Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Darla, This is horrifying. I am appalled beyond words. Do you have any options for recourse? ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 What a HUGE disappointment! Poor Zipporah. I can't believe someone let that happen, did they not know how important it was? Do they know what we go through? Dr. Whiteman informed me the other day that he discovered why we hadn't heard anything back from the muscle biopsy. Without his knowledge or approval, the Mayo laboratories decided to NOT send Zipporrah's biopsy on to Buffalo. They felt it didn't have enough variation to send it on even though they are NOT the professionals in the Mito area. I am so ticked about this as we have waited over 9 months to hear back about the biopsy with many requests for them to FIND out where it was and now after this long, if there is actually some muscle left, it is not worth it to send it on as it has been frozen for so long. I think it is absolutely atrocious that my daughter had to suffer through the healing of this procedure only for someone to decide NOT to send it where they were told to. So our hope of getting a definitive complex is gone. We cannot go somewhere else and don't want to at this point anyway, but I am in shock that this happened and that Dr. Whiteman didn't know about it sooner. Where was the communication??? Don't get me wrong, I love Dr. Whiteman and he is very caring and thorough, but he is just too busy to know what is going on lately. He doesn't have a personal nurse that can return calls and it is really starting to affect the care he can give his patients. It isn't his fault but Mayo's fault. They need to do something about the situation before Dr. Whiteman too joins the rank of the other Mito docs who either retire or cut off new patients or does diagnostics only. He is very frustrated with his circumstances lately. I feel bad for him, and yet am frustrated that my girls' care is being compromised in some manners due to his lack of time. As large as Mayo is, the fact that he is the only full-time Geneticist is unacceptable and ridiculous! Sorry to vent, but I am understandably disappointed. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor ADVERTISEMENT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Man, Darla. That really stinks!!! I'm sorry you are having to go through this and can only imagine the frustration you are feeling. Kim - Mom to and Lindsey (3) Partial Complex I Muscle Biopsy GONE! > > Dr. Whiteman informed me the other day that he discovered why we > hadn't heard anything back from the muscle biopsy. Without his knowledge > or approval, the Mayo laboratories decided to NOT send Zipporrah's biopsy > on to Buffalo. They felt it didn't have enough variation to send it on > even though they are NOT the professionals in the Mito area. I am so > ticked about this as we have waited over 9 months to hear back about the > biopsy with many requests for them to FIND out where it was and now after > this long, if there is actually some muscle left, it is not worth it to > send it on as it has been frozen for so long. I think it is absolutely > atrocious that my daughter had to suffer through the healing of this > procedure only for someone to decide NOT to send it where they were told > to. So our hope of getting a definitive complex is gone. We cannot go > somewhere else and don't want to at this point anyway, but I am in shock > that this happened and that Dr. Whiteman didn't know about it sooner. > Where was the communication??? Don't get me wrong, I love Dr. Whiteman > and he is very caring and thorough, but he is just too busy to know what > is going on lately. He doesn't have a personal nurse that can return > calls and it is really starting to affect the care he can give his > patients. It isn't his fault but Mayo's fault. They need to do something > about the situation before Dr. Whiteman too joins the rank of the other > Mito docs who either retire or cut off new patients or does diagnostics > only. He is very frustrated with his circumstances lately. I feel bad > for him, and yet am frustrated that my girls' care is being compromised in > some manners due to his lack of time. As large as Mayo is, the fact that > he is the only full-time Geneticist is unacceptable and ridiculous! > Sorry to vent, but I am understandably disappointed. > > > See www.caringbridge.org/ia/mitomomof9 and this link to see a real look > into Mito using a photo collage of my girls at www.heartbeatsformito.org > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... > Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, > SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian > artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, > dumping syndrome, iron deficiency... > Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & > Marquis (2) (some with Mito symptoms) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Man, Darla. That really stinks!!! I'm sorry you are having to go through this and can only imagine the frustration you are feeling. Kim - Mom to and Lindsey (3) Partial Complex I Muscle Biopsy GONE! > > Dr. Whiteman informed me the other day that he discovered why we > hadn't heard anything back from the muscle biopsy. Without his knowledge > or approval, the Mayo laboratories decided to NOT send Zipporrah's biopsy > on to Buffalo. They felt it didn't have enough