Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Velma: Welcome to the group. It is a great source of information on all kinds of issues regarding PMG. I am not sure if anyone lives in your area or not, but Dr. Dobyns is an expert in the area of PMG. He is located in Chicago. I think someone here has his email address and many parents have contacted him and had their child's test results sent to him for evaluation. All I have is his telephone number. I recall that it does take some time for him to respond. We are planning on going to him sometime next year. Is seeing a neurologist? That is where we have gotten most of our information besides the many experts on this group! And we found our neurologist through a referal by Owen's pediatrician. You asked about the meds is taking, the only thing I can tell you is that each child is so very different. I think that has been the hardest part for us to accept because it makes it difficult to find information or glean hope as to what might happen in the future. It would be much easier to comprehend if there was enough consistency b/t each child, because then you would know what to expect. But one of the first things another parent from this group told me is that each child is so very different and you just have to take it one day at a time and learn to cherish all the smaller accomplishments. It was very good advise and in the past year I think we have learned to accept our son's situation much more. Owen is 14 mos old and is a very funny, happy little guy. He is cute as a bug and loves to entertain and hold an audience. He is fairly vocal but he is drastically behind in his motor skills. He is now able to hold his head up well and can sit for 30-40 minutes at a time on his own. He also just started really rolling from back to his stomach. He learned this in the bath tub first (well not totally on his stomach!) and just within the past three days he started doing it on the floor. This is very big news for us! He is in PT and OT twice per week which helps tremendously. Feel free to ask any questions you may have or to ask for support. I am still very new at this so I may not be able to help but I have learned a great deal from everyone on this group. Take care, Trish and Owen (14 mos with PMG) velma crochet wrote: HELLO EVERYONE, MY NAME IS VELMA I HAVE A SEVEN YEAR OLD DAUGHTER WITH PMG, NONVERBAL, EATING PROBLEMS, SEIZURES, HEADACHES, AND LOTS OF OTHER THINGS. MY FAMILY AND I ARE LOOKING FOR HELP WE CANT FIND A DOCTOR TO HELP US . WE LIVE IN JENNINGS,LA. VICTORIA IS MY ANGEL I WANT HER TO FEEL HAPPY AND NOT SICK , HURTING AND DIFFERENT. I JUST RECENTLY JOINED THIS GROUP I HOPE TO LEARN ALOT THANKS, VELMA AND VICTORIA --------------------------------- Do you Yahoo!? Check out the new Yahoo! Front Page. www.yahoo.com/a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Trish Thanks for the help we are blessed to have Tori but my heart breaks I would love the number to that doctor we see a nerolgist but he doesnt help alot my daughter walks and has stronger motor skills then most of the kids i have learned about on here but she has no vearble skills and her memory is so bad. thanks for the welcome i feel so much bettter to know im not alone velma Trish Gustafson wrote: Velma: Welcome to the group. It is a great source of information on all kinds of issues regarding PMG. I am not sure if anyone lives in your area or not, but Dr. Dobyns is an expert in the area of PMG. He is located in Chicago. I think someone here has his email address and many parents have contacted him and had their child's test results sent to him for evaluation. All I have is his telephone number. I recall that it does take some time for him to respond. We are planning on going to him sometime next year. Is seeing a neurologist? That is where we have gotten most of our information besides the many experts on this group! And we found our neurologist through a referal by Owen's pediatrician. You asked about the meds is taking, the only thing I can tell you is that each child is so very different. I think that has been the hardest part for us to accept because it makes it difficult to find information or glean hope as to what might happen in the future. It would be much easier to comprehend if there was enough consistency b/t each child, because then you would know what to expect. But one of the first things another parent from this group told me is that each child is so very different and you just have to take it one day at a time and learn to cherish all the smaller accomplishments. It was very good advise and in the past year I think we have learned to accept our son's situation much more. Owen is 14 mos old and is a very funny, happy little guy. He is cute as a bug and loves to entertain and hold an audience. He is fairly vocal but he is drastically behind in his motor skills. He is now able to hold his head up well and can sit for 30-40 minutes at a time on his own. He also just started really rolling from back to his stomach. He learned this in the bath tub first (well not totally on his stomach!) and just within the past three days he started doing it on the floor. This is very big news for us! He is in PT and OT twice per week which helps tremendously. Feel free to ask any questions you may have or to ask for support. I am still very new at this so I may not be able to help but I have learned a great deal from everyone on this group. Take care, Trish and Owen (14 mos with PMG) velma crochet wrote: HELLO EVERYONE, MY NAME IS VELMA I HAVE A SEVEN YEAR OLD DAUGHTER WITH PMG, NONVERBAL, EATING PROBLEMS, SEIZURES, HEADACHES, AND LOTS OF OTHER THINGS. MY FAMILY AND I ARE LOOKING FOR HELP WE CANT FIND A DOCTOR TO HELP US . WE LIVE IN JENNINGS,LA. VICTORIA IS MY ANGEL I WANT HER TO FEEL HAPPY AND NOT SICK , HURTING AND DIFFERENT. I JUST RECENTLY JOINED THIS GROUP I HOPE TO LEARN ALOT THANKS, VELMA AND VICTORIA --------------------------------- Do you Yahoo!? Check out the new Yahoo! Front Page. www.yahoo.com/a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Trish i forgot to mention tori goes to ot and speech and adated pe in schol she also goes to ot with horses once a week Trish Gustafson wrote:Velma: Welcome to the group. It is a great source of information on all kinds of issues regarding