Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dear , I was glad to see that I wasen't the only parent out there in the dark! Reese is currently receiving physical therapy twice a week and occupational therapy twice a week. He also is receiving speech therapy once a week since he is almost a 1 1/2 old and still only says Da-Da! Is recieving any therapy yet? Reese has come a long way since his diagnosis last year. He is standing well in his prone stander and is getting ready to start walking in a gait trainer in a few months. I strongly doubt that he will ever walk without some assistance but one can never tell at this stage. He biggest trouble is learning to use his left hand. He keeps it in a fist most of the time but that too is improving. I didn't think that he could ever do any two handed signs but much to my surprise he has done it, it doesn't look perfect but it is good enough for us to understand him and that is all that matters. Has had any seisures yet? Reese hasen't had any but from what I understand the risk never goes away. My greatest fear is that he will have a seisure while he is receiving open heart surgery! Which, by the way, he will be having in the next few weeks. I pray that some answers for the both of us comes soon. I'll continue to share what we have experienced as long as you want me to. This is by far the most frustrating part of my son's various medical conditions. To receive a diagnosis of PMG is bad but not truly understanding what that means is even worst!!!! Just know that you are not alone in your frustration and fear, after all I am here in the same boat. Sincerely, Meredith > Dear Meredith > > Our son is only unilateral (on the left side) but as he is only 6 > months old and was only diagnosed 3 months ago we are in the dark as much as > you are! In fact really, this is just a message of support and to say that > we too would be interested in hearing any other unilateral experiences. > > Take care > > Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dear , I was glad to see that I wasen't the only parent out there in the dark! Reese is currently receiving physical therapy twice a week and occupational therapy twice a week. He also is receiving speech therapy once a week since he is almost a 1 1/2 old and still only says Da-Da! Is recieving any therapy yet? Reese has come a long way since his diagnosis last year. He is standing well in his prone stander and is getting ready to start walking in a gait trainer in a few months. I strongly doubt that he will ever walk without some assistance but one can never tell at this stage. He biggest trouble is learning to use his left hand. He keeps it in a fist most of the time but that too is improving. I didn't think that he could ever do any two handed signs but much to my surprise he has done it, it doesn't look perfect but it is good enough for us to understand him and that is all that matters. Has had any seisures yet? Reese hasen't had any but from what I understand the risk never goes away. My greatest fear is that he will have a seisure while he is receiving open heart surgery! Which, by the way, he will be having in the next few weeks. I pray that some answers for the both of us comes soon. I'll continue to share what we have experienced as long as you want me to. This is by far the most frustrating part of my son's various medical conditions. To receive a diagnosis of PMG is bad but not truly understanding what that means is even worst!!!! Just know that you are not alone in your frustration and fear, after all I am here in the same boat. Sincerely, Meredith > Dear Meredith > > Our son is only unilateral (on the left side) but as he is only 6 > months old and was only diagnosed 3 months ago we are in the dark as much as > you are! In fact really, this is just a message of support and to say that > we too would be interested in hearing any other unilateral experiences. > > Take care > > Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dear , I was glad to see that I wasen't the only parent out there in the dark! Reese is currently receiving physical therapy twice a week and occupational therapy twice a week. He also is receiving speech therapy once a week since he is almost a 1 1/2 old and still only says Da-Da! Is recieving any therapy yet? Reese has come a long way since his diagnosis last year. He is standing well in his prone stander and is getting ready to start walking in a gait trainer in a few months. I strongly doubt that he will ever walk without some assistance but one can never tell at this stage. He biggest trouble is learning to use his left hand. He keeps it in a fist most of the time but that too is improving. I didn't think that he could ever do any two handed signs but much to my surprise he has done it, it doesn't look perfect but it is good enough for us to understand him and that is all that matters. Has had any seisures yet? Reese hasen't had any but from what I understand the risk never goes away. My greatest fear is that he will have a seisure while he is receiving open heart surgery! Which, by the way, he will be having in the next few weeks. I pray that some