Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Thanks for asking. Everything went well. The girls were admitted Tues. night for IV fluids. The MRI/MRS was yesterday and they went well. They used gas to put the girls to sleep and they came out of anesthesia very well. Lindsey was a little more tired than but, woke up quickly once she got back to her room. We met with Dr. Whiteman today and everything came back pretty normal on the scans. Each girl had a little something irregular but, no brain damage or anything alarming. We are very relieved that they came back okay. We had a long talk with Dr. Whiteman about the lack of seizure control. The girls are doing great metabolically and have been so for the last 9 months. We are having a hard time figuring out why they keep throwing new seizure types at us and continue to have numerous seizures daily. He was so nice to say he is as frustrated as we are in the seizure activity but, reminded us we need to keep trying new meds to hopefully find the magic one (or two, three or four...) He is referring us to a developmental pediatrician at Mayo. We shared how the girls' development has slowed the last year and how the girls are having some behavioral issues. Lindsey has also been standing on her head all the time. She also puts her head on the floor and pushes herself across the room. She also walks around with her hand on her head a lot. Our OT thought maybe it was a sensory issue. I asked Dr, Whiteman about this and he didn't know why she would be doing that. That's when he spoke of the dev. ped. You're right about St. 's hospital and their playroom. The girls had so much fun there, they didn't want to leave. We took them away screaming! Never in my life did I think they would want to stay at the hospital!! So, you met with Heidi today? She is very nice. We've only been with her twice now but, I think she will be a good fit for the girls. How is Zipporah doing? I hope everything is going better. Mason came down with a horrible cough earlier this week but, is doing better now. I guess it's that time of year again... Take care! Kim Kim Novy I was talking with our OT replacement which happens to be your girls' therapist and she was talking about having another Mito family in her case load. After she said you were going to Mayo it clicked in my brain that you were going to do the brain scans! How did they go? Sorry I haven't called you but it has been pretty busy over here lately since Zipporrah wasn't feeling well. Hope all went well. Let me know. You can call me if you would rather do so. :)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, SID, GERD, 100% G-tube fed, asthma, trach issues, 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 October 7, 2004 Report Share Posted October 7, 2004 Glad to hear the gas anesthesia wasn't a problem as that is what really does not set well with Asenath. As for the seizures, Heidi (She is great. Asenath fell in love with her immediately.) said she noticed a ton of them during therapy and I was sad to hear how they seem to be increasing or at least not lessening. It would be hard to watch them struggle like that so often and not be able to stop it. I am sure it is not helping them to grow developmentally as they normally would. Asenath is developmentally one-two years behind in speech, cognitively, physically, and occupationally. It is hard to see her struggle to do what comes easy for Kezia (almost 4) and Marquis (almost 3). The older they become the farther behind Asenath seems. The other two are starting to play more and more together and without her because her interests are in younger things or in less exhausting tasks/games. On the issue with the holding her head all the time, does she seem in pain? The reason I ask is because Asenath and Zipporrah always hold their heads and do strange things with them when their migraines are happening. ON THE OTHER HAND, sensory issues may be an issue as our girls also often will rub certain areas of their body/head, especially around strokes, and the docs, therapist, and we feel that they are probably feeling some sort of numbness or prickly/tingling. I often get a numb and prickly face when dealing with Mito symptoms and Luke has had issues too. But mostly we have seen Asenath staring at her arms or legs and rubbing them and intensely examining them as she moves them around as if they were strange or feeling weird and Zipporrah has many times rubbed her face and smacked at it strangely. We know both of our girls deal with a lot of sensory integration dysfunction so it is expected. I am glad St. 's was fun for the girls, especially with having to deal with IV's and anesthesia, it is nice for them to have some fun. Sorry it was so hard for them to leave but at least you know they won't mind going again in the future if you need to. Asenath calls it " her " hospital and really likes going there even though she knows it means some unpleasant things will happen. Glad you are home and the girls are doing well thus far not catching the virus. Glad to hear your son is feeling better. I hate fall and winter for the viral attacks and all that goes with 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, SID, GERD, 100% G-tube fed, asthma, trach issues, 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) Kim Novy I was talking with our OT replacement which happens to be your girls' therapist and she was talking about having another Mito family in her case load. After she said you were going to Mayo it clicked in my brain that you were going to do the brain scans! How did they go? Sorry I haven't called you but it has been pretty busy over here lately since Zipporrah wasn't feeling well. Hope all went well. Let me know. You can call me if you would rather do so. 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, SID, GERD, 100% G-tube fed, asthma, trach issues, 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 October 8, 2004 Report Share Posted October 8, 2004 Yes, the first time Heidi came, Lindsey was having a horrible day and seizing uncontrollably. We have some days here and there that are very difficult. The sad part is there is no rhyme or reason behind the bad days. They haven't been sick, they are metabolically doing great. I just don't understand. It's frustrating beyond belief. I told Dr. Whiteman yesterday that their development slowed down after starting the Klonipin back in January. Our new neurologist is wanting to take them off of it so I hope by doing so, they will start developing better again. They have both tested about a year behind both speech and occupationally too. A year ago, they were right on. I guess that's the nature of the beast though, huh? I've often wondered how Lindsey feels when she starts doing her " head exercises. " She doesn't seem to be in a any pain. I just wonder if it does feel funny. Sometimes she does rub her hands together too. Heidi said she is enjoys working with sensory issues so I hope she can find something to help us out. Hope all is well at your house. Kim Kim Novy > > > I was talking with our OT replacement which happens to be your girls' > therapist and she was talking about having another Mito family in her case > load. After she said you were going to Mayo it clicked in my brain that you > were going to do the brain scans! How did they go? Sorry I haven't called > you but it has been pretty busy over here lately since Zipporrah wasn't > feeling well. Hope all went well. Let me know. You can call me if you > would rather do so. > > > 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, SID, GERD, 100% G-tube fed, asthma, > trach issues, 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...
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