Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Funny, we were at Dr. Cureg's office twice this week. Luke was in for a flu shot (unfortunately they later realized he needs his third Hep. B so back we go tomorrow-that will # 3 visit for us this week too. LOL) and Asenath and Zipporrah had their 4th and 1st year check-ups yesterday. We go back on the 10th for Kezia and Marquis' yearly check-ups too. Dr. Cureg noticed liquid collecting in Zipporrah's ears and wondered if she was battling something, but she isn't coughing or sneezing, so guess it must be a minor viral attack. She is concerned about Zipporrah's continued ischemic atacks and SLE's as well as the fatigue issues like us. But what to do??? No answers there. Thanks for the note. Sorry to hear your kids are not doing well. Maybe the same problems we are dealing with in some of us here. I have a soar throat-feels like a frog sitting in my throat. Headache, ear ache, etc... Hope they get well soon. I haven't read your seizure posting yet. Hope things aren't going worse in that area as well. 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) 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 Wishing you the best of luck with the diet plan. I sure hope you are able to get it to stop those stupid seizures! See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) 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) 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 Wishing you the best of luck with the diet plan. I sure hope you are able to get it to stop those stupid seizures! See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) 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) 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 January 24, 2005 Report Share Posted January 24, 2005 Bummer! Isn't that so frustrating when you KNOW the others are going to get sick because of the constant coughing, sneezing, the " oops they got their sippy-cup or med giver " type issues. It seems as though tons of people here in Des Moines are sick and the viral attacks seem pretty bad. hope they have a short-lived episode and that NOONE ends up in the hospital. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Zipporrah has pneumonia > > > > > > I had to take Zipporrah and our new foster son to ER last night due > > to both of them going downhill with their excessive phlegm and lung > > issues > > and as expected Zipporrah and he have pneumonia. Zipporrah also has > > terrible double ear infections. The ER staff advised us to try keeping > > them home as the hospital was full of RSV in the children's section > > presently and wondered if it would actually hurt them, especially > > Zipporrah. They gave them both Rosephen (spelling?) shots and advised > > us > > to go to the docs again today to keep a very close eye on them. I have > > been doing neb treatments every 4 hours on Zipporrah for the last > > several > > days and began to do so with Joey as well the other day as he just > > started > > going downhill really yesterday. This is a nasty bug and wish it on > > noone! We are doing ok though even though the virus hit at a bad time > > dealing with two new ones in the home. I am really hoping the little > > girl, , doesn't also get ill. Asenath also has the bug and was > > worse a couple of days ago and we are hoping she keeps fighting it of > > well. Zipporrah has had a small right-sided hit already, but no major > > setbacks thus far. We would appreciate your prayers. > > > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to > > see a photo look into what Mito looks like > > Darla: mommy to > > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > > bladder issues, wheelchair for distances, eye issues, autistic > > behaviors, > > gastric emptying issues... > > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, > > GERD, > > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > > hypertonicity, migraines, possible seizures, dumping syndrome, iron > > deficiency, ... > > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > > Please contact mito-owner with any problems or > > questions. > > Quote Link to comment Share on other sites More sharing options...
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