Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 i know it has been a long time since i have posted abigail had another crisis that not only sent us to the hospital, but found us being moved from ShadyGrove in Rockville, MD to JHH in Baltimore, MD after a week we are home from the hospital...abigail is still regaining her strength she can not hold up her head, or sit unassisted though she can walk if we stand her up on her feet we are back with dr crawford again and he is wanting to schedule the muscle biopsy when she has recovered to her full potential oddly...we were with him a year ago and he said it wasn't worth agressivly going after...that is when we went to childrens after months of testing there they said...call us back in 6 months or if she goes into crisis...one week later abigail was in the hospital...within a few days the local hospital became to uneasy about keeping her as her ck, liver and other levels kept rising that we were moved to JHH in Baltimore currently she is being followed by JH once again, and children's has been cut from the loop dr kelly has gotten involved and she is on the kelly cocktail which was made for us by a pharmacy in Bethesda...though costly it is easy to administer are there other children like abby who are doing pretty well, seem almost normal and then suddenly lose everything? how do you survive do your children regain what they have lost, or do they come back less and less each time so many questions, so much frustration, and so very tired from it all myst Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Myst, I am sorry that you guys have been through so much. It sound crazy. I am very glad that you got with Dr. Kelley! He is a great guy. I have only dealt with him through email, but he reviewed all of morgan's history and gave me his opinion for free without even meeting with us. What is in the kelley cocktail? Would love to know. Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Dawn, Vitamin Mixture in ora plus or equivalent disp: 300ml sig: 2.5 ml TID Coenzyme Q10 Vitamin E Vitamin C Riboflavin Lipoic Acid Pantothenate I believe this is only one of two that Dr uses. Myst > Myst, > > I am sorry that you guys have been through so much. It sound crazy. > I am very glad that you got with Dr. Kelley! He is a great guy. I > have only dealt with him through email, but he reviewed all of > morgan's history and gave me his opinion for free without even > meeting with us. What is in the kelley cocktail? Would love to know. > > Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 I left out the carnitine...sorry > > Myst, > > > > I am sorry that you guys have been through so much. It sound > crazy. > > I am very glad that you got with Dr. Kelley! He is a great guy. I > > have only dealt with him through email, but he reviewed all of > > morgan's history and gave me his opinion for free without even > > meeting with us. What is in the kelley cocktail? Would love to > know. > > > > Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 I am so sorry to hear how much your daughter is going through. Have the doctors suggested that she had a stroke episode or do they feel it was just a Mitochondrial crisis causing regression of her symptoms? Our Mito affected kids have tons of regressing stroke episodes and it can definitely be frustrating seeing them do well and then suddenly become very affected. In our case we have been through the ups and downs now for several years and it hurts every time to see them struggle to try to regain things. Some things come back and some things don't. How long (days, weeks, etc.)has it been since she was unable to sit up by herself? It sounds like her trunk muscles were affected. Asenath, my four year old, has had this happen to her twice and each time I worried she wouldn't get it back. Trunk muscle weakness and tummy muscle weakness would explain why she can walk once upright, but not be able to pull herself up or even hold her head up by herself. To answer the question of does it come back or get it back but lose some each time, I think it really depends on the child and what is causing the issue to begin with. With Asenath, she is slowly losing some capabilities but at the same time learning new things and regaining other lost issues. How do we survive? More than anything my faith keeps me going but beyond that, trying to live just today rather than constantly focusing on tomorrow and the what if's that may lie ahead. We have three kids who show strokes and Asenath in particular has CNS brain Vasculitis which is extremely deadly, so we could be overwhelmed by the situation, but we instead try to focus on the positives. We focus on the fact that they are still here with us, we focus on regained skills, the fact they they could have lost much more abilities than they have, and focus on every minute we have to play, cuddle, and spend time with them. There are definitely bad days and scary times, but thankfully there are also the good days. I will be praying you have some good days ahead too. Welcome back to the list and I hope you feel comfortable asking any further questions from me or the others on the list. Darla: mommy to Asenath (4), Zipporrah (8 months), Luke (16) and the other 6 kiddos > i know it has been a long time since i have posted > > abigail had another crisis that not only sent us to the hospital, > but found us being moved from ShadyGrove in Rockville, MD to JHH in > Baltimore, MD > > after a week we are home from the hospital...abigail is still > regaining her strength > > she can not hold up her head, or sit unassisted though she can walk > if we stand her up on her feet > > we are