variation to send it on > even though they are NOT the professionals in the Mito area. I am so > ticked about this as we have waited over 9 months to hear back about the > biopsy with many requests for them to FIND out where it was and now after > this long, if there is actually some muscle left, it is not worth it to > send it on as it has been frozen for so long. I think it is absolutely > atrocious that my daughter had to suffer through the healing of this > procedure only for someone to decide NOT to send it where they were told > to. So our hope of getting a definitive complex is gone. We cannot go > somewhere else and don't want to at this point anyway, but I am in shock > that this happened and that Dr. Whiteman didn't know about it sooner. > Where was the communication??? Don't get me wrong, I love Dr. Whiteman > and he is very caring and thorough, but he is just too busy to know what > is going on lately. He doesn't have a personal nurse that can return > calls and it is really starting to affect the care he can give his > patients. It isn't his fault but Mayo's fault. They need to do something > about the situation before Dr. Whiteman too joins the rank of the other > Mito docs who either retire or cut off new patients or does diagnostics > only. He is very frustrated with his circumstances lately. I feel bad > for him, and yet am frustrated that my girls' care is being compromised in > some manners due to his lack of time. As large as Mayo is, the fact that > he is the only full-time Geneticist is unacceptable and ridiculous! > Sorry to vent, but I am understandably disappointed. > > > See www.caringbridge.org/ia/mitomomof9 and this link to see a real look > into Mito using a photo collage of my girls at www.heartbeatsformito.org > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... > Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, > SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian > artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, > dumping syndrome, iron deficiency... > Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & > Marquis (2) (some with Mito symptoms) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Darla I am struggeling to find words to express on 'paper' about what happened toyou. I am so sorry. Regarding recourse: A blood or skin biopsy , if you want to, is what I would ask for. At their expense. You still have the right to get answers. Max had a skin biopsy done in September. We are still awaiting results. It only takes a few minutes. Compared to muscle , it is small. Is it less traumatic? Only our kids know. It took a few minutes and she went home with a bandaid and memories. I felt awful. It is truly disturbing to hear what is going on at the Mayo. And it is the best and closest for you to go? Hang in there. You are a great Mom. regards rsoy, mom to max, 5 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Darla I am struggeling to find words to express on 'paper' about what happened toyou. I am so sorry. Regarding recourse: A blood or skin biopsy , if you want to, is what I would ask for. At their expense. You still have the right to get answers. Max had a skin biopsy done in September. We are still awaiting results. It only takes a few minutes. Compared to muscle , it is small. Is it less traumatic? Only our kids know. It took a few minutes and she went home with a bandaid and memories. I felt awful. It is truly disturbing to hear what is going on at the Mayo. And it is the best and closest for you to go? Hang in there. You are a great Mom. regards rsoy, mom to max, 5 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Dear Darla: I'm surprised you didn't go right down to the lab and confront them. This would be a good example to point out to the CEO of Mayo of getting help for Dr. Whiteman. As you had stated he is very busy and does not have a personal nurse to return calls and to check on things for him. Because he is seeing patients; and don't let this sound like an excuse, but he can't remember every detail or followup to do. That is where a secretary/and or personal nurse would be a great benefit to him and his patients and the hospital. Our metabolic doctor in Madison has a secretary and a metabolic nurse/dietician that follows up on my questions so I don't need to bother the doctor. And they just got another metabolic doctor at the Waisman Center to help out. You could probably even set up a meeting to meet with someone because this is so wrong. For someone else to make a judgement call instead of them conferring with Dr. Whiteman. I'm going to have to ask my nurse if they actually sent Leah's biopsy on to town or did some one in the lab make the determination that her biopsy looked fine. I would definetly do something here. Leah did have another muscle biospy done so she has two scars now. The second one was a little more tougher on her because of how much movement she does and not wanting to have bandaides on her. But she did just fine even when it got an infection from good old Lake Michigan water way after the time was allowed for her to get it wet. I would put more of the blame on Mayo and try to get this corrected. But as if you have all the time in the world to do this. I'm thinking of you and your family and hope some thing better comes out of this bad mistake on Mayo's part. Nerenhausen mom to Leah Darla Klein wrote: > Dr. Whiteman informed me the other day