answers for the both of us comes soon. I'll continue to share what we have experienced as long as you want me to. This is by far the most frustrating part of my son's various medical conditions. To receive a diagnosis of PMG is bad but not truly understanding what that means is even worst!!!! Just know that you are not alone in your frustration and fear, after all I am here in the same boat. Sincerely, Meredith > Dear Meredith > > Our son is only unilateral (on the left side) but as he is only 6 > months old and was only diagnosed 3 months ago we are in the dark as much as > you are! In fact really, this is just a message of support and to say that > we too would be interested in hearing any other unilateral experiences. > > Take care > > Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dear Meredith Many thanks for you message. At the moment is just receiving physio once a week and is on the waiting list for occupational therapy. We have had some problems getting the various doctors, agencies etc to pull together with us on this one, but things look as if they may finally be moving forward. While your Reece has problems with his left side is quite slow on his right! Unfortunately he started seizing when he was just 14 weeks old (that was how we ended up in hospital for a month and how he become diagnosed with PMG) - the seizures are not yet under control totally, but are down to about one in every 36 hours. He is on four drugs: sodium valporate, prednisolone, topiramate and clonazepan - in the past he has also been on phenitoin, carmabazamine and vigabatrin!!!!!!!!!! Nothing really seems to be stopping them and our neurologist believes that it is the constant seizure activity rather than his PMG that is holding him back. We are in the UK, but have a friend in LA whose baby, even younger than , is also about to have open heart surgery so I really do feel for you and totally empathise with your frustration at not knowing where our children's conditions will go - if I were you I'd just keep hoping the seizures stay away. Thinking of you, stay in touch Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dear Meredith Many thanks for you message. At the moment is just receiving physio once a week and is on the waiting list for occupational therapy. We have had some problems getting the various doctors, agencies etc to pull together with us on this one, but things look as if they may finally be moving forward. While your Reece has problems with his left side is quite slow on his right! Unfortunately he started seizing when he was just 14 weeks old (that was how we ended up in hospital for a month and how he become diagnosed with PMG) - the seizures are not yet under control totally, but are down to about one in every 36 hours. He is on four drugs: sodium valporate, prednisolone, topiramate and clonazepan - in the past he has also been on phenitoin, carmabazamine and vigabatrin!!!!!!!!!! Nothing really seems to be stopping them and our neurologist believes that it is the constant seizure activity rather than his PMG that is holding him back. We are in the UK, but have a friend in LA whose baby, even younger than , is also about to have open heart surgery so I really do feel for you and totally empathise with your frustration at not knowing where our children's conditions will go - if I were you I'd just keep hoping the seizures stay away. Thinking of you, stay in touch Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Dear Meredith Many thanks for you message. At the moment is just receiving physio once a week and is on the waiting list for occupational therapy. We have had some problems getting the various doctors, agencies etc to pull together with us on this one, but things look as if they may finally be moving forward. While your Reece has problems with his left side is quite slow on his right! Unfortunately he started seizing when he was just 14 weeks old (that was how we ended up in hospital for a month and how he become diagnosed with PMG) - the seizures are not yet under control totally, but are down to about one in every 36 hours. He is on four drugs: sodium valporate, prednisolone, topiramate and clonazepan - in the past he has also been on phenitoin, carmabazamine and vigabatrin!!!!!!!!!! Nothing really seems to be stopping them and our neurologist believes that it is the constant seizure activity rather than his PMG that is holding him back. We are in the UK, but have a friend in LA whose baby, even younger than , is also about to have open heart surgery so I really do feel for you and totally empathise with your frustration at not knowing where our children's conditions will go - if I were you I'd just keep hoping the seizures stay away. Thinking of you, stay in touch Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 , I am sorry to hear about 's seizures. I pray that the Doctor's will find a way to put an end to them soon. I can only imagine how terrifying they must be for you and him, although now I am sure that you are becoming a pro at handling them. It's funny how quickly you learn to deal with these situations isn't it. I have a cousin that has a daughter