Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 You're right, there hasn't been near the amount of postings as usual. I'm going through one of those "feeling sorry for myself" times. I've just been really worried about and Lindsey lately as their myoclonics seem to be really bad and for no obvious reasons. They aren't sick (thank goodness and knock on wood). I think all of the hype on this flu bug is scaring me to death. If all of these healthy children are getting it so bad, imagine what would happen to our kids. I also spoke on the phone last night with a woman from Fargo who called me about two months ago after spending 13 weeks in the epilepsy unit at St. Children's. (That's where we were with and Lindsey and got their diagnosis.) Her name is Nichole. Anyway, she has a daughter who is now 22 months, her name is . They admitted her to the unit at 19 months because of uncontrolled seizures. In 13 weeks time, she underwent two muscle biopsies as the first one, they didn't get enough muscle. Her body didn't heal well after the surgeries so therefore, she had open wounds for a few weeks. In addition while there, she went through 8 seizure med changes. Finally, they decided to try the ketogenic diet. That has helped control her seizures but now, she is throwing up as she can't handle the heavy cream she is supposed to eat. They found out she has Complex III and IV defects. If that wasn't bad enough, Nichole and her husband also have a baby who was born just before they admitted to the epilepsy unit. She has also started having seizures. She has spent a lot of time in the hospital also. A few weeks ago, both of the girls were in the epilepsy unit at the same time. There's a lot more to this story but, my heart is totally breaking for this family. Hopefully, while we are at St. next month for our EEG's, we will have a chance to meet in person as they are supposed to have an appointment that month. I have told her about the mito chat group but, she said she isn't ready to join yet. I hope she gets to the point soon that she feels she will be able to share with us all. Please pray for them all as I know they are really struggling right now. I hope all is continuing to go well at your house and everyone is remaining healthy. Take care and Happy Holidays! Kim - Mom to and Lindsey (2) Partial Complex I Where is everybody? Hey all, has the Christmas season bogged everybody down? It sure has been quiet lately. Hope your not overdoing it with the shopping and activities and all. Best wishes to all of you for a wonderful Holiday season! Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Darla, Up here in the middle of Minnesota, we have one child with chickenpox (she was vaccinated for it) & influenza, which she passed on to her Mom! Man I had forgotten what an evil virus the flu was. Yikes! Today is the first day since Saturday that I have been out of bed " doing something " . We have the pox watch on Red, we should expect them right around Christmas! Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 : I hope you are better. We were all vacinated for the flu virus but it is a different virus this year. The shot will only help a little bit; but a little bit is better than none at all. We have given Leah's teachers a red alert that as soon as kids are coming down with the flu at school to let us know. This year's flu for the first time has me worried and concerned for her sake. It hasn't really hit Appleton yet. Only a little bit but not full force. Get your rest and I hope Red doesn't get the pox over Christmas. Nerenhausen mom to Leah PINE LAKE TOWNSHIP wrote: > Darla, > Up here in the middle of Minnesota, we have one child with chickenpox > (she was vaccinated for it) & influenza, which she passed on to her Mom! > Man I had forgotten what an evil virus the flu was. Yikes! Today is the > first day since Saturday that I have been out of bed " doing something " . > We have the pox watch on Red, we should expect them right around > Christmas! > > Lee > Mom to Red, Ada & Angel Lily > > ________________________________________________________________ > The best thing to hit the internet in years - Juno SpeedBand! > Surf the web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 : I hope you are better. We were all vacinated for the flu virus but it is a different virus this year. The shot will only help a little bit; but a little bit is better than none at all. We have given Leah's teachers a red alert that as soon as kids are coming down with the flu at school to let us know. This year's flu for the first time has me worried and concerned for her sake. It hasn't really hit Appleton yet. Only a little bit but not full force. Get your rest and I hope Red doesn't get the pox over Christmas. Nerenhausen mom to Leah PINE LAKE TOWNSHIP wrote: > Darla, > Up here in the middle of Minnesota, we have one child with chickenpox > (she was vaccinated for it) & influenza, which she passed on to her Mom! > Man I had forgotten what an evil virus the flu was. Yikes! Today is the > first day since Saturday that I have been out of bed " doing something " . > We have the pox watch on Red, we should expect them right around > Christmas! > > Lee > Mom to Red, Ada & Angel Lily > > ________________________________________________________________ > The best thing to hit the internet in years - Juno SpeedBand! > Surf the web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Oh, ! You poor lady! Make sure and take it easy and try to recover from the flu. And chicken pox at the same time? You are certainly trying to overdue it! Hope you have a very Merry Christmas anyway. Darla: mommy to Asenath Re: Where is everybody? Darla,Up here in the middle of Minnesota, we have one child with chickenpox(she was vaccinated for it) & influenza, which she passed on to her Mom!Man I had forgotten what an evil virus the flu was. Yikes! Today is thefirst day since Saturday that I have been out of bed "doing something".We have the pox watch on Red, we should expect them right aroundChristmas! LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Oh, ! You poor lady! Make sure and take it easy and try to recover from the flu. And chicken pox at the same time? You are certainly trying to overdue it! Hope you have a very Merry Christmas anyway. Darla: mommy to Asenath Re: Where is everybody? Darla,Up here in the middle of Minnesota, we have one child with chickenpox(she was vaccinated for it) & influenza, which she passed on to her Mom!Man I had forgotten what an evil virus the flu was. Yikes! Today is thefirst day since Saturday that I have been out of bed "doing something".We have the pox watch on Red, we should expect them right aroundChristmas! LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Oh, ! You poor lady! Make sure and take it easy and try to recover from the flu. And chicken pox at the same time? You are certainly trying to overdue it! Hope you have a very Merry Christmas anyway. Darla: mommy to Asenath Re: Where is everybody? Darla,Up here in the middle of Minnesota, we have one child with chickenpox(she was vaccinated for it) & influenza, which she passed on to her Mom!Man I had forgotten what an evil virus the flu was. Yikes! Today is thefirst day since Saturday that I have been out of bed "doing something".We have the pox watch on Red, we should expect them right aroundChristmas! LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 It is only 10:10pm--Where is everyone? The last post was @8:42. Am I the only one still up? Quote Link to comment Share on other sites More sharing options...
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