PMG. I am not sure if anyone lives in your area or not, but Dr. Dobyns is an expert in the area of PMG. He is located in Chicago. I think someone here has his email address and many parents have contacted him and had their child's test results sent to him for evaluation. All I have is his telephone number. I recall that it does take some time for him to respond. We are planning on going to him sometime next year. Is seeing a neurologist? That is where we have gotten most of our information besides the many experts on this group! And we found our neurologist through a referal by Owen's pediatrician. You asked about the meds is taking, the only thing I can tell you is that each child is so very different. I think that has been the hardest part for us to accept because it makes it difficult to find information or glean hope as to what might happen in the future. It would be much easier to comprehend if there was enough consistency b/t each child, because then you would know what to expect. But one of the first things another parent from this group told me is that each child is so very different and you just have to take it one day at a time and learn to cherish all the smaller accomplishments. It was very good advise and in the past year I think we have learned to accept our son's situation much more. Owen is 14 mos old and is a very funny, happy little guy. He is cute as a bug and loves to entertain and hold an audience. He is fairly vocal but he is drastically behind in his motor skills. He is now able to hold his head up well and can sit for 30-40 minutes at a time on his own. He also just started really rolling from back to his stomach. He learned this in the bath tub first (well not totally on his stomach!) and just within the past three days he started doing it on the floor. This is very big news for us! He is in PT and OT twice per week which helps tremendously. Feel free to ask any questions you may have or to ask for support. I am still very new at this so I may not be able to help but I have learned a great deal from everyone on this group. Take care, Trish and Owen (14 mos with PMG) velma crochet wrote: HELLO EVERYONE, MY NAME IS VELMA I HAVE A SEVEN YEAR OLD DAUGHTER WITH PMG, NONVERBAL, EATING PROBLEMS, SEIZURES, HEADACHES, AND LOTS OF OTHER THINGS. MY FAMILY AND I ARE LOOKING FOR HELP WE CANT FIND A DOCTOR TO HELP US . WE LIVE IN JENNINGS,LA. VICTORIA IS MY ANGEL I WANT HER TO FEEL HAPPY AND NOT SICK , HURTING AND DIFFERENT. I JUST RECENTLY JOINED THIS GROUP I HOPE TO LEARN ALOT THANKS, VELMA AND VICTORIA --------------------------------- Do you Yahoo!? Check out the new Yahoo! Front Page. www.yahoo.com/a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 I don't think Dr. Dobyns would be considered an expert in PMG as he told me he has only seen a few cases. But he is tops in Lissencephaly and he is researching PMG. He confers with a specialist in San Diego on PMG cases (as he did with my Keri's case). He is a wonderful doctor however and was great with Keri. Had I not been interested in finding a complete diagnosis on her, I would still think she had Lissencephaly instead of PMG. Doty Independent Consultant ~ Passion Elf www.passion-and-pleasure.net Tis the season to be LOVING! passions@... or Your passion connection ~ Educate, Enlighten, and Enhance Ignite your passion today! Want a little? Show a book! Want a lot? Book a show! Want it all? Become a consultant! Looking to make extra income each week? Ask me how! Re: VICTORIA MY ANGEL Velma: Welcome to the group. It is a great source of information on all kinds of issues regarding PMG. I am not sure if anyone lives in your area or not, but Dr. Dobyns is an expert in the area of PMG. He is located in Chicago. I think someone here has his email address and many parents have contacted him and had their child's test results sent to him for evaluation. All I have is his telephone number. I recall that it does take some time for him to respond. We are planning on going to him sometime next year. Is seeing a neurologist? That is where we have gotten most of our information besides the many experts on this group! And we found our neurologist through a referal by Owen's pediatrician. You asked about the meds is taking, the only thing I can tell you is that each child is so very different. I think that has been the hardest part for us to accept because it makes it difficult to find information or glean hope as to what might happen in the future. It would be much easier to comprehend if there was enough consistency b/t each child, because then you would know what to expect. But one of the first things another parent from this group told me is that each child is so very different and you just have to take it one day at a time and learn to cherish all the smaller accomplishments. It was very good advise and in the past year I think we have learned to accept our son's situation much more. Owen is 14 mos old and is a very funny, happy little guy. He is cute as a bug and loves to entertain and hold an audience. He is fairly vocal but he is drastically behind in his motor skills. He is now able to hold his head up well and can sit for 30-40 minutes at a time on his own. He also just started really rolling from back to his stomach. He learned this in the bath tub first (well not totally on his stomach!) and just within the past three days he started doing it on the floor. This is very big news for us! He is in PT and OT twice per week which helps tremendously. Feel free to ask any questions you may have or to ask for support. I am still very new at this so I may not be able to help but I have learned a great deal from everyone on this group. Take care, Trish and Owen (14 mos with PMG) velma crochet wrote: HELLO EVERYONE, MY NAME IS VELMA I HAVE A SEVEN YEAR OLD DAUGHTER WITH PMG, NONVERBAL, EATING PROBLEMS, SEIZURES, HEADACHES, AND LOTS OF OTHER THINGS. MY FAMILY AND I ARE LOOKING FOR HELP WE CANT FIND A DOCTOR TO HELP US . WE LIVE IN JENNINGS,LA. VICTORIA IS MY ANGEL I WANT HER TO FEEL HAPPY AND NOT SICK , HURTING AND DIFFERENT. I JUST RECENTLY JOINED THIS GROUP I HOPE TO LEARN ALOT THANKS, VELMA AND VICTORIA --------------------------------- Do you Yahoo!? Check out the new Yahoo! Front Page. www.yahoo.com/a Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.