with Cerebral Palsy who is now 10 years old. She was born severely premature and is now confined to a motorized wheelchair. She is a wonderful child but I used to say often how I could never handle such a burden. God must have disagreed with me when he sent me Reese. I am glad that he proved me wrong! I ran across this story in this book I am reading called " Extraordinary Kids, nurturing and championing your child with special needs " , and I really wanted to share it with you. I know that this describes how I feel and I am sure that many of us can relate as well. Welcome to Holland! by Pearl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo . The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The flight attendant comes and says, " Welcome to Holland. " " Holland?! " you say. " What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. " But there's been a change in the flight plan. They've landed in Holland, and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you otherwise would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while, you catch your breath, look around, and begin to notice that Holland has windmills, tulips, and even Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned. " And the pain of that will never, ever go away, because the loss of that dream is a significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special and very lovely things about Holland. -Meredith Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 , I am sorry to hear about 's seizures. I pray that the Doctor's will find a way to put an end to them soon. I can only imagine how terrifying they must be for you and him, although now I am sure that you are becoming a pro at handling them. It's funny how quickly you learn to deal with these situations isn't it. I have a cousin that has a daughter with Cerebral Palsy who is now 10 years old. She was born severely premature and is now confined to a motorized wheelchair. She is a wonderful child but I used to say often how I could never handle such a burden. God must have disagreed with me when he sent me Reese. I am glad that he proved me wrong! I ran across this story in this book I am reading called " Extraordinary Kids, nurturing and championing your child with special needs " , and I really wanted to share it with you. I know that this describes how I feel and I am sure that many of us can relate as well. Welcome to Holland! by Pearl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo . The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The flight attendant comes and says, " Welcome to Holland. " " Holland?! " you say. " What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. " But there's been a change in the flight plan. They've landed in Holland, and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you otherwise would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while, you catch your breath, look around, and begin to notice that Holland has windmills, tulips, and even Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned. " And the pain of that will never, ever go away, because the loss of that dream is a significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special and very lovely things about Holland. -Meredith Question > > > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da- Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi Meredith, my name is . My son Jarret was dx with pachygyria when he was 20mths old. (he's 5 1/2 now) Dr. Doybns went over Jarret's MRI and told me that he has LISS 1 grade 4 most severe in the back, indication a small mutation of the 17th chromosome. To date, Jarret can walk well, with a slightly wide base and forward list. Does stairs-up and down-using handrails or holding your hands. Climbs on ANYTHING but usually gets stuck and starts holloring for mama. He uses a mixture of speech, sign and body language for communication. btw Jarret would only say dada for about 1 yr and no matter how much I would coach him, mama! He'd look at me and say dadda!! NOW, it's mamamamamamamamama for everything!! He is predominately a lefty, but is more accurate with his right probably b/c of his eyesight. Nice talking to you and I hope this helps. I remember all too well how I felt when Jarret was dx'd and looking for answers. The medical side was grim and clinical text book examples not " real " people discussing their kids. **************************************** > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da-Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Dear Meredith, as the neuro in the hospital here wrote that Timon has PMG but with a ? beside it and when I asked never really gave me any real answeres, I can not say what kind of PMG he has. To me it looked as if the whole brain was affected! Still, Timon is doing very well. He is now 5.8 years old and has an development of about an 3 year old. Speach is less, but we/he is working on it. Timon can walk, climb, has difficulties to keep his balance, motoric skills like holding a pen etc. are hardly there, he still has diapers. ( We have an appointment in March to check if it is the brain or some organic