Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 In a message dated 99-04-14 03:00:16 EDT, you write: << My name is Aileen Flynn I have a 24yr old daughter diagnosed three years ago with MELAS Syndrome. I have read that there are certain antiepileptic medications which are not good to use on mito patients. Does anyone know which medications these are? Thanks, Aileen >> Dear Aileen: My name is Lynnie . I have a 22 year old daughter with " suspected " mitochondrial encephalomyopathy. It is our experence that Amy does not do well on Depakote. It: # 1. Exasperated her dementia, TERRABLY! and # 2. Is known to cause aplastic anemia. Amy is doing well on: # 1. Felbatol (only used for people with seizure disorders that do not respond to anything else) and # 2. Lamictal, which is working very well. Welcome to the MitoList. I hope you find comfort and information here. Lynnie Wife, Mother, Advocate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 In a message dated 99-04-14 18:03:44 EDT, you write: << Thanks for letting me know about Depakote. Does that have another name ? Aileen >> Valproate Acid = Depakote Lynnie Wife, Mother, Advocate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 In a message dated 99-04-15 15:04:13 EDT, you write: << Hi Lynnie, I am not familiar with Valproate Acid but I am familiar with Valproic Acid . Do you think it is the same thing? . >> Dear : Thanks for the info. Yes, I think they are the same. I have dyslexia, am slightly hearing impaired and have problems with spelling. I am sure you are right! Thank you for the illumination Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 In a message dated 4/15/99 3:04 Eastern Daylight Time, vmcgarry@... writes: > I am not familiar with Valproate Acid but I am familiar with Valproic Acid . > Do you think it is the same thing? Hi , Valproic Acid is also another name for depakote as is Valproate. My daughter Alison has mitochondrial disease. She was put on Depakote and 3 months later she was in liver failure. She had to have a liver transplant. Be very careful about Depakote. Not a good drug for mito patients or those with other metabolic disorders to be on (in my humble opinion and horrendous experience) Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Hi Lynnie, I am not familiar with Valproate Acid but I am familiar with Valproic Acid . Do you think it is the same thing? . Re: new member >From: GOLYNIE@... > >In a message dated 99-04-14 18:03:44 EDT, you write: > ><< Thanks for letting me know about Depakote. Does that have another name ? > Aileen > >> > >Valproate Acid = Depakote > >Lynnie >Wife, Mother, Advocate > >------------------------------------------------------------------------ >Did you know that knowledge is power? >http://www.ONElist.com >Join a new ONElist e-mail community and strengthen your mind! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Just thought I'd let you know that I am another list member who has had a bad experience with valproate (valproic acid, depakote, epilim). In 1993 my three year old daughter suffered massive liver failure and died after nine weeks on this drug. It should really be an anti-convulsant of last choice for mito patients. Lynne (Mummy of Angus, 6, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity) Re: new member >From: GOLYNIE@... > >In a message dated 99-04-14 03:00:16 EDT, you write: > ><< My name is Aileen Flynn I have a 24yr old daughter diagnosed three years >ago with MELAS Syndrome. I have read that there are certain antiepileptic >medications which are not good to use on mito patients. Does anyone know >which medications these are? Thanks, Aileen >> > >Dear Aileen: > >My name is Lynnie . I have a 22 year old daughter with " suspected " >mitochondrial encephalomyopathy. It is our experence that Amy does not do >well on Depakote. It: > ># 1. Exasperated her dementia, TERRABLY! and > ># 2. Is known to cause aplastic anemia. > >Amy is doing well on: > ># 1. Felbatol (only used for people with seizure disorders that do not >respond to anything else) and > ># 2. Lamictal, which is working very well. > >Welcome to the MitoList. I hope you find comfort and information here. > >Lynnie >Wife, Mother, Advocate > > > >------------------------------------------------------------------------ >Looking for the perfect gift for a friend? >http://www.ONElist.com >Tell them about ONElist's 115,000 free e-mail communities! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Just thought I'd let you know that I am another list member who has had a bad experience with valproate (valproic acid, depakote, epilim). In 1993 my three year old daughter suffered massive liver failure and died after nine weeks on this drug. It should really be an anti-convulsant of last choice for mito patients. Lynne (Mummy of Angus, 6, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity) Re: new member >From: GOLYNIE@... > >In a message dated 99-04-14 03:00:16 EDT, you write: > ><< My name is Aileen Flynn I have a 24yr old daughter diagnosed three years >ago with MELAS Syndrome. I have read that there are certain antiepileptic >medications which are not good to use on mito patients. Does anyone know >which medications these are? Thanks, Aileen >> > >Dear Aileen: > >My name is Lynnie . I have a 22 year old daughter with " suspected " >mitochondrial encephalomyopathy. It is our experence that Amy does not do >well on Depakote. It: > ># 1. Exasperated her dementia, TERRABLY! and > ># 2. Is known to cause aplastic anemia. > >Amy is doing well on: > ># 1. Felbatol (only used for people with seizure disorders that do not >respond to anything else) and > ># 2. Lamictal, which is working very well. > >Welcome to the MitoList. I hope you find comfort and information here. > >Lynnie >Wife, Mother, Advocate > > > >------------------------------------------------------------------------ >Looking for the perfect gift for a friend? >http://www.ONElist.com >Tell them about ONElist's 115,000 free e-mail communities! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Just thought I'd let you know that I am another list member who has had a bad experience with valproate (valproic acid, depakote, epilim). In 1993 my three year old daughter suffered massive liver failure and died after nine weeks on this drug. It should really be an anti-convulsant of last choice for mito patients. Lynne (Mummy of Angus, 6, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity) Re: new member >From: GOLYNIE@... > >In a message dated 99-04-14 03:00:16 EDT, you write: > ><< My name is Aileen Flynn I have a 24yr old daughter diagnosed three years >ago with MELAS Syndrome. I have read that there are certain antiepileptic >medications which are not good to use on mito patients. Does anyone know >which medications these are? Thanks, Aileen >> > >Dear Aileen: > >My name is Lynnie . I have a 22 year old daughter with " suspected " >mitochondrial encephalomyopathy. It is our experence that Amy does not do >well on Depakote. It: > ># 1. Exasperated her dementia, TERRABLY! and > ># 2. Is known to cause aplastic anemia. > >Amy is doing well on: > ># 1. Felbatol (only used for people with seizure disorders that do not >respond to anything else) and > ># 2. Lamictal, which is working very well. > >Welcome to the MitoList. I hope you find comfort and information here. > >Lynnie >Wife, Mother, Advocate > > > >------------------------------------------------------------------------ >Looking for the perfect gift for a friend? >http://www.ONElist.com >Tell them about ONElist's 115,000 free e-mail communities! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 99-08-16 23:06:47 EDT, you write: << " Some people only dream of angels; we held one in our arms! " I hope you don't mind if I use that in my daughter's eulogy. I don't know what else to say, >> I don't mind; I got it from the MISS website (Mothers in Sympathy and Support). I remember when Orion was in the ICU at St Chris' Hospital... every song I heard on the radio, I wondered if I should play it at his funeral. Then I would feel terrible for thinking like that... Mommy to Orion Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 99-08-16 23:06:47 EDT, you write: << " Some people only dream of angels; we held one in our arms! " I hope you don't mind if I use that in my daughter's eulogy. I don't know what else to say, >> I don't mind; I got it from the MISS website (Mothers in Sympathy and Support). I remember when Orion was in the ICU at St Chris' Hospital... every song I heard on the radio, I wondered if I should play it at his funeral. Then I would feel terrible for thinking like that... Mommy to Orion Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 , Thank you for sharing Orion with us. Your story is beautiful and I will carry it with me for a long time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Dear : Welcome to this list and thank you so very much for sharing your story about your beautiful little baby Orion. It was a very touching story and was said from your heart. I hope that we in this list can be some comfort to you and hope that we can also help you.....as I know you have already helped us. We will always be here for you! Thank you again. Regards, Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 : Thanks for sharing Orion's story with us. Your story was beautifully written and brought tears to my eyes. I noticed in your post that it appears that you are from the Philadelphia area. I live in Cherry Hill, NJ. What hospital did you take Orion to and which doctors. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 , Thank you for sharing Orion with us. And for sharing your pain at losing him. We are all crying with you. I'm glad you're on this list. Please write more about Orion when you can. Barbara mom to Alison/22/melas liver transplant due to depakote toxicity > Hello, my name is . My son, Orion, passed away on February 3, 1999, > from a neurodegenerative disorder, caused by a mitochondrial cytopathy. He > was 4 1/2 months old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 In a message dated 99-08-17 21:17:27 EDT, you write: << I noticed in your post that it appears that you are from the Philadelphia area. I live in Cherry Hill, NJ. What hospital did you take Orion to and which doctors. Love, Sharon >> Sharon; Yes, we are from Philadelphia... Orion was treated at St. 