Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been "tested" and has "qualified" for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been "tested" and has "qualified" for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi My Name is Ange and my daughter is 5 she has been going to public school for 2 years now and she has complex 1, seizures, failure to thrive 32lbs, development mental delays feeding tube, OCD, and other issues. I have a special education plan made up every year has a folder with all her medical needs and phone number anyone who is with her takes this folder teacher, PT, OT, Nurse. We have set a plan up that the temperature has to be warm in the winter can not go outside if under 60 degrees and in the summer the room must be kept cold to 70 degrees there is a therm in the class. She is allowed to eat and drink when she feels the need (fasting is bad). Anyone with any illness I am to be notified what it is and when exposed. If there is a break out of chicken pox in the school is to stay home during the incibation period so she does not get exposed. The nurse checks to make sure the room is Adequate playing area etc so ashley does not hurt herself in case of a seizure. would not have it any other way she can't wait to go to school each day and misses it when there is a day off or break. She has not gotten sick with the above protocol since she has attended I would say go for it give them life. It can only make them better and easier to deal with their lives. Hope this helps sorry for rambling. Ange -------------- Original message -------------- Hello to all,I hope this message finds everyone healthy and happy and in good holiday spirits!I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway...We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been "tested" and has "qualified" for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions).HELP!! Please let me know your thoughts...thank you so much in advance!Kris.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi My Name is Ange and my daughter is 5 she has been going to public school for 2 years now and she has complex 1, seizures, failure to thrive 32lbs, development mental delays feeding tube, OCD, and other issues. I have a special education plan made up every year has a folder with all her medical needs and phone number anyone who is with her takes this folder teacher, PT, OT, Nurse. We have set a plan up that the temperature has to be warm in the winter can not go outside if under 60 degrees and in the summer the room must be kept cold to 70 degrees there is a therm in the class. She is allowed to eat and drink when she feels the need (fasting is bad). Anyone with any illness I am to be notified what it is and when exposed. If there is a break out of chicken pox in the school is to stay home during the incibation period so she does not get exposed. The nurse checks to make sure the room is Adequate playing area etc so ashley does not hurt herself in case of a seizure. would not have it any other way she can't wait to go to school each day and misses it when there is a day off or break. She has not gotten sick with the above protocol since she has attended I would say go for it give them life. It can only make them better and easier to deal with their lives. Hope this helps sorry for rambling. Ange -------------- Original message -------------- Hello to all,I hope this message finds everyone healthy and happy and in good holiday spirits!I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway...We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been "tested" and has "qualified" for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions).HELP!! Please let me know your thoughts...thank you so much in advance!Kris.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi, I don't have any advice about schools but I just had to tell you how CUTE she is! That picture is adorable. Anne R - mom to Asher (mito, Complex III defect, and possible complex I defect) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi, I don't have any advice about schools but I just had to tell you how CUTE she is! That picture is adorable. Anne R - mom to Asher (mito, Complex III defect, and possible complex I defect) Quote Link to comment Share on other sites More sharing options...
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