reason for it.) Timon started to say mama papa when he was about 2.5 years old. With speach therapy since he is 3 and ergotherapy and musical therapy it has started to get better. As I am dutch and my husband is german and we live in germany I speak dutch with Timon and his dad, brother and sister and the rest are speaking german with him. Timon does not seem to have any difficulties with it. Some words he knows in german others in dutch. The neuro here can not give me any prognosis on the metal abilities for the future, he keeps on making little steps and we will have to see how far he will get. Fortunatly Timon has no real seizures, they noticed activities on the EEG, but Timon does not seem to be affected during day to day life. Dear Meredith, I hope this information will help you a little bit further, still, only time can tell what to expect for Reese. Don´t give up and never ever let anybody tell you he can not do something because of his handicap. I have had to hear that so often that I still get angry and do not think it will ever stop. People keep telling me not to speak both languages with him, but he can understand both and learns them both! They told me not to put him in a normal kindergarden because he could not make it, but he is doing fine and is making good progress! You are the only one who knows what is best for your kid, you feel how he feels and should take advice, but do what you feel is best. Take care and a big hug for Reese, Bianca Meredith wrote: > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da-Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Dear Meredith, as the neuro in the hospital here wrote that Timon has PMG but with a ? beside it and when I asked never really gave me any real answeres, I can not say what kind of PMG he has. To me it looked as if the whole brain was affected! Still, Timon is doing very well. He is now 5.8 years old and has an development of about an 3 year old. Speach is less, but we/he is working on it. Timon can walk, climb, has difficulties to keep his balance, motoric skills like holding a pen etc. are hardly there, he still has diapers. ( We have an appointment in March to check if it is the brain or some organic reason for it.) Timon started to say mama papa when he was about 2.5 years old. With speach therapy since he is 3 and ergotherapy and musical therapy it has started to get better. As I am dutch and my husband is german and we live in germany I speak dutch with Timon and his dad, brother and sister and the rest are speaking german with him. Timon does not seem to have any difficulties with it. Some words he knows in german others in dutch. The neuro here can not give me any prognosis on the metal abilities for the future, he keeps on making little steps and we will have to see how far he will get. Fortunatly Timon has no real seizures, they noticed activities on the EEG, but Timon does not seem to be affected during day to day life. Dear Meredith, I hope this information will help you a little bit further, still, only time can tell what to expect for Reese. Don´t give up and never ever let anybody tell you he can not do something because of his handicap. I have had to hear that so often that I still get angry and do not think it will ever stop. People keep telling me not to speak both languages with him, but he can understand both and learns them both! They told me not to put him in a normal kindergarden because he could not make it, but he is doing fine and is making good progress! You are the only one who knows what is best for your kid, you feel how he feels and should take advice, but do what you feel is best. Take care and a big hug for Reese, Bianca Meredith wrote: > It's been a long while since I have read any of the messages much > less post any so bear with me but I have some questions I am hoping > that you all can help me with. > > My son Reese is just turning 18 months old. He was diagnosed with > unilateral Polymicrogyria and Pachygria. He also has Velo-Cardio- > Facial Syndrome and Tetrallogy of Fallot with Pulmanary Atresia. We > didn't receive his Polymicrogyria diagnosis until he was 7 months > old. It's been almost a year now and I still feel like I am in the > dark. I have email Dr. Dobbins and he agreed to review my son's MRI > films and medical records for his geneticist but I never heard > anything further from him. All I can tell you all is that my son's > right frontal and temporal lobes are affected which is causing him to > have difficulty using his left arm, hand and sometimes leg. He has > some balance issues and speech difficulties (still only says Da-Da, > figures huh?). He still isn't sitting up on his own (almost there > but not there yet) much less walking, standing and you can forget > crawling. No seisures yet and we have a some recent success with > sign language (just eat and more but we will gladly take it). > > Here is my biggest question, Is there anyone else in this group that > has a child with only one side and a couple of lobes effected? If > so, I am curious as to how this diagnosis is effecting your child? I > am primarily trying to gage my son's mental abilites