's Hospital for Children. They have the Barnett Center there... All of the doctors that treated him there were excellent, especially Dr. Consolini-- she is a very patient and caring person, as well as a wonderful doctor. Even now, 6 1/2 months after Orion's death, she still returns my calls promptly and tells me to have her paged if I have any urgent questions. His optholmologist was Dr. Diamond, who is supposed to be one of the best in the area. He is the one who diagnosed Orion's optic disc hypoplasia. Dr. Grover also was on Orion's medical team, although he is semi-retired. He is an expert on mitochondrial diseases. I don't have the name of Orion's neurologist with me at the moment; I will have to look it up for you. Are you looking for a place to go? If so, I would definitely recommend St. Chris', especially since the Barnett Ctr is right in the hospital. If there is anything else I can help you with, I'd be glad to... Orion's Mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 , Hi and welcome to the list. I was so touched by your story and know that Orion is an angel now. I love your pennies from heaven campaign and am amazed at your strength thru all this. We are also from the Phila. area and use St. s. We have had such a great experience with them and have had 5 hospitalizations since February, each one being positive. In fact Dr. Grover is our Neuro and we just saw Dr. Diamond. It is such a small place that I think people don't even know about the Barnett Center and the resources that are there. Thank you for sharing you story with us. God Bless Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 : Most of our doctors are at St. s. His mito doctor is actually in Baltimore - Dr. RIchard Kelley. His neuro is Dr. Kaye - used to be the Chief of Neuro at St. but is now at CHOP. Our GI is Dr. at St. s and his surgeon (who did the g-tube and fundo) is Dr. Vinocur at St. CHris. Funny we are actually trying to get an appointment with Dr. DIamond at CHOP for CLayton ASAP. I am glad that you liked him FUnny, We went to St, BUT the initially thought that Clayton was " too healthy: to have a mito disorder, even though his lactic levels were high and his amino acids out of wack - we went to the Barnett center. I love Dr. RIchard Kelley at KKI in Baltimore so we will stay with him. Where do you live. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 Dr. Diamond is at CHOP is that correct " Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 Dr. Diamond is at CHOP is that correct " Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 This list is getting huge!!!! Welcome everyone!!! Jo new member Hi everyone New member notice!This is an automated email message to let you know thatTLSelke@... joined your OSSG-NewEngland group.lyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2000 Report Share Posted April 30, 2000 Welcome aboard! Please tell us about yourself. Dawn Open RNY 8/9/99 Dr. Sheldon Randall/Lawrence Mem Hosp 137 lbs. gone! New Member Hello, This is an automated email message to let you know that Fischer123@... joined your OSSG-NewEngland group. ------------------------------------------------------------------------ Accurate impartial advice on everything from laptops to table saws. http://click./1/3020/7/_/675032/_/957132143/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 welcome, this is a great group you will love it and find lot's of information. Ruthann Pre-op DR. Aslam, Augusta, Maine surgery for weight loss. Beyond myself somewhere I wait for my arrival New Member > >Hello, > >This is an automated email message to let you know that >Fischer123@... joined your OSSG-NewEngland >group. > > >------------------------------------------------------------------------ >Accurate impartial advice on everything from laptops to table saws. >http://click./1/3020/7/_/675032/_/957132143/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 Hello, This is an automated email message to let you know that Aun@... joined your OSSG-NewEngland group. Hi please take a moment to introduce yourself to the group. Welcome! Lyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 welcome, this is a great group you will love it. Ruthann Pre-op DR. Aslam, Augusta, Maine surgery for weight loss. Beyond myself somewhere I wait for my arrival new Member > >Hello, > >This is an automated email message to let you know that >dynamann@... joined your OSSG-NewEngland >group. > > >Welcome to the list- please take a moment to introduce yourself. >Lyssa > > >------------------------------------------------------------------------ >Now the best and coolest websites come right to you based on your >unique interests. eTour.com is surfing without searching. >And, it's FREE! >http://click./1/3013/7/_/675032/_/957268306/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 HELLO DYNAMANN AND WELCOME. MAURA --- LyssaF wrote: > > Hello, > > This is an automated email message to let you know > that > dynamann@... joined your OSSG-NewEngland > group. > > > Welcome to the list- please take a moment to > introduce yourself. > Lyssa > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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