen my since. I wanted to scream and I am guessing you want to do. I think that parents know their child the best and have to weigh the suggestions of doctors and together they make decisions. The days of doctors dictating should be over. I'll now get off my soapbox. laurie From: VisibleWorship@... Reply-To: Mito Date: Tue, 16 Jul 2002 22:17:21 EDT To: mito Subject: mass confusion Well... I had a fun day...first to the Othotist to pick up 's new inserts which he refused to wear. then to the Endocronologist...we had seen this doc one other time before came down with mito (my own personal saying there) to be evaluated for body odor and some plumbing issues... this was our first dr's visit since our diagnosis and I think I am ready to crawl in a hole...no, its not really that bad but I feel frustrated with piling on more and more diagnosis and how do you decide what is important and what you can let go? Not only did they tell me that has Nystagmus, a heart Murmur, an enlarged liver, which are all new...but they went on and on about how was high risk for diabetes and i was not being a good parent by not changing his diet...we already have him drink all diet drinks...crystal lite...and he only gets three cookies a day, if that and candy once a week...but they said we needed to cut everything out...I have two other children' who are eating the same things and doign fine...the guy was telling me that if he got diabetes and I didn't change something that it could shorten his life by a couple decades and I am thinking...yeah, for a normal person that would be a big deal but we all know that he isn't going to get as far as that guy thinks...I am for changing what I can...i told him that didn't like Carrots and stuff, even with the dip...he was like 'well who exactly is the parent here?'...is it really worth all the grief just over the POSSIBILITY, especially considering his future anyway... he knew nothing about mito...not sure he even knew the word...when he would refer to it, he called it 'myopathy'...it was frustrating...am I making any sense? should I have told him anything specific to mito and endocronal probs? I tried to find some info to take with me and couldn't find anything... help!!! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 ----- Original Message ----- From: VisibleWorship@... things and doing fine...the guy was telling me that if he got diabetes and I didn't change something that it could shorten his life by a couple decades and I am thinking...yeah, for a normal person that would be a big deal but we all know that he isn't going to get as far as that guy thinks...I am for changing what I can...I told him that didn't like Carrots and stuff, even with the dip...he was like 'well who exactly is the parent here?'...is it really worth all the grief just over the POSSIBILITY, especially considering his future anyway... My 2 cents' YES and yes and yes it is worth all the grief for the possibility! And that goes for all of our kids- Mito or not. No one knows 's future. The possibilities of all he will be and do and feel and live...they are unnumbered and unknown. I understand that you feel the doctor was putting you down as a parent. And that would hurt. I've been there as has everyone else on this list and it makes you want to come home and cry. But before you dismiss him think about this......You have a doctor that is worried about what will happen with your child 20 years from now!! That is great! It means he thinks there is a possibility that your son will be alive 20 years from now. We all have far too many experiences with the doctors who have the attitude that a child has Mito, they're dying afterall, so why bother. This guy cares about your child and the rest can probably be worked out as you get to know each other and build a relationship. A few months into knowing our primary doctor we got in a big disagreement one day. He wanted to keep a Naso-Jejunal tube in my child and I wanted to do a permanent J tube (surgery). We were really going at it and I felt like he was saying I was a bad mom for wanting surgery (he wasn't but that was how I perceived it). I told him , that if it was up to him my son would have a NJ tube hanging out of his nose when he went to kindergarten. he yelled back that actually if it was up to him we would be hanging tassels off of it at his highschool graduation. I burst out laughing and crying at the same time when he said that. I realized that day that no matter how much we disagree about the specifics of what to do about my kids from time to time....he wants the best for them and views their lives as lives full of potential and possibilities no matter what the report from Atlanta said, no matter how many nights we were told it did not look good, no matter how many organs fail. Doctors who believe our kids have a future are worth their weight in gold! Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 it's the ones who think they know everything there is to know yet actually have outdated myths as their body of knowledge that I stay away from. I totally agree...and this would be the case about any subject...I think these are the dangerous doctors...actually the endocro didn't say he knew nothing...it was just obvious...he hadn't heard the word and he couldn't remember it, but he wasn't arrogant or humble about it either way...I'm not sure where that falls in them being good or not...but basically we have to see him twice a year and it may still be optional until we have a true endocro problem...i thought they would deal with blood pressure but they told me I had to see a pulmonologist for that...we are already going to a cardiologist...you ever feel you get specialist overkill? deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Don't totally freak on the other stuff yet. Is on Co Q, carnitor, etc??? Those are imperative for the heart especially. Owen also has a Murmur and rod and cone involvement w/his eyes. Not nystagmus though he is on CoQ...I started him on that myself...Shoffner suggested the carnitor but since the docs here don't have a clue, I am just waiting for Korson to write us a prescription and tell the neuro here, who is my one saving grace for a doc, what to do and then we will go from there...I might be able to convince the cardiologist to do it... I really thought most murmurs were from birth... had left-ventricle hypotrophy when we adopted him at 7 months but then the doc discharged him at a year old...the cardio who lectured in Dallas told me to take him in if we got a mito dx...I was able to schedule with that same doc so I am looking forward to what he says...It just seems so unreal that all these new problems can develop so fast...heart issues, liver and another eye problem (previous dxs are ptosis, alternating esotropia, progressive myopathy, astygmatism)...I guess my head is still spinning and I can't wait to see Korson...and you guys...lol... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Deb Ignorance is a terrible thing and you have had your fill. Talk to Korson about what kind of diet should be on, and as far as the docs down there, in one ear out the other for now. You will need to get them some info to read though. Maybe copy the Think Mitochondria from the TX conference. As long as you have a doc there that will be willing to take some phone directives from Korson, you should be ok. Don't totally freak on the other stuff yet. Is on Co Q, carnitor, etc??? Those are imperative for the heart especially. Owen also has a Murmur and rod and cone involvement w/his eyes. Not nystagmus though. hang in there!! Bridget Mom To Owen "water boy" Willis, 3.5 yrs, Complex 1 and Co Q 10 deficiency, PDD/NOS and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday) mass confusion Well...I had a fun day...first to the Othotist to pick up 's new inserts which he refused to wear. then to the Endocronologist...we had seen this doc one other time before came down with mito (my own personal saying there) to be evaluated for body odor and some plumbing issues...this was our first dr's visit since our diagnosis and I think I am ready to crawl in a hole...no, its not really that bad but I feel frustrated with piling on more and more diagnosis and how do you decide what is important and what you can let go?Not only did they tell me that has Nystagmus, a heart Murmur, an enlarged liver, which are all new...but they went on and on about how was high risk for diabetes and i was not being a good parent by not changing his diet...we already have him drink all diet drinks...crystal lite...and he only gets three cookies a day, if that and candy once a week...but they said we needed to cut everything out...I have two other children' who are eating the same things and doign fine...the guy was telling me that if he got diabetes and I didn't change something that it could shorten his life by a couple decades and I am thinking...yeah, for a normal person that would be a big deal but we all know that he isn't going to get as far as that guy thinks...I am for changing what I can...i told him that didn't like Carrots and stuff, even with the dip...he was like 'well who exactly is the parent here?'...is it really worth all the grief just over the POSSIBILITY, especially c! onsidering his future anyway...he knew nothing about mito...not sure he even knew the word...when he would refer to it, he called it 'myopathy'...it was frustrating...am I making any sense? should I have told him anything specific to mito and endocronal probs? I tried to find some info to take with me and couldn't find anything...help!!!deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Deb, Some med students learn about mito in med school but most don't. Their biochemical textbooks have a few paragraphs about Leigh's and MELAS and that is about it unless they happen to have clinical experiences or a teacher who knows about it. I teach 3rd yr. med students and I ask them if they have heard of it and they are honest enough to mostly tell me no. The ones who don't have a clue about mito are not the bad ones. We have a great team of docs and none of them are metabolic experts. Most knew next to nothing about mito before we met them. it's the ones who think they know everything there is to know yet actually have outdated myths as their body of knowledge that I stay away from. Anne______________________________________________________- I think that would be a great thing had he ever heard of mito before today, but he hadn't...even after me giving him the info, he couldn't remember the word...this is quite shocking considering they learn about mitochondria, the noun, in high school...I would have been very grateful if that were his stance had he known anything about the disease...he walked into the room and told me he never heard of it...they said they were going to look it up...i need to find something good to give him to read...thanks for your comments...i think that will come in handy with some of the docs in the future...I hope I can find a doc that is willing to put my child's best interest in the forefront...deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Loved your response!!!!!! Love your attitude. So true, so true, so true. Bec > My 2 cents' YES and yes and yes it is worth all the grief for the possibility! And that goes for all of our kids- Mito or not. No one knows 's future. The possibilities of all he will be and do and feel and live...they are unnumbered and unknown. > > I understand that you feel the doctor was putting you down as a parent. And that would hurt. I've been there as has everyone else on this list and it makes you want to come home and cry. But before you dismiss him think about this......You have a doctor that is worried about what will happen with your child 20 years from now!! That is great! It means he thinks there is a possibility that your son will be alive 20 years from now. > > We all have far too many experiences with the doctors who have the attitude that a child has Mito, they're dying afterall, so why bother. This guy cares about your child and the rest can probably be worked out as you get to know each other and build a relationship. > > A few months into knowing our primary doctor we got in a big disagreement one day. He wanted to keep a Naso-Jejunal tube in my child and I wanted to do a permanent J tube (surgery). We were really going at it and I felt like he was saying I was a bad mom for wanting surgery (he wasn't but that was how I perceived it). I told him , that if it was up to him my son would have a NJ tube hanging out of his nose when he went to kindergarten. he yelled back that actually if it was up to him we would be hanging tassels off of it at his highschool graduation. I burst out laughing and crying at the same time when he said that. I realized that day that no matter how much we disagree about the specifics of what to do about my kids from time to time....he wants the best for them and views their lives as lives full of potential and possibilities no matter what the report from Atlanta said, no matter how many nights we were told it did not look good, no matter how many organs fail. Doctors who believe our kids have a future are worth their weight in gold! > > Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 AMEN to that!! & Savage. Re: mass confusion Doctors who believe our kids have a future are worth their weight in gold! Anne Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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