so far and also > I am interested in preparing myself for what to expect. I realize > that there is no way to predict the outcome for my child but still as > you all must understand I am trying my best to brace myself for the > potential outcome. I hate that there is so little information > available on this topic. I pray that you all can shead some light on > the subject. > > Thanks in advance, > > Meredith Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 , Kennedy has a walker called a Pacer Gait Trainer, it's made by Rifton. It is really good for kids who can't totally support their own weight. If you put the name in your search engine you can see what they look like. and Kennedy(3 1/2yrs.,pmg) >From: MrsK143@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Question >Date: Sat, 22 Feb 2003 12:58:47 EST > >Good Morning everyone! I was browsing through some e-mail and saw a mom >mention a Hart walker and I am very curious to know about it. My son >Ethan is 2 1/2 and was diagnosed with PMG at 6 months old. He is not >walking >yet but I think alot has to do with his stroke he had back in July. (He has >a >little left sided weakness.) Now he was very close to walking right before >the stroke but now he hardly bears any weight at all. Any suggestions? Does >anyone think this walker would help? (What is it anyway?! Can Ethan's P.T >get >one!?) Thanks everyone! >Take Care >Hugs and Kisses > > > Kalakosky Ethan's >mommy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 , Kennedy has a walker called a Pacer Gait Trainer, it's made by Rifton. It is really good for kids who can't totally support their own weight. If you put the name in your search engine you can see what they look like. and Kennedy(3 1/2yrs.,pmg) >From: MrsK143@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Question >Date: Sat, 22 Feb 2003 12:58:47 EST > >Good Morning everyone! I was browsing through some e-mail and saw a mom >mention a Hart walker and I am very curious to know about it. My son >Ethan is 2 1/2 and was diagnosed with PMG at 6 months old. He is not >walking >yet but I think alot has to do with his stroke he had back in July. (He has >a >little left sided weakness.) Now he was very close to walking right before >the stroke but now he hardly bears any weight at all. Any suggestions? Does >anyone think this walker would help? (What is it anyway?! Can Ethan's P.T >get >one!?) Thanks everyone! >Take Care >Hugs and Kisses > > > Kalakosky Ethan's >mommy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 , My son Reese is getting a gait trainer called the Miniwalk. It is made by mulholland. You can look at it (click on the word Meywalk) and the other gait trainer they have called the walkabout. Here is their web-site: http://www.mulhollandinc.com/ Both gait trainers are wonderful products. I went to the medical supply convention with my son's physical therapist this past fall and we both thought their products were much more user friendly and they offered unique features like spring suspension and larger indoor/outdoor wheels. Ask your therapist about them to see if your son is candidate for one. My son also has a prone stander for weight bearing, which was our first step in the process. Reese has left sided weakness also primarily because his PMG is largely on the right side of his brain. I hope that this helps.... -Meredith (Mom to Reese 19 months, Deletion 22q syndrome, Tetrollogy of Fallot w/PA and PMG) Question >Date: Sat, 22 Feb 2003 12:58:47 EST > >Good Morning everyone! I was browsing through some e-mail and saw a mom >mention a Hart walker and I am very curious to know about it. My son >Ethan is 2 1/2 and was diagnosed with PMG at 6 months old. He is not >walking >yet but I think alot has to do with his stroke he had back in July. (He has >a >little left sided weakness.) Now he was very close to walking right before >the stroke but now he hardly bears any weight at all. Any suggestions? Does >anyone think this walker would help? (What is it anyway?! Can Ethan's P.T >get >one!?) Thanks everyone! >Take Care >Hugs and Kisses > > > Kalakosky Ethan's >mommy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 , My son Reese is getting a gait trainer called the Miniwalk. It is made by mulholland. You can look at it (click on the word Meywalk) and the other gait trainer they have called the walkabout. Here is their web-site: http://www.mulhollandinc.com/ Both gait trainers are wonderful products. I went to the medical supply convention with my son's physical therapist this past fall and we both thought their products were much more user friendly and they offered unique features like spring suspension and larger indoor/outdoor wheels. Ask your therapist about them to see if your son is candidate for one. My son also has a prone stander for weight bearing, which was our first step in the process. Reese has left sided weakness also primarily because his PMG is largely on the right side of his brain. I hope that this helps.... -Meredith (Mom to Reese 19 months, Deletion 22q syndrome, Tetrollogy of Fallot w/PA and PMG) Question >Date: Sat, 22 Feb 2003 12:58:47 EST > >Good Morning everyone! I was