Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 I feel so much better after the long phone call I received from Dr. Whiteman tonight. He is going to try to help us by writing a protocol for our local doctor to redo on her stationary, so that the local docs, who will recognize her name, will want to keep a good working relationship with her by doing what is written. (Hopefully) He really likes our pediatrician as he has dealt with her for a while with us and other patients. He feels Asenath and maybe Porrah both probably have floppy bladders so their labs do not reveal how dehydrated they are because of urine retention. Asenath always floods her diapers, 300-400 cc. at night or more, and hardly urinates during the day time. Asenath will see a urologist when we go up to Mayo later this month. (25th-28th) He also wants to further discuss a g-tube for Asenath due to all her problems and will set up a pediatric surgeon appointment with Dr. Moir (He did Asenath's g-tube and muscle/skin biopsy.) I think we accomplished quite a bit on the phone and I feel more comfortable with our situation, knowing he is on our side and understands what has been happening. He also plans to talk to our pediatrician and our in-house (hospital) doctor if possible. We discussed both girls in depth and at the end he told me to "give the girl a hug from him." He can be so sweet! I am encouraged, yet know I still have to deal with the local docs. Kim, I am fighting for us! We will get the hospital help we need yet! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma.. Zipporrah,(5 mon.) Mito, strokes, sensory issues, feeding/breathing issues...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi Darla: Don't you want to just hug your doctor when they understand the problems you are going through with another doctor and how to resolve it. Sounds like you voiced your opinion and concerns to Dr.Whiteman well so he could understand what you went through. I know with our ped. he has something in Leah's records that if parents call when he is not on call that they can call him with any questions regarding what to do. Plus we always bypass the ER and are directly admitted to the hospital. I think the first mistake was telling you to go to the ER for the tube. I think of the ER for emergency and this (I may be wrong here) could have been done as an inhouse procedure without involving that ER doctor. So far we have been lucky that Leah has been able to be admitted directly to the hospital without having to go to the ER to be checked out. I'm so happy that Dr. Whiteman wants to get something in writing and on your doctors stationary. So smart he is. Good luck. You've been through so much right now and not only having the stress of ill children but to get your ideas across to the doctor and to have them listen to you on top of all that is stressful enough. Sounds like that doctor had a little bit of an ego problem if you ask me. Yes, I'm sure she knew about metabolic disease (in a tiny finger way) but to say she knows more than a specialist is beyond my brainwaves. We had dealt with a ped. neurologist that way. Felt he knew more than our metabolic doctor. Needless to say we aren't seeing him any more and plus the good thing is he's moved from the area. Keep us updated as to the next time you go. I think between you and Kim the hospital will get it right. Hopefully sooner than later. Thinking of you and your family. Nerenhausen mom to Leah Darla Klein wrote: I feel so much better after the long phone call I received from Dr. Whiteman tonight. He is going to try to help us by writing a protocol for our local doctor to redo on her stationary, so that the local docs, who will recognize her name, will want to keep a good working relationship with her by doing what is written. (Hopefully) He really likes our pediatrician as he has dealt with her for a while with us and other patients. He feels Asenath and maybe Porrah both probably have floppy bladders so their labs do not reveal how dehydrated they are because of urine retention. Asenath always floods her diapers, 300-400 cc. at night or more, and hardly urinates during the day time. Asenath will see a urologist when we go up to Mayo later this month. (25th-28th) He also wants to further discuss a g-tube for Asenath due to all her problems and will set up a! pediatric surgeon appointment with Dr. Moir (He did Asenath's g-tube and muscle/skin biopsy.) I think we accomplished quite a bit on the phone and I feel more comfortable with our situation, knowing he is on our side and understands what has been happening. He also plans to talk to our pediatrician and our in-house (hospital) doctor if possible. We discussed both girls in depth and at the end he told me to "give the girl a hug from him." He can be so sweet! I am encouraged, yet know I still have to deal with the local docs. Kim, I am fighting for us! We will get the hospital help we need yet! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma.. Zipporrah,(5 mon.) Mito, strokes, sensory issues, feeding/breathing issues... Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi Darla: Don't you want to just hug your doctor when they understand the problems you are going through with another doctor and how to resolve it. Sounds like you voiced your opinion and concerns to Dr.Whiteman well so he could understand what you went through. I know with our ped. he has something in Leah's records that if parents call when he is not on call that they can call him with any questions regarding what to do. Plus we always bypass the ER and are directly admitted to the hospital. I think the first mistake was telling you to go to the ER for the tube. I think of the ER for emergency and this (I may be wrong here) could have been done as an inhouse procedure without involving that ER doctor. So far we have been lucky that Leah has been able to be admitted directly to the hospital without having to go to the ER to be checked out. I'm so happy that Dr. Whiteman wants to