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Re: Joining again after some time away

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Welcome back to the group. I have been with this group since last September with m daughter Asenath who is 3 1/2 years old and has an unknown Mito (possible MNGIE) and vasculitis of the brain. This group truly is a blessing and you couldn't be in a better place. Great having you back! Darla: mommy to Asenath Joining again after some time away Hi all, I am Alison mom to 5, and 3 other children. has an undiagnosed progressive neuro muscular disease. I was apart of this group a while ago and left for various reasons. remains undiagnosed. Alot of his symptoms parallel those of a mito disease,however, none of his testing confirms such. This past year his health has really deteriorated. He has seizures, dev. delays, cyclic vomiting, autonomic dysfunction, bladder retention etc. The autonomic dysfunction has gotten much worse this year. He has had 10 hospital admissions for IV's for rehydration due to the autonomic issues which contribute to his cyclic vomiting. He has a foley catheter in his bladder about 50 % of the time, he is 75% g tube fed, he had a VAD placed on Monday for hydration etc. He is having a nissen fundoplication done in January or February. We are going on a Wish trip to Disney world in the next 2 months. I look forward to participating with you all again. I hope everyone had a good week and enjoyed whatever seasonal celebrations you were a part of. AlisonPlease contact mito-owner with any problems or questions.

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Welcome back to the group. I have been with this group since last September with m daughter Asenath who is 3 1/2 years old and has an unknown Mito (possible MNGIE) and vasculitis of the brain. This group truly is a blessing and you couldn't be in a better place. Great having you back! Darla: mommy to Asenath Joining again after some time away Hi all, I am Alison mom to 5, and 3 other children. has an undiagnosed progressive neuro muscular disease. I was apart of this group a while ago and left for various reasons. remains undiagnosed. Alot of his symptoms parallel those of a mito disease,however, none of his testing confirms such. This past year his health has really deteriorated. He has seizures, dev. delays, cyclic vomiting, autonomic dysfunction, bladder retention etc. The autonomic dysfunction has gotten much worse this year. He has had 10 hospital admissions for IV's for rehydration due to the autonomic issues which contribute to his cyclic vomiting. He has a foley catheter in his bladder about 50 % of the time, he is 75% g tube fed, he had a VAD placed on Monday for hydration etc. He is having a nissen fundoplication done in January or February. We are going on a Wish trip to Disney world in the next 2 months. I look forward to participating with you all again. I hope everyone had a good week and enjoyed whatever seasonal celebrations you were a part of. AlisonPlease contact mito-owner with any problems or questions.

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Posted
Posted

Welcome back to the group. I have been with this group since last September with m daughter Asenath who is 3 1/2 years old and has an unknown Mito (possible MNGIE) and vasculitis of the brain. This group truly is a blessing and you couldn't be in a better place. Great having you back! Darla: mommy to Asenath Joining again after some time away Hi all, I am Alison mom to 5, and 3 other children. has an undiagnosed progressive neuro muscular disease. I was apart of this group a while ago and left for various reasons. remains undiagnosed. Alot of his symptoms parallel those of a mito disease,however, none of his testing confirms such. This past year his health has really deteriorated. He has seizures, dev. delays, cyclic vomiting, autonomic dysfunction, bladder retention etc. The autonomic dysfunction has gotten much worse this year. He has had 10 hospital admissions for IV's for rehydration due to the autonomic issues which contribute to his cyclic vomiting. He has a foley catheter in his bladder about 50 % of the time, he is 75% g tube fed, he had a VAD placed on Monday for hydration etc. He is having a nissen fundoplication done in January or February. We are going on a Wish trip to Disney world in the next 2 months. I look forward to participating with you all again. I hope everyone had a good week and enjoyed whatever seasonal celebrations you were a part of. AlisonPlease contact mito-owner with any problems or questions.

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Hey Alison, welcome back! I have also been away for some time. Our dd#1 has

Mitochondrial Encephalomyopathy and our dd#2 has Aicardi syndrome. We also

have a 3rd dd who is healthy. We have been to Disney World 8 times this

year. Our favorite family vacation spot. Wonderful for the girls. If you

have any questions or if I can help in any way with 's wish trip

please let me know. DD#1 had her wish trip in 2000 to Disney World and we

stayed at Give Kids The World. Have a wonderful time!

Kelli

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Hey Alison, welcome back! I have also been away for some time. Our dd#1 has

Mitochondrial Encephalomyopathy and our dd#2 has Aicardi syndrome. We also

have a 3rd dd who is healthy. We have been to Disney World 8 times this

year. Our favorite family vacation spot. Wonderful for the girls. If you

have any questions or if I can help in any way with 's wish trip

please let me know. DD#1 had her wish trip in 2000 to Disney World and we

stayed at Give Kids The World. Have a wonderful time!

Kelli

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Guest guest

Guest guest

Posted
Posted

Hey Alison, welcome back! I have also been away for some time. Our dd#1 has

Mitochondrial Encephalomyopathy and our dd#2 has Aicardi syndrome. We also

have a 3rd dd who is healthy. We have been to Disney World 8 times this

year. Our favorite family vacation spot. Wonderful for the girls. If you

have any questions or if I can help in any way with 's wish trip

please let me know. DD#1 had her wish trip in 2000 to Disney World and we

stayed at Give Kids The World. Have a wonderful time!

Kelli

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