Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi everyone My son who is 15 months is highly suspected of a leighs syndrome, a recent MRI shows more damage in the brian stem he is also hypotonic now with some dystonia and in pain a lot of the day. [currently in hospital] Did any of you have symtoms like this with your children? I know it sounds strange but i would like to know roughly how long we might or might not have with him. Father to Lucas the Lion VisibleWorship@... wrote: they are the same thing...Mito is covered by the Muscular dystrophy Association... it is not a true form of MD>..but the MDA now covers about 35 neuromuscular diseases that aren't MDs... is that what you mean? or did they diagnose a specific form of MD that is not Mito? deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.comPlease contact mito-owner with any problems or questions. Send instant messages to your online friends http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Dear , I'm sorry I have no experience to help you with, but you are in my prayers. Donna From: martin f To: Mito Sent: Tuesday, March 01, 2005 4:21 PM Subject: MRI lesions basal ganglia Hi everyone My son who is 15 months is highly suspected of a leighs syndrome, a recent MRI shows more damage in the brian stem he is also hypotonic now with some dystonia and in pain a lot of the day. [currently in hospital] Did any of you have symtoms like this with your children? I know it sounds strange but i would like to know roughly how long we might or might not have with him. Father to Lucas the Lion VisibleWorship@... wrote: they are the same thing...Mito is covered by the Muscular dystrophy Association... it is not a true form of MD>..but the MDA now covers about 35 neuromuscular diseases that aren't MDs... is that what you mean? or did they diagnose a specific form of MD that is not Mito? deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.comPlease contact mito-owner with any problems or questions. Send instant messages to your online friends http://uk.messenger.yahoo.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 hi martin. i have a 5 year old daughter who was dx with leighs at age 2. she is nonverbal and nonambulatory. however, she is very aware of everything and communicates with a few signs and through facial expressions. she is very happy. i worry about what might happen and her prognosis, but she is " maintaining " at age 5! and is very happy! bethany mom to brennan 8, palmer & anna grace (leighs) 5 > they are the same thing...Mito is covered by the Muscular dystrophy Association... > > it is not a true form of MD>..but the MDA now covers about 35 neuromuscular diseases that aren't MDs... > > is that what you mean? or did they diagnose a specific form of MD that is not Mito? > > deb...mom to four great kids and wife to one amazing guy! > www.LifeofLoveProject.org > www.debwells.com > > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi F Welcome to the group. Sorry to hear of your son's diagnosis. My nephew, Aristotle, has been diagnosed with Leigh's. He has lesions on his brain stem also. He is almost 2 (April 22) and is on a vent. Right now, he is at home, but he frequently makes trips back to the hospital for treatment of infections, etc. We don't know how long we will have him, but we've read that many kids with Leighs don't make it past age two. There are many others who've made it much longer. We try to eke out as much joy as possible during the time we have, but it's difficult when you worry about the pain they may be experiencing. Sorry I don't have any good answers for you. They seem to be in short supply with this disease. Best wishes to you and your family, CyndyK, aunt to Aristotle Messer, 18 months, Leigh's martin f wrote: Hi everyone My son who is 15 months is highly suspected of a leighs syndrome, a recent MRI shows more damage in the brian stem he is also hypotonic now with some dystonia and in pain a lot of the day. [currently in hospital] Did any of you have symtoms like this with your children? I know it sounds strange but i would like to know roughly how long we might or might not have with him. Father to Lucas the Lion VisibleWorship@... wrote: they are the same thing...Mito is covered by the Muscular dystrophy Association... it is not a true form of MD>..but the MDA now covers about 35 neuromuscular diseases that aren't MDs... is that what you mean? or did they diagnose a specific form of MD that is not Mito? deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.comPlease contact mito-owner with any problems or questions. Send instant messages to your online friends http://uk.messenger.yahoo.com Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 F, My daughter, Ellie, who is 3 1/2 on April 5th, has also been diagnosed with Leigh's, Complex IV. She is also hypotonic, has several brain lesions, has ataxia and very short stature. She is 24 pounds soaking wet and is about 32 inches on a good day. But, congnitively she is wonderful. She has been doing some independent walking and is a joy to be around. We see both Dr. Cohen and Dr. Shoffner. Shoffner told us in December that she will most likely die between the ages of 5 and 8. However, I am inspired by many people on this board who have children with Leigh's and/or complex IV who are much older. Each child is different. This disease comes with varying degrees of symptoms, pain levels, ages and reactions to meds/cocktails. It is impossible to compare cases as each is different. However, this is the right place to be for support and advice. My only advice is to just love Lucas the Lion each and every day. Each day is a gift. Make each day important to you and him - play, love, laugh, fight the system to get the best care, and most