get something in writing and on your doctors stationary. So smart he is. Good luck. You've been through so much right now and not only having the stress of ill children but to get your ideas across to the doctor and to have them listen to you on top of all that is stressful enough. Sounds like that doctor had a little bit of an ego problem if you ask me. Yes, I'm sure she knew about metabolic disease (in a tiny finger way) but to say she knows more than a specialist is beyond my brainwaves. We had dealt with a ped. neurologist that way. Felt he knew more than our metabolic doctor. Needless to say we aren't seeing him any more and plus the good thing is he's moved from the area. Keep us updated as to the next time you go. I think between you and Kim the hospital will get it right. Hopefully sooner than later. Thinking of you and your family. Nerenhausen mom to Leah Darla Klein wrote: I feel so much better after the long phone call I received from Dr. Whiteman tonight. He is going to try to help us by writing a protocol for our local doctor to redo on her stationary, so that the local docs, who will recognize her name, will want to keep a good working relationship with her by doing what is written. (Hopefully) He really likes our pediatrician as he has dealt with her for a while with us and other patients. He feels Asenath and maybe Porrah both probably have floppy bladders so their labs do not reveal how dehydrated they are because of urine retention. Asenath always floods her diapers, 300-400 cc. at night or more, and hardly urinates during the day time. Asenath will see a urologist when we go up to Mayo later this month. (25th-28th) He also wants to further discuss a g-tube for Asenath due to all her problems and will set up a! pediatric surgeon appointment with Dr. Moir (He did Asenath's g-tube and muscle/skin biopsy.) I think we accomplished quite a bit on the phone and I feel more comfortable with our situation, knowing he is on our side and understands what has been happening. He also plans to talk to our pediatrician and our in-house (hospital) doctor if possible. We discussed both girls in depth and at the end he told me to "give the girl a hug from him." He can be so sweet! I am encouraged, yet know I still have to deal with the local docs. Kim, I am fighting for us! We will get the hospital help we need yet! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma.. Zipporrah,(5 mon.) Mito, strokes, sensory issues, feeding/breathing issues... Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi Darla: Don't you want to just hug your doctor when they understand the problems you are going through with another doctor and how to resolve it. Sounds like you voiced your opinion and concerns to Dr.Whiteman well so he could understand what you went through. I know with our ped. he has something in Leah's records that if parents call when he is not on call that they can call him with any questions regarding what to do. Plus we always bypass the ER and are directly admitted to the hospital. I think the first mistake was telling you to go to the ER for the tube. I think of the ER for emergency and this (I may be wrong here) could have been done as an inhouse procedure without involving that ER doctor. So far we have been lucky that Leah has been able to be admitted directly to the hospital without having to go to the ER to be checked out. I'm so happy that Dr. Whiteman wants to get something in writing and on your doctors stationary. So smart he is. Good luck. You've been through so much right now and not only having the stress of ill children but to get your ideas across to the doctor and to have them listen to you on top of all that is stressful enough. Sounds like that doctor had a little bit of an ego problem if you ask me. Yes, I'm sure she knew about metabolic disease (in a tiny finger way) but to say she knows more than a specialist is beyond my brainwaves. We had dealt with a ped. neurologist that way. Felt he knew more than our metabolic doctor. Needless to say we aren't seeing him any more and plus the good thing is he's moved from the area. Keep us updated as to the next time you go. I think between you and Kim the hospital will get it right. Hopefully sooner than later. Thinking of you and your family. Nerenhausen mom to Leah Darla Klein wrote: I feel so much better after the long phone call I received from Dr. Whiteman tonight. He is going to try to help us by writing a protocol for our local doctor to redo on her stationary, so that the local docs, who will recognize her name, will want to keep a good working relationship with her by doing what is written. (Hopefully) He really likes our pediatrician as he has dealt with her for a while with us and other patients. He feels Asenath and maybe Porrah both probably have floppy bladders so their labs do not reveal how dehydrated they are because of urine retention. Asenath always floods her diapers, 300-400 cc. at night or more, and hardly urinates during the day time. Asenath will see a urologist when we go up to Mayo later this month. (25th-28th) He also wants to further discuss a g-tube for Asenath due to all her problems and will set up a! pediatric surgeon appointment with Dr. Moir (He did Asenath's g-tube and muscle/skin biopsy.) I think we accomplished quite a bit on the phone and I feel more comfortable with our situation, knowing he is on our side and understands what has been happening. He also plans to talk to our pediatrician and our in-house (hospital) doctor if possible. We discussed both girls in depth and at the end he told me to "give the girl a hug from him." He can be so sweet! I am encouraged, yet know I still have to deal with the local docs. Kim, I am fighting for us! We will get the hospital help we need yet! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma.. Zipporrah,(5 mon.) Mito, strokes, sensory issues, feeding/breathing issues... Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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