Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 I have 2 children with mito, dysautonomia one severe the other moderate, one has severe Cyclic vomiting, one has migraines and both have a IgG defiency. I have a couple of web sights that I think are great hope you enjoy reading them. Best of luck Sincerely, Donna www.dynakids.org www.dysautonomia-eduinfo.org www.ndrf.org > > From: Mito > Date: 2004/10/26 Tue PM 09:43:58 EDT > To: Mito > Subject: Digest Number 2870 > > > > There are 2 messages in this issue. > > Topics in this digest: > > 1. Re: Re: & Anne - CDG(transferrin) > > 2. RE: tachycaria > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Tue, 26 Oct 2004 12:17:36 -0500 > > Subject: Re: Re: & Anne - CDG(transferrin) > > To be honest sometimes I wonder what hasn't been checked on her. > Sometimes I feel we aren't getting the best care for her because the > neurologist gets stuck in these ruts of beliefs and doesn't want to look at > other possibilities. For the longest time she was stuck on the " Chicken pox > caused the Vasculitis " thing. Then when it was obvious it didn't she leaped > to other reasons that just haven't fit. Our Rheumotologist believes Mito > caused it. Does the CMG cause it, do you know? I am totally confused about > the CMG to be honest. I read tons on it but know I couldn't explain it to > anyone. The girls do have lots of the symptoms described, so I think I will > brave the docs and ask if anything like this has been tested on Asenath. > The girls have had so many tests done and I have a pile over a foot high > full of their medical files, so I have no idea what was done and what > wasn't, especially when the docs order tons of stuff and just tell me what > they feel is important results. I am always amazed at how much some of you > guys seem to know so much about the test results and labs. Our docs don't > encourage me to study labs as they say we will just get upset about abnormal > labs that really aren't very important. I guess some of their patients must > do that, but I am not an over-reactor by any means. I may ask what a > certain test means, but not panic about an abnormal number. But if they > aren't important lab numbers, why were they noted as low or high and why > test for them in the first place??? Sorry about the soap box but this is a > frustrating issue for me as I feel our docs are just too busy to really > invest time into my girls. Dr. Whiteman is the only full-time geneticist at > Mayo now and I know I just can't be as open with the neurologist as she > doesn't like to be challenged or hear what I think. I have tried to speak > to Dr. Whiteman for over two months now with no response! I guess with > Zipporrah deteriorating, I am starting to lose my patience. I want a doctor > who will respond when I am worried by e-mail or phone call, or something! I > love Dr. Whiteman, but he is just way over booked now and puts so much into > his present patients there isn't any time to think of those who aren't in > front of him. > Thanks for your help in all this. Sorry for my frustration. > > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... > Zipporrah (11 mon.) 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) > > > RE: tachycaria > > > Both of my sons exhibit tachycardia. My oldest 5, will excedd 360 the > youngest 7 month only 290's. They will be cyanotic and pass out > eventually but otherwise will continue to act normally. The oldest > has had two abblations for the problem but yet it persists. Currently > takes inderal la for rate control. He is not diagnosed mito yet but > the younger is and he does not take any cardiac meds any more. He was > too sensitive to them. > > > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > Please contact mito-owner with any problems or questions. > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 I have 2 children with mito, dysautonomia one severe the other moderate, one has severe Cyclic vomiting, one has migraines and both have a IgG defiency. I have a couple of web sights that I think are great hope you enjoy reading them. Best of luck Sincerely, Donna www.dynakids.org www.dysautonomia-eduinfo.org www.ndrf.org > > From: Mito > Date: 2004/10/26 Tue PM 09:43:58 EDT > To: Mito > Subject: Digest Number 2870 > > > > There are 2 messages in this issue. > > Topics in this digest: > > 1. Re: Re: & Anne - CDG(transferrin) > > 2. RE: tachycaria > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Tue, 26 Oct 2004 12:17:36 -0500 > > Subject: Re: Re: & Anne - CDG(transferrin) > > To be honest sometimes I wonder what hasn't been checked on her. > Sometimes I feel we aren't getting the best care for her because the > neurologist gets stuck in these ruts of beliefs and doesn't want to look at > other possibilities. For the longest time she was stuck on the " Chicken pox > caused the Vasculitis " thing. Then when it was obvious it didn't she leaped > to other reasons that just haven't fit. Our Rheumotologist believes Mito > caused it. Does the CMG cause it, do you know? I am totally confused about > the CMG to be honest. I read tons on it but know I couldn't explain it to > anyone. The girls do have lots of the symptoms described, so I think I will > brave the docs and ask if anything like this has been tested on Asenath. > The girls have had so many tests done and I have a pile over a foot high > full of their medical files, so I have no idea what was done and what > wasn't, especially when the docs order tons of stuff and just tell me what > they feel is important results. I am always amazed at how much some of you > guys seem to know so much about the test results and labs. Our docs don't > encourage me to study labs as they say we will just get upset about abnormal > labs that really aren't very important. I guess some of their patients must > do that, but I am not an over-reactor by any means. I may ask what a > certain test means, but not panic about an abnormal number. But if they > aren't important lab numbers, why were they noted as low or high and why > test for them in the first place??? Sorry about the soap box but this is a > frustrating issue for me as I feel our docs are just too busy to really > invest time into my girls. Dr. Whiteman is the only full-time geneticist at > Mayo now and I know I just can't be as open with the neurologist as she > doesn't like to be challenged or hear what I think. I have tried to speak > to Dr. Whiteman for over two months now with no response! I guess with > Zipporrah deteriorating, I am starting to lose my patience. I want a doctor > who will respond when I am worried by e-mail or phone call, or something! I > love Dr. Whiteman, but he is just way over booked now and puts so much into > his present patients there isn't any time to think of those who aren't in > front of him. > Thanks for your help in all this. Sorry for my frustration. > > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... > Zipporrah (11 mon.) 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) > > > RE: tachycaria > > > Both of my sons exhibit tachycardia. My oldest 5, will excedd 360 the > youngest 7 month only 290's. They will be cyanotic and pass out > eventually but otherwise will continue to act normally. The oldest > has had two abblations for the problem but yet it persists. Currently > takes inderal la for rate control. He is not diagnosed mito yet but > the younger is and he does not take any cardiac meds any more. He was > too sensitive to them. > > > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > Please contact mito-owner with any problems or questions. > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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