back with dr crawford again and he is wanting to schedule the > muscle biopsy when she has recovered to her full potential > > oddly...we were with him a year ago and he said it wasn't worth > agressivly going after...that is when we went to childrens > > after months of testing there they said...call us back in 6 months > or if she goes into crisis...one week later abigail was in the > hospital...within a few days the local hospital became to uneasy > about keeping her as her ck, liver and other levels kept rising that > we were moved to JHH in Baltimore > > currently she is being followed by JH once again, and children's has > been cut from the loop > > dr kelly has gotten involved and she is on the kelly cocktail which > was made for us by a pharmacy in Bethesda...though costly it is easy > to administer > > are there other children like abby who are doing pretty well, seem > almost normal and then suddenly lose everything? > > how do you survive > > do your children regain what they have lost, or do they come back > less and less each time > > so many questions, so much frustration, and so very tired from it all > > myst Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Gracie had never had a crisis up until about 6 months ago, now they seem to be happening pretty often. Although she has never regressed to the point your daughter has, she has lost many skills at once. Her longest regression lasted over two months and she lost alot of coordination, speech, and had feeding/digestion troubles during the time. Thankfully she regained to normal again, except her digestion problems. She has had a couple days where she could hardly walk, but they lasted only a few days then she regained quickly. Dr. Cohen reccomended a MRI after the two month regression to see if there was any permanant damage. Thankfully she was fine. Now I worry everytime she starts to sleep more than often, but hopefully my anxiety will pass as I get "used" to this happening. Best wishes for you and your daughter, hopefully she will regain everything very soon. ,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Sorry you have been through so much I pray for a fast recovery for her and that you find answers. mom to zach now 4 (birthday last monday ) alexis 5 -- In Mito , " mr_lucy " wrote: > i know it has been a long time since i have posted > > abigail had another crisis that not only sent us to the hospital, > but found us being moved from ShadyGrove in Rockville, MD to JHH in > Baltimore, MD > > after a week we are home from the hospital...abigail is still > regaining her strength > > she can not hold up her head, or sit unassisted though she can walk > if we stand her up on her feet > > we are back with dr crawford again and he is wanting to schedule the > muscle biopsy when she has recovered to her full potential > > oddly...we were with him a year ago and he said it wasn't worth > agressivly going after...that is when we went to childrens > > after months of testing there they said...call us back in 6 months > or if she goes into crisis...one week later abigail was in the > hospital...within a few days the local hospital became to uneasy > about keeping her as her ck, liver and other levels kept rising that > we were moved to JHH in Baltimore > > currently she is being followed by JH once again, and children's has > been cut from the loop > > dr kelly has gotten involved and she is on the kelly cocktail which > was made for us by a pharmacy in Bethesda...though costly it is easy > to administer > > are there other children like abby who are doing pretty well, seem > almost normal and then suddenly lose everything? > > how do you survive > > do your children regain what they have lost, or do they come back > less and less each time > > so many questions, so much frustration, and so very tired from it all > > myst Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Hi, Myst - We will pray for you and Abigail - that her problems get figured out quickly, and that the mito cocktail works well for her, and that she stays healthy at home! Kathy they call it crisis i know it has been a long time since i have postedabigail had another crisis that not only sent us to the hospital, but found us being moved from ShadyGrove in Rockville, MD to JHH in Baltimore, MDafter a week we are home from the hospital...abigail is still regaining her strengthshe can not hold up her head, or sit unassisted though she can walk if we stand her up on her feetwe are back with dr crawford again and he is wanting to schedule the muscle biopsy when she has recovered to her full potentialoddly...we were with him a year ago and he said it wasn't worth agressivly going after...that is when we went to childrensafter months of testing there they said...call us back in 6 months or if she goes into crisis...one week later abigail was in the hospital...within a few days the local hospital became to uneasy about keeping her as her ck, liver and other levels kept rising that we were moved to JHH in Baltimorecurrently she is being followed by JH once again, and children's has been cut from the loopdr kelly has gotten involved and she is on the kelly cocktail which was made for us by a pharmacy in Bethesda...though costly it is easy to administerare there other children like abby who are doing pretty well, seem almost normal and then suddenly lose everything?how do you survivedo your children regain what they have lost, or do they come back less and less each timeso many questions, so much frustration, and so very tired from it allmystPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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