Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Please pray for Zipporrah as she is AGAIN getting sick. She was starting to get better from the last virus and her lungs were clear for two days so as told, I took her off them. Then last night I noticed her voice was hoarse and she had tachycardia, fast respirations, and more gunky. This morning her temperature has been staying around 101.1 degrees (Her norm. is 95-96 degrees.) She is very crabby and sleepy. I knew this was coming as a very foolish woman placed her finger in Porrah's mouth on Sunday. (Can you imagine how many peoples' hand she probably shook!) I didn't have a chance to stop her, it happened so fast. Now she is getting sick again. Dr. Whiteman is still working on the protocol so I sure hope she improves without needing help. The NG-tube will help but she has diarrhea and is refluxing several times a day so not good there. I would appreciate your prayers for her. Also, please pray for Luke (almost 16) as yesterday when I had my routine eye examination I mentioned Luke's problems and since Luke was with us the doc was curious and examined him for free. He could tell Luke really has problems neurological in nature. He has 20/50 (or 50/20- not sure if that matters?) and nothing the doc did could improve the vision. He could tell Luke has the blind spot when looking up and that his peripheral vision is also not good. He said it would be amazing if Luke could pass a driver's license test. Of course that really caused Luke to panic! The eye doctor is setting up a neuro-ophthalmology appointment in Iowa City for Luke. He said they may need to use newer technology to help him see better. We knew something was wrong, but this is definitely of concern! Could this be progressive in nature and has anyone else had similar eye problems? He was so pleased that Dr. Whiteman's appointment went well and his labs were good. Of course, he wasn't ill..., neither was Leah when her labs were done, and I KNOW they both have quite a few Mito symptoms. Another question... Do you have any kids with Mito that have good or even great muscle tone? Luke has large muscles from working out. What he battles is needing extra sleep, sensory issues to do with feeling things and temperature issues, hypoglycemia, migraines, eye issues, etc...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... Luke, Leah, , Isaac, Tirzah, Kezia, and MarquisGet 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 8, 2004 Report Share Posted April 8, 2004 Darla, I will continue pray for Porrah and all of your kiddos. Evan was constantly sick as an infant even though his mito symptoms didn't really develop until his 4th birthday. It turns out that he has low natural killer cell function (NK cells fight off viruses). I do think that immune system problems are sometimes seen in kids with mito. Has Porrah ever been seen by an immunologist at Mayo? I am sorry to hear about Luke's vision problems. Evan had some significant eye issues, but since starting on the mito cocktail things have improved somewhat. His color vision improved and his ptosis is much better unless he is fatigued. Colin has problems with dilated pupils and tremors in visually pursuit. He loves sports, but like Luke he has hypoglycemia and often has to deal with the consequences of getting too much exercise. I have noticed that when he overdoes things, he has a lot more sleep myoclonus and asthma type symptoms. Did Luke have any retinal abnormalities? I know that retinitis pigmentosa can occur in people with mito. Take care and God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Darla, I will continue pray for Porrah and all of your kiddos. Evan was constantly sick as an infant even though his mito symptoms didn't really develop until his 4th birthday. It turns out that he has low natural killer cell function (NK cells fight off viruses). I do think that immune system problems are sometimes seen in kids with mito. Has Porrah ever been seen by an immunologist at Mayo? I am sorry to hear about Luke's vision problems. Evan had some significant eye issues, but since starting on the mito cocktail things have improved somewhat. His color vision improved and his ptosis is much better unless he is fatigued. Colin has problems with dilated pupils and tremors in visually pursuit. He loves sports, but like Luke he has hypoglycemia and often has to deal with the consequences of getting too much exercise. I have noticed that when he overdoes things, he has a lot more sleep myoclonus and asthma type symptoms. Did Luke have any retinal abnormalities? I know that retinitis pigmentosa can occur in people with mito. Take care and God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Darla, I will continue pray for Porrah and all of your kiddos. Evan was constantly sick as an infant even though his mito symptoms didn't really develop until his 4th birthday. It turns out that he has low natural killer cell function (NK cells fight off viruses). I do think that immune system problems are sometimes seen in kids with mito. Has Porrah ever been seen by an immunologist at Mayo? I am sorry to hear about Luke's vision problems. Evan had some significant eye issues, but since starting on the mito cocktail things have improved somewhat. His color vision improved and his ptosis is much better unless he is fatigued. Colin has problems with dilated pupils and tremors in visually pursuit. He loves sports, but like Luke he has hypoglycemia and often has to deal with the consequences of getting too much exercise. I have noticed that when he overdoes things, he has a lot more sleep myoclonus and asthma type symptoms. Did Luke have any retinal abnormalities? I know that retinitis pigmentosa can occur in people with mito. Take care and God bless, Quote Link to comment Share on other sites More sharing options...
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