Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 I hope that someone can give me some advice. My daughter, has had this viral infection for over a week and a half. She has been very unusual... low grade temp. ( and she never runs a temp), tired, last night she threw up and her blood counts have been very off. I have a great doctor who deals mostly with her hematology issues but also is her palliative care doctor, but I can't get anyone to understand that what is normal for any other child is not normal for her. She can't have a temp. or it could cause brain damage and that I just know that something is not right. How do you get a doctor to listen to you just because of motherly instincts. I am right about 97% of the time with only a few false alarms. Her pulse rate is usually about 120-130 and last night it was about 80 and her temp went down to 95.2. The hard part of all of this is, they ask how she is acting... she is acting relatively fine, but she has been through so much in her short life that she seems to have a high tolerance for pain and discomfort and sometimes by the time she " acts " like something is wrong, she is really ill. How do you find the happy medium between acting and overeacting? Thanks for the help! Dawn, Mom to Complex III/ IV Bone Marrow Failure Glutaric Aciduria III Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 All of these issues sound alot like she has Autonomic Dysfunction. Meaning, like me and my son, we don't develop a temp when sick, alot of the times it goes down. Therefore, we have that problem where doctors don't take us seriously. I always take the pamphlet from UMDF, or newsletter I mean, that discussed handling acute care in patients with Mitochondrial Disease. It tells doctors what to watch for and labs to draw and to not let them get dehydrated, etc. After the ER staff reads this they always seem to respond better. You might research or discuss with the doctors involved Dysautonomia so that when she is ill, and she doesn't have a high temp, or her body doesn't respond like the rest of ours would, they would understand why and know to treat her illness...not symptoms that " typical " people have. You might also go to the UMDF archives and get this newsletter to share with the treating doctors. Hope this helps and I am praying for you and your family. Sincerely, Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Dawn, Who diagnosed your daughter with GAIII? I am very interested in hearing more about her. Also, she and my son, Caden (GAII) seem to have much in common. He has been having changes in his heart rate lately. (bradycardia). Has had an echo? Caden had an echo on Jan 9th which was normal and on Feb 5th, he had another which showed that his right ventricle had dilated and the left one somewhat. He gets another March 7th. Caden has a very high pain tolerance as well! He also will push himself and until he becomes very ill, you won't know anything is wrong with him (unless you are his mother), Mom's can sense even the slightest change in personality or physical change. As a matter of a fact Caden developed a fever this after noon. It's fluctuating between 99.7-101. Very strange that it goes up and down. Actually, his heart rate is running high at 160 (sleeping). His ususal sleep numbers are 80-100. His sleep numbers were dropping to 50 just recently! Very scary. Right now, we are using an event recorder. It's about the size of a pager and we just put it to his chest when he is symptomatic, to make an ECG recording. You then send it over the phone to a cardiac monitoring center who has 24 hr access to his cardiologist. So far, he hasn't had any low heart beats since we got it. We keep it till March 21st. You can keep it for 1month. Also, his rhythm has been normal, even though his holter monitor that he wore for 24 hrs showed some low and high heart beats. So, I am not sure where all of this is going. We just don't want his ventricles enlarging any more otherwise he may need medication. Right now the function is normal. Caden also developed a rash last Monday, on his chest, belly and back. Small pinkish-red dots and some are skin colored but raised. Just today, we noticed that his hands and feet are peeling horribly! What could this be??? Now, he got a fever this evening with severe leg pain. His temp is only 99.7 right now and still having a racing heart beat. Usually, it takes a high temp for his pulse to remain that high sleeping. Who does your daughter see for GAIII? Some dr's won't say that there is a GAIII. Please feel free to email me any time! I look forward to hearing more from you. Krystena sCaden s 4 yrs GAIIWarren 7 yrs unaffected 10 yrs unaffectedBaby Boy s (due 6-13-03) ? Viral infection I hope that someone can give me some advice. My daughter, has had this viral infection for over a week and a half. She has been very unusual... low grade temp. ( and she never runs a temp), tired, last night she threw up and her blood counts have been very off. I have a great doctor who deals mostly with her hematology issues but also is her palliative care doctor, but I can't get anyone to understand that what is normal for any other child is not normal for her. She can't have a temp. or it could cause brain damage and that I just know that something is not right. How do you get a doctor to listen to you just because of motherly instincts. I am right about 97% of the time with only a few false alarms. Her pulse rate is usually about 120-130 and last night it was about 80 and her temp went down to 95.2. The hard part of all of this is, they ask how she is acting... she is acting relatively fine, but she has been through so much in her short life that she seems to have a high tolerance for pain and discomfort and sometimes by the time she "acts" like something is wrong, she is really ill. How do you find the happy medium between acting and overeacting? Thanks for the help! Dawn, Mom to Complex III/ IV Bone Marrow Failure Glutaric Aciduria III Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 .. Her pulse rate is usually about 120-130 and last night it was about 80 and her temp went down to 95.2. The hard part of all of this is, they ask how she is acting... she is acting relatively fine Dawn, this very well might be an autonomic issue...my andrew even gets down in the 94s now a days. I know the frustration b/c they are going to say that the normal pulse rate for a child is 60-90 so they are going to be happy about that but you know that is not her norm. Unfortunately with the dysautonomia, there is nothing they can do to correct the brain and make it regulate things more. We have it affecting just about all the autonomic stuff except blinking. also, would you mind sharing some info on palliative/hospice care with me privately? My email address is VisibleWorship@... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 The newsletter I was speaking of is the Spring of is the winter of 2000 newsletter. I think that is it at least. It is titled " Management Stategy in Acute Care for Patients with Mitochondrial Cytopathy " . Hope this helps! Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Heidi, Which news letter is it with the article? Thanks, Horsley Re: Viral infection All of these issues sound alot like she has Autonomic Dysfunction. Meaning, like me and my son, we don't develop a temp when sick, alot of the times it goes down. Therefore, we have that problem where doctors don't take us seriously. I always take the pamphlet from UMDF, or newsletter I mean, that discussed handling acute care in patients with Mitochondrial Disease. It tells doctors what to watch for and labs to draw and to not let them get dehydrated, etc. After the ER staff reads this they always seem to respond better. You might research or discuss with the doctors involved Dysautonomia so that when she is ill, and she doesn't have a high temp, or her body doesn't respond like the rest of ours would, they would understand why and know to treat her illness...not symptoms that "typical" people have. You might also go to the UMDF archives and get this newsletter to share with the treating doctors. Hope this helps and I am praying for you and your family.Sincerely,Heidi HarmonPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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