Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 I just noticed in a post you made earlier today, that Zipporrah had her first birthday yesterday. It seems like just a few days ago you announced her birth, wow how time flies. I hope you all had a great time celebrating her special day. Happy Birthday Zipporah!!!! Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Hey Darla. Sorry to hear you all are struggling. I pray Zipporah is just going through a rough patch and will bounce back soon. Glad to hear Asenath is not getting it too bad and I hope you are finding time to rest! We've been struggling with illness here also. I've been into Dr. Cureg's office three times in the last week...first for the twins' 3 year well child visit. Everything was fine there. Yesterday, I took my 7 year old in to find out she has an ear infection, tonsilitis and a horrible sore in her mouth Dr. Cureg said is comparable to hand, foot, mouth disease in smaller kids. I was so excited to get that news...not! Of course when I got back home I noticed and Lindsey walking around the house holding their ears. So, back we went today and sure enough they both have ear infections and upper respiratory infections. I just love this time of year!!!! So, I have three of the four kiddos on amoxicillin. Lets hope this nasty crud goes away soon and everyone will be feeling better soon! Kim Re: Darla > > > > Yeah, they don't seem as talkative as we are I'm glad to hear that > > your kids are enjoying corresponding with mine. I'll see if I can get > > Kelsey to write. > > > > How are all of your kids doing? > > > > and Kelsey have both had sore throats with other symptoms for > > a few days. I'm afraid Sheldon is getting it now, he seems to be > > getting sick. Doesn't seem too bad yet though. We reduced his EI > > services starting on Monday, we're waiting to see how that goes. > > Still have to figure out goals for everyone to be working on that > > will strike a balance between making progress and not pushing him too > > much. > > > > > > > It seems our kids are having fun writing e-mails and letters to one > > >another. Glad to see it. The group, however, seems to not be taking > > >off > > >thus far. Too many shy kids it seems. My kids have written to a few > > >others > > >through the mail or e-mail as well and it has been a neat way to connect > > >the > > >kids. Even Luke, my 16 year old, has been writing back and forth with > > >your > > >oldest one. Just wanted to let you know my kids are enjoying it. > > > > > >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) > > > > > > > > >Please contact mito-owner with any problems or questions. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Thanks Darla. I started the diet yesterday. Thought I would try it out before putting the girls on it. My body doesn't know what the heck is happening!!!! I'm tired and have a horrible headache. I stopped drinking caffeine also so that isn't helping matters any. I think when it comes time to put the girls on it, I will slowly lower their sugar and carb intake beforehand. I don't want to throw them into it cold turkey (like I did myself...) Good luck at Mayo. Hopefully the weather will cooperate for you guys. Give us an update when you can. Kim - Mom to and Lindsey (3) Partial Complex I Re: seizures help/ Dawn & kim > > > Dawn, Chelsea has been on Keppra for 2+ yrs as well. It has been a good > drug for her with little side effects. She is on the highest dose for her > weight, and had to recently start Lamictal as well, but her seizures are > under good control. > I wasn't aware that any particular seizure type is associated with mito, > I assumed any kind of seizures could happen. Since Chelsea has Rett's, > this is probably moot, but she has had all kinds of seizures, including > absence. She has a strong tendency toward convulsive seizures, but > progressed to that point. > I hope Keppra works for Molly. What do her seizures look like? > > > > In a message dated 12/21/2004 7:48:20 P.M. Eastern Standard Time, > knovy4@... writes: > They are on a total of 1500mg per day. (They weigh 30 pounds.) > Kim, this is the dose Chelsea is on, she weighs 60lbs, so 2wice as much > as your kiddos. I was told this was the max dose for her weight and going > higher was probably not going to do any better, so she was put on > Lamictal. What have you been told is the max dose! > Thanks! > > Sorry for such a late response, got behind on my mail, Like I do every > Christmas! > > e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Thanks Darla. I started the diet yesterday. Thought I would try it out before putting the girls on it. My body doesn't know what the heck is happening!!!! I'm tired and have a horrible headache. I stopped drinking caffeine also so that isn't helping matters any. I think when it comes time to put the girls on it, I will slowly lower their sugar and carb intake beforehand. I don't want to throw them into it cold turkey (like I did myself...) Good luck at Mayo. Hopefully the weather will cooperate for you guys. Give us an update when you can. Kim - Mom to and Lindsey (3) Partial Complex I Re: seizures help/ Dawn & kim > > > Dawn, Chelsea has been on Keppra for 2+ yrs as well. It has been a good > drug for her with little side effects. She is on the highest dose for her > weight, and had to recently start Lamictal as well, but her seizures are > under good control. > I wasn't aware that any particular seizure type is associated with mito, > I assumed any kind of seizures could happen. Since Chelsea has Rett's, > this is probably moot, but she has had all kinds of seizures, including > absence. She has a strong tendency toward convulsive seizures, but > progressed to that point. > I hope Keppra works for Molly. What do her seizures look like? > > > > In a message dated 12/21/2004 7:48:20 P.M. Eastern Standard Time, > knovy4@... writes: > They are on a total of 1500mg per day. (They weigh 30 pounds.) > Kim, this is the dose Chelsea is on, she weighs 60lbs, so 2wice as much > as your kiddos. I was told this was the max dose for her weight and going > higher was probably not going to do any better, so she was put on > Lamictal. What have you been told is the max dose! > Thanks! > > Sorry for such a late response, got behind on my mail, Like I do every > Christmas! > > e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
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