importantly, hold each other tight. Please keep us posted on how Lucas is doing. KK Mommy to Ellie, 3 years old....Leigh's, Complex IV and my angel Re: MRI lesions basal ganglia Hi F Welcome to the group. Sorry to hear of your son's diagnosis. My nephew, Aristotle, has been diagnosed with Leigh's. He has lesions on his brain stem also. He is almost 2 (April 22) and is on a vent. Right now, he is at home, but he frequently makes trips back to the hospital for treatment of infections, etc. We don't know how long we will have him, but we've read that many kids with Leighs don't make it past age two. There are many others who've made it much longer. We try to eke out as much joy as possible during the time we have, but it's difficult when you worry about the pain they may be experiencing. Sorry I don't have any good answers for you. They seem to be in short supply with this disease. Best wishes to you and your family, CyndyK, aunt to Aristotle Messer, 18 months, Leigh's martin f wrote: Hi everyone My son who is 15 months is highly suspected of a leighs syndrome, a recent MRI shows more damage in the brian stem he is also hypotonic now with some dystonia and in pain a lot of the day. [currently in hospital] Did any of you have symtoms like this with your children? I know it sounds strange but i would like to know roughly how long we might or might not have with him. Father to Lucas the Lion VisibleWorship@... wrote: they are the same thing...Mito is covered by the Muscular dystrophy Association... it is not a true form of MD>..but the MDA now covers about 35 neuromuscular diseases that aren't MDs... is that what you mean? or did they diagnose a specific form of MD that is not Mito? deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.comPlease contact mito-owner with any problems or questions. Send instant messages to your online friends http://uk.messenger.yahoo.com Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 I really wish I had more time to chat. I am on my way to bed and this was my last stop! Please E-mail me at anytime or visit Eli's Website. I will answer what ever I can. Whatever will help you. Ann at: akurtz1974@... Or Eli's Site at: http://www.caringbridge.org/co/elijahkurtz My little Elijah was diagnosed with Leigh's at 5 1/2 months old. He had " insult " to his Basal ganglia, and his Thalamus was hypotonic and signs of dystonia among many other problems. Doctors avoided giving us a timeline. It was the most frustrating question that always went unanswered. Nobody would give us any life expectancy. That forced us to read and read and read. All that we could find is information on children that had already passed. Story after story of children with the same story. Many were infants such as Eli. We were looking for HOPE to cling to. Stats said 6 months to 2 years after diagnosis. The only answer the Doctors would give us is that Eli was extremly affected and his time would be short. Take him home and LOVE him as much as you can for as long as you can. Now after a year and a half we totally understand why they never gave us numbers. They just don't know. Each child is differant, is what they kept telling us and now we know. According to all that we read and all that everyone had told us Eli only has a few months left from now. So far he hasn't fully defied the odds but he is working on it. By the way your question is not strange. It is one that we want an answer for. There isn't one. I think it is mainly to find some shred of hope in a dianosis that takes hope and dreams away. I wanted them to tell me that my son wasn't as bad as the cases they had seen and he would live longer. They didn't! Eli's Leigh's is progressing. On 2/15/05 he turned 2! I really don't think he will make his 3rd and I am very thankful he is here right now to love and snuggle as much as I can. I wish there was some way to take the pain away. Eli's Angels is a non-profit for children affected with Mitochondrial or metabolic illnesses please stop by the site. http://home.comcast.net/~elis_angels/ Ann( Mommy to Elijah the sweetest boy in the world) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi , At 6 months my daughter was tentatively diagnosed with Leigh's, due to lesions on the brain stem. She was having very severe symptoms, (low heart rate, low O2 sats, etc) and their best guess was that she had weeks to live. We took her home and cared for her (with the help of many others), and she surpassed everyone's predictions and fought for another 13 months. I would be happy to answer any other questions in this forum or privately: Jenbekker@... Best wishes to you and your family Jen Mom to Lucas 3.5 yrs, and Angel Kira MRI lesions basal ganglia > Hi everyone > > My son who is 15 months is highly suspected of a leighs syndrome, > a recent MRI shows more damage in the brian stem he is also > hypotonic now with some dystonia and in pain a lot of the day. > [currently in hospital] > > Did any of you have symtoms like this with your children? I know > it sounds strange but i would like to know roughly how long we > might or might not have with him. > > > > Father to Lucas the Lion > > > VisibleWorship@... wrote: > they are the same thing...Mito is covered by the Muscular > dystrophy Association... > > it is not a true form of MD>..but the MDA now covers about 35 > neuromuscular diseases that aren't MDs... > > is that what you mean? or did they diagnose a specific form of MD > that is not Mito? > > deb...mom to four great kids and wife to one amazing guy! > www.LifeofLoveProject.org > www.debwells.com > > > > Please contact mito-owner with any problems or > questions. > > > Quote Link to comment Share on other sites More sharing options...
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