that he discovered why we hadn't >heard anything back from the muscle biopsy. Without his knowledge or >approval, the Mayo laboratories decided to NOT send Zipporrah's biopsy on to >Buffalo. They felt it didn't have enough variation to send it on even >though they are NOT the professionals in the Mito area. I am so ticked >about this as we have waited over 9 months to hear back about the biopsy >with many requests for them to FIND out where it was and now after this >long, if there is actually some muscle left, it is not worth it to send it >on as it has been frozen for so long. I think it is absolutely atrocious >that my daughter had to suffer through the healing of this procedure only >for someone to decide NOT to send it where they were told to. So our hope >of getting a definitive complex is gone. We cannot go somewhere else and >don't want to at this point anyway, but I am in shock that this happened and >that Dr. Whiteman didn't know about it sooner. Where was the >communication??? Don't get me wrong, I love Dr. Whiteman and he is very >caring and thorough, but he is just too busy to know what is going on >lately. He doesn't have a personal nurse that can return calls and it is >really starting to affect the care he can give his patients. It isn't his >fault but Mayo's fault. They need to do something about the situation >before Dr. Whiteman too joins the rank of the other Mito docs who either >retire or cut off new patients or does diagnostics only. He is very >frustrated with his circumstances lately. I feel bad for him, and yet am >frustrated that my girls' care is being compromised in some manners due to >his lack of time. As large as Mayo is, the fact that he is the only >full-time Geneticist is unacceptable and ridiculous! > Sorry to vent, but I am understandably disappointed. > > >See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into >Mito using a photo collage of my girls at www.heartbeatsformito.org >Darla: mommy to >Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, >hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... >Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, >GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, >disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping >syndrome, iron deficiency... >Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & >Marquis (2) (some with Mito symptoms) > > > >Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Our metabolic doctor in Madison has a secretary and a metabolic nurse/dietician that follows up on my questions so I don't need to bother the doctor. And they just got another metabolic doctor at the Waisman Center to help out. Leah, Can you tell me who this other metabolic dr is? Is it Dr. Rice? We, too see Dr. Wolff and Sandy at the Waisman Center. Are you happy with Dr. Wolff? I just can't seem to like him much lately. I don't know what it is about him. I think it's that when he comes into the room, it's after the fellow and residents have already been there and have done the major work up, and then he comes in and swiftly gives an opinion or stares and Devin then says something like "come back in a year" or "no, we don't need to test for that", etc. I tend to rely more on Dr. Rice than Dr. Wolff. Dr. Wolff is also the one who turned down our request for Devin's wish. Grrrrr!!! *Ü* e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 e: I just sent you an email. Can you tell if you got it alright. Thanks e wrote: Our metabolic doctor in Madison has a secretary and a metabolic nurse/dietician that follows up on my questions so I don't need to bother the doctor. And they just got another metabolic doctor at the Waisman Center to help out. Leah, Can you tell me who this other metabolic dr is? Is it Dr. Rice? We, too see Dr. Wolff and Sandy at the Waisman Center. Are you happy with Dr. Wolff? I just can't seem to like him much lately. I don't know what it is about him. I think it's that when he comes into the room, it's after the fellow and residents have already been there and have done the major work up, and then he comes in and swiftly gives an opinion or stares and Devin then says something like "come back in a year" or "no, we don't need to test for that", etc. I tend to rely more on Dr. Rice than Dr. Wolff. Dr. Wolff is also the one who turned down our request for Devin's wish. Grrrrr!!! *Ü* e Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Darla, I know exactly what your are going thru! Chelsea's initial bx results were inconclusive, and then sent away (muscle to NY and skin to Toronto). We waited over a year, only to hear that not enough of the sample was left to do the testing. She was left with a nonspecific dx with little hope of ever finding what was going on. It was so frustrating! I had considered taking her to one of the mito specialists for another bx, but had pretty much given up hope myself that she would ever get a specific dx. But don't give up, strange miracles can happen! It was the 2nd opinion nuero we saw at Shriner's Hospital in Chicago who dx'd Chelsea with Rett Syndrome. If he had not been so persistent in wanting to find a dx for her, we may have never found out she had RS. I certainly hope Dr. Whiteman has some new avenues for you to pursue. I will keep you in my prayers. Hope you all are healthy=) e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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