Guest guest Posted November 20, 1999 Report Share Posted November 20, 1999 Kathy, Sorry I do not have any answers to your questions, but you say that this is his first illness since diagnosis. May I ask what tests were done and how long did it take you to get a diagnosis? Thanks for your info, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 1999 Report Share Posted November 20, 1999 A good way for me to monitor how sick my daughter is getting is I check her urine for ketones. The more ketones she spills the sicker she is. When she is spilling large or moderate amts I add heaping teaspoons of sugar to her pedialyte and that has kept her out of hospital many times with GI problems. Also push in as many fluids as you can and keep temperature down. It just burns up energy. You can purchase ketosticks over the counter at your local pharmacy. I just take one and mash it into a wet diaper. I'ts best to dip it in fresh urine. Good luck. Janelle McGuire Parent to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 1999 Report Share Posted November 20, 1999 A good way for me to monitor how sick my daughter is getting is I check her urine for ketones. The more ketones she spills the sicker she is. When she is spilling large or moderate amts I add heaping teaspoons of sugar to her pedialyte and that has kept her out of hospital many times with GI problems. Also push in as many fluids as you can and keep temperature down. It just burns up energy. You can purchase ketosticks over the counter at your local pharmacy. I just take one and mash it into a wet diaper. I'ts best to dip it in fresh urine. Good luck. Janelle McGuire Parent to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 1999 Report Share Posted November 20, 1999 In a message dated 11/19/99 5:24:01 PM Eastern Standard Time, KCorley309@... writes: << Okay . . . question is . . . Is there anything more we should be doing for him right now? This is first illness post-diagnosis (mito complex I and III). Do we need to run labs? Check for acidosis? Treat with bicarb or something? What other things should we be doing? Kathy Corley >> Kathy I am sure we would all agree that checking with your docs first is always the way to go------and I can only give you information that Dr Cohen gave me for . He told us whenever he is sick to increase fluids like sportade or gatorade because the increase electrolytes will help your child's strength in fighting an infection or illness. He also gave me specific instructions that whenever gets a temp of 101f he is to be hospitalized with 10% dextrose to give him another sugar boost , IV antibiotics if necessary to get to the source of the infection, and to have the lactic and pyruvic ratios checked as well as electrolytes and blood sugars regularly. he told me that kids with Mito can dehydrate very rapidly and maintaining proper levels of electrolytes is very important. Oh ya one more thing he also suggests that you use motrin to reduce fever instead of tylenol because the tylenol causes too many free radicals in the mitochondria which is compares to smog in the air. If a person already has a reduced amount of properly functioning mitochondria then you want to maximize the ones that work well. I hope this helps, ---------- and Complex II-III I remember the first time was sick post dx and I was a basket case and without experienced parents to talk to I would have gone nuts! I am fortunate to have 6 right in my home town! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 1999 Report Share Posted November 21, 1999 In a message dated 11/21/99 2:29:40 PM Eastern Standard Time, Goldenfam4@... writes: << Kathy I am sure we would all agree that checking with your docs first is always the way to go------and I can only give you information that Dr Cohen gave me for . >> Hi, - Thanks for the information! I took to see the pediatrician before I posted; it's just that she is as much a novice at the mito stuff as I am (or maybe even moreso according to her . . . I have read more.) We saw Dr. Cohen recently, but as much information as I left with, I forgot to talk about acute illness protocols. Actually, though, is doing much better. He still has a little diarrhea, but is not acting sick at all . . . running around and laughing and playing like normal! What a relief! Still a little disconcerting to see him so out one day and then fine the next. I think (as suggested by several on the list) that his blood sugar must have taken a nose dive. He wasn't feverish or even acting all that sick. But he was not taking really any food by mouth, and we ended up going a little longer than normal before I bolus fed him through his tube . . . between getting over the stomach bug, an ear infection that was still raging, and not taking in as much in total calories over the couple of days prior, I think he just crashed. I will be more careful next time and I will know when to ask the ped to do labs and IV fluids!!!! I have been mixing a little cornstarch in his feedings and he is bouncing back nicely! Thanks to everyone for the help! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 1999 Report Share Posted November 21, 1999 In a message dated 11/21/99 2:29:40 PM Eastern Standard Time, Goldenfam4@... writes: << Kathy I am sure we would all agree that checking with your docs first is always the way to go------and I can only give you information that Dr Cohen gave me for . >> Hi, - Thanks for the information! I took to see the pediatrician before I posted; it's just that she is as much a novice at the mito stuff as I am (or maybe even moreso according to her . . . I have read more.) We saw Dr. Cohen recently, but as much information as I left with, I forgot to talk about acute illness protocols. Actually, though, is doing much better. He still has a little diarrhea, but is not acting sick at all . . . running around and laughing and playing like normal! What a relief! Still a little disconcerting to see him so out one day and then fine the next. I think (as suggested by several on the list) that his blood sugar must have taken a nose dive. He wasn't feverish or even acting all that sick. But he was not taking really any food by mouth, and we ended up going a little longer than normal before I bolus fed him through his tube . . . between getting over the stomach bug, an ear infection that was still raging, and not taking in as much in total calories over the couple of days prior, I think he just crashed. I will be more careful next time and I will know when to ask the ped to do labs and IV fluids!!!! I have been mixing a little cornstarch in his feedings and he is bouncing back nicely! Thanks to everyone for the help! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 1999 Report Share Posted November 22, 1999 Kathy, One more thing. Where do you live? Did you have to travel far to this hospital in Atlanta? Thanks, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 1999 Report Share Posted November 22, 1999 In a message dated 11/21/99 9:05:20 PM Eastern Standard Time, blhoward@... writes: << I'm glad to hear that is doing so much better. Could you give me some background info on him. What made you go for all of the testing? How old is ? From your posts it seems that he is doing well developmentally. You mention his running around and playing now that he is felling better. Does this mean he's is not being affected developmentally by this mitochondrial problem? >> Hi, Barbara - 's first big issue was failure to thrive. Though his weight is fine now with nutritional support by g-tube, he continues to have growth issues . . . he is extremely short stature. And though he is mobile, his motor skills are delayed, just not so severely as some. Early on, had noticeable muscle tone issues . . . high tone in some places, low in others. Currently, 's muscle tone appears normal upon clinical examination, but microscopically he has signs of degeneration. is testing within normal limits on cognitive, social and language skills. The reason we opted for the testing was the terrible feeding problems, growth issues, GI issues (dysmotility/reflux), seizures, acquired microcephaly, and the fact that he had what we believe was a stroke-like episode leaving hemiparesis for weeks (actually months) after it occurred. also has some mild anomalies . . . he has a very mild hypospadias, and there is question as to whether he has hyperteliorism (his eyes are normally spaced for his age, but maybe a little on the widely spaced side considering his head circumference.) Hope that this helps . . . and that you find the answers you are looking for! Kathy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.