browsing through some e-mail and saw a mom >mention a Hart walker and I am very curious to know about it. My son >Ethan is 2 1/2 and was diagnosed with PMG at 6 months old. He is not >walking >yet but I think alot has to do with his stroke he had back in July. (He has >a >little left sided weakness.) Now he was very close to walking right before >the stroke but now he hardly bears any weight at all. Any suggestions? Does >anyone think this walker would help? (What is it anyway?! Can Ethan's P.T >get >one!?) Thanks everyone! >Take Care >Hugs and Kisses > > > Kalakosky Ethan's >mommy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 , My son Reese is getting a gait trainer called the Miniwalk. It is made by mulholland. You can look at it (click on the word Meywalk) and the other gait trainer they have called the walkabout. Here is their web-site: http://www.mulhollandinc.com/ Both gait trainers are wonderful products. I went to the medical supply convention with my son's physical therapist this past fall and we both thought their products were much more user friendly and they offered unique features like spring suspension and larger indoor/outdoor wheels. Ask your therapist about them to see if your son is candidate for one. My son also has a prone stander for weight bearing, which was our first step in the process. Reese has left sided weakness also primarily because his PMG is largely on the right side of his brain. I hope that this helps.... -Meredith (Mom to Reese 19 months, Deletion 22q syndrome, Tetrollogy of Fallot w/PA and PMG) Question >Date: Sat, 22 Feb 2003 12:58:47 EST > >Good Morning everyone! I was browsing through some e-mail and saw a mom >mention a Hart walker and I am very curious to know about it. My son >Ethan is 2 1/2 and was diagnosed with PMG at 6 months old. He is not >walking >yet but I think alot has to do with his stroke he had back in July. (He has >a >little left sided weakness.) Now he was very close to walking right before >the stroke but now he hardly bears any weight at all. Any suggestions? Does >anyone think this walker would help? (What is it anyway?! Can Ethan's P.T >get >one!?) Thanks everyone! >Take Care >Hugs and Kisses > > > Kalakosky Ethan's >mommy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Sharon Macbeth: Thank you for your response. I live in Tucson, AZ and I believe there are a few places we can look into for walkers. I'm not too happy with my sons therapists or case manager at this time and we're working on transferring all of Ethan's care to the Mason clinic. I'm just curious if there's something I can do on my own without having to go through all the red tape...it just seems to take so long. We got a tumbleform chair for Ethan when he was quite young and by the time it was delivered, he didn't need it anymore!!! But thanks for the info!! I just can't wait to see him walk!! Kalakosky Mommy of Ethan 2 1/2: PMG MrsK143@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 I'll be happy to do that for you! Check tomorrow and see if your name isn't on the birthday calendar on the affirmations site! Hugs, PJ Kathleen wrote:How do I add birthday to calendar? My Birthday is September 17th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Kathleen, I went to add your birthday to the calendar, and Charlene already beat me to it! Your card should come next month! Hugs, PJ Kathleen wrote:How do I add birthday to calendar? My Birthday is September 17th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Hi friends.. I suffered from depression and panic attacks -- seriously about 20 years ago - but I do have flares every now and then. One thing I found that worked well for me was to acknowledge that I was UNABLE to do certain things when I got the attacks -- or was depressed -- but then -- I asked myself " What CAN I do? " Sometimes I was able to do laundry. Sometimes it was to pick up and put away one thing. Sometimes it was nothing more than taking a few deep breaths... but I did ask myself - and followed through on the answers I felt I had received. Some affirmations I found I could not do - because I didn't believe them. Like " I Am Rich " when I knew I wasn't. BUT - I was able to do ones like " I choose joy. " " I choose peace " " I choose to love and be loved " . " I am God's child and He loves me " I found these to be very helpful It's funny... I am packing to move right now - I have reunited with my childhood sweetheart after THIRTY YEARS -- and the children and I are moving to be with him right after Christmas. In him I have received my joy, my love and my peace - that I affirmed over and over for many months before I saw him. He - and his love for me -- are my treasures - and I am blessed. When I was packing things from my bathroom earlier today -- I came across what was left of my meds -- from 1988!!!! I didn't throw them away. I packed them. Just knowing they are there is kind of a security blanket - should I ever " fall off the wagon " and need them. (BTW - my uncle is an MD and told me that they would not hurt me being expired -- just they might not be as potent) I hope this helps someone... Love and Blessings, Colleen @}-->-->----------------- > >Are there any people on this list who are diagnosised with any type > >of mental illness-anxiety, depression, bipolar, etc. Anyone on > this > >list is any meds. I'm just curious. I am not having a good day, I > >didn't sleep well last night and don't feel good I wonder if you > all > >think that you have these problems that that affirmation and > >statements can override these more serious problems? ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Hi friends.. I suffered from depression and panic attacks -- seriously about 20 years ago - but I do have flares every now and then. One thing I found that worked well for me was to acknowledge that I was UNABLE to do certain things when I got the attacks -- or was depressed -- but then -- I asked myself " What CAN I do? " Sometimes I was able to do laundry. Sometimes it was to pick up and put away one thing. Sometimes it was nothing more than taking a few deep breaths... but I did ask myself - and followed through on the answers I felt I had received. Some affirmations I found I could not do - because I didn't believe them. Like " I Am Rich " when I knew I wasn't. BUT - I was able to do ones like " I choose joy. " " I choose peace " " I choose to love and be loved " . " I am God's child and He loves me " I found these to be very helpful It's funny... I am packing to move right now - I have reunited with my childhood sweetheart after THIRTY YEARS -- and the children and I are moving to be with him right after Christmas. In him I have received my joy, my love and my peace - that I affirmed over and over for many months before I saw him. He - and his love for me -- are my treasures - and I am blessed. When I was packing things from my bathroom earlier today -- I came across what was left of my meds -- from 1988!!!! I didn't throw them away. I packed them. Just knowing they are there is kind of a security blanket - should I ever " fall off the wagon " and need them. (BTW - my uncle is an MD and told me that they would not hurt me being expired -- just they might not be as potent) I hope this helps someone... Love and Blessings, Colleen @}-->-->----------------- > >Are there any people on this list who are diagnosised with any type > >of mental illness-anxiety, depression, bipolar, etc. Anyone on > this > >list is any meds. I'm just curious. I am not having a good day, I > >didn't sleep well last night and don't feel good I wonder if you > all > >think that you have these problems that that affirmation and > >statements can override these more serious problems? ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Hi friends.. I suffered from depression and panic attacks -- seriously about 20 years ago - but I do have flares every now and then. One thing I found that worked well for me was to acknowledge that I was UNABLE to do certain things when I got the attacks -- or was depressed -- but then -- I asked myself " What CAN I do? " Sometimes I was able to do laundry. Sometimes it was to pick up and put away one thing. Sometimes it was nothing more than taking a few deep breaths... but I did ask myself - and followed through on the answers I felt I had received. Some affirmations I found I could not do - because I didn't believe them. Like " I Am Rich " when I knew I wasn't. BUT - I was able to do ones like " I choose joy. " " I choose peace " " I choose to love and be loved " . " I am God's child and He loves me " I found these to be very helpful It's funny... I am packing to move right now - I have reunited with my childhood sweetheart after THIRTY YEARS -- and the children and I are moving to be with him right after Christmas. In him I have received my joy, my love and my peace - that I affirmed over and over for many months before I saw him. He - and his love for me -- are my treasures - and I am blessed. When I was packing things from my bathroom earlier today -- I came across what was left of my meds -- from 1988!!!! I didn't throw them away. I packed them. Just knowing they are there is kind of a security blanket - should I ever " fall off the wagon " and need them. (BTW - my uncle is an MD and told me that they would not hurt me being expired -- just they might not be as potent) I hope this helps someone... Love and Blessings, Colleen @}-->-->----------------- > >Are there any people on this list who are diagnosised with any type > >of mental illness-anxiety, depression, bipolar, etc. Anyone on > this > >list is any meds. I'm just curious. I am not having a good day, I > >didn't sleep well last night and don't feel good I wonder if you > all > >think that you have these problems that that affirmation and > >statements can override these more serious problems? ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 > Are there any people on this list who are diagnosised with any type > of mental illness-anxiety, depression, bipolar, etc. Anyone on this > list is any meds. I'm just curious. I am not having a good day, I > didn't sleep well last night and don't feel good I wonder if you all > think that you have these problems that that affirmation and > statements can override these more serious problems? ine Hi ine, I'm new to this list. I've been diagnosed with major depression, but took myself off meds (zoloft), several months ago. I joined this group to get as much positive impact in my life as I can. I've been going through some really tough times and really need some feedback like I get here & should probably be looking for the same in other parts of my life---but this group is a great start. I tried to break the depression thing on my own. I guess I can't, so I'm breaking down and going back on meds. But I don't expect the meds to do everything. I have to be proactive & that can be difficult, especially when depression is so immobilizing in itself. If just one message I read in this format helps me, then that's a lot, and I'm greatful for it. I think depression is as varied as the individuals who suffer from it. I don't think just one thing works. It's a combination of things and the levels of those things vary depending on the person--- and it's an ongoing struggle. It's a nice thought to think that if I hear just the right combination of words, I'll be able to handle life, but unfortunately it doesn't work that way. --- depression is something that has to be dealt with on a daily basis. I think this group is a valuable tool. For a lot of people, it might be all that they need. For me, I have to draw on all the positive resources I can. Look at it as a balanced diet and this group as one of the food groups. It has to work in conjunction with the others for you to feel your best. Sorry for a long-winded first post, but ine, I truly hope you find what works best for you. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 > Are there any people on this list who are diagnosised with any type > of mental illness-anxiety, depression, bipolar, etc. Anyone on this > list is any meds. I'm just curious. I am not having a good day, I > didn't sleep well last night and don't feel good I wonder if you all > think that you have these problems that that affirmation and > statements can override these more serious problems? ine Hi ine, I'm new to this list. I've been diagnosed with major depression, but took myself off meds (zoloft), several months ago. I joined this group to get as much positive impact in my life as I can. I've been going through some really tough times and really need some feedback like I get here & should probably be looking for the same in other parts of my life---but this group is a great start. I tried to break the depression thing on my own. I guess I can't, so I'm breaking down and going back on meds. But I don't expect the meds to do everything. I have to be proactive & that can be difficult, especially when depression is so immobilizing in itself. If just one message I read in this format helps me, then that's a lot, and I'm greatful for it. I think depression is as varied as the individuals who suffer from it. I don't think just one thing works. It's a combination of things and the levels of those things vary depending on the person--- and it's an ongoing struggle. It's a nice thought to think that if I hear just the right combination of words, I'll be able to handle life, but unfortunately it doesn't work that way. --- depression is something that has to be dealt with on a daily basis. I think this group is a valuable tool. For a lot of people, it might be all that they need. For me, I have to draw on all the positive resources I can. Look at it as a balanced diet and this group as one of the food groups. It has to work in conjunction with the others for you to feel your best. Sorry for a long-winded first post, but ine, I truly hope you find what works best for you. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 ine, I believe we have several people that would fit into these different categories you mentioned. But, as you know -- positive affirmations and positive thinking cannot fix everything. Some of us still need medications, some of us still need therapy, or some of us still need both. Positive thinking and affirmations can certainly help us with our attitude, but they cannot be " instead of " these other things. Also, Andre who is on our group has started doing therapy for people, and he would be interested in talking to any of you by email if you think you might need a therapist. I will send his email address next email. ine, I'm sorry that you are having a bad day, aren't feeling good, and didn't sleep well last night. Another thing is that lack of good sleep has proven to cause depression, anxiety, and a multitude of other symptoms. Hope you sleep much better tonight! I'll say a prayer for you, too. Love and Hugs, PJ shreiman wrote: Are there any people on this list who are diagnosised with any type of mental illness-anxiety, depression, bipolar, etc. Anyone on this list is any meds. I'm just curious. I am not having a good day, I didn't sleep well last night and don't feel good I wonder if you all think that you have these problems that that affirmation and statements can override these more serious problems? ine Quote Link to comment Share on other sites More sharing options...
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