Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 My Keri has both, PMG and CP, and I tell most people that. If they question, I explain. PMG is more than CP and I don't like the common answer to CP. And when someone asks how I deal with a retarted child (BOY DO I HATE THAT WORD!!!) I tell them they are the one who is retarted. My daughter is mentally challenged! Don't let anyone push you around. Your daughter has 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! pmg vs CEREBRAL PALSY On a recent weekly vist to one docter this being sophias local peadatrician her usual check up he went over the mri results with sarah i refuse to see him as on our first vist he just said that sophia brain wasnt growing , after doing tests like ofering her tiny little toys and her not taking them, i took this as bluntly as he said it ,ie not very well, but it turned out that he wasnt far off , so any how on this vist sophia took the toy first time , good girl , not quite written off yet , maybe it is me taking it to heart, or it is him being blunt but any how he talked about the mri results no mention off pmg just saying that it is cerebral palsy ,my qeustion to you guys is do you say pmg or CEREBRAL PALSy when asked what the children have, we now find it easier to say CEREBRAL PALSY peaple know what it is, sarah carl sophia 15 months pmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 I find that I tend to interchange between the two terms. Whilst most people have absolutely no idea what PMG is, they do have some clue about cerebral palsy.I don't think it really matters since PMG describes the specific brain disorder whereas cerebral palsy is a broad umbrella term. I just get sick of explaining PMG to people (including medical professionals), particularly when I know they're not really interested. They just want to be able to put our children into a neat little category. Good luck with the doctors. I know it's hard but try not to be too upset by what they say or how they come accross. I've certainly found that many specialist doctors appear to have absolutely no compassion when it comes to delivering upsetting news to parents. They give you the facts and that's about it. Somehow they manage to remove themselves from the emotional impact of what they're saying. And more often than not, they only see the childs limitations anyway. They read their textbooks and work with specifics. They don't like the unknown or the messy. I think they often view our extra efforts as a waste of time because to them, its a question of worth. These people think to themselves that since it's extremely unlikey that our children will ever be exceptional at anything (by a Drs standards), there's no point having hope and going the extra mile. Just accept it and move on. Concentrate on nuturing your other children so that they may excel. Well, I'm here to tell you that even the experts don't always know. I was quite bluntly told that my son probably wouldn't make his first birthday. He's now 6 1/2 years old. He runs, jumps, laughs and loves life. He is unable to speak but is a wizz with his " signing " and for those of us not 'clever' enough to understand sign, he's very good at charades!!! He goes to school, can count to 50, knows all his colours and sight words, can read fairly well and has an exceptional memory when it comes to things that he's interested in. Who cares that his fine motor skills are poor, that he drools and wears a bib, that he's clumsy, messy and not an accomplished eater? - he's happy, he's beautiful, his heart is full of love and compassion and he reminds me everyday of what's really important in life and how innocently beautiful a person can be before they're tarnished by the nastiness of others. Tara pmg vs CEREBRAL PALSY On a recent weekly vist to one docter this being sophias local peadatrician her usual check up he went over the mri results with sarah i refuse to see him as on our first vist he just said that sophia brain wasnt growing , after doing tests like ofering her tiny little toys and her not taking them, i took this as bluntly as he said it ,ie not very well, but it turned out that he wasnt far off , so any how on this vist sophia took the toy first time , good girl , not quite written off yet , maybe it is me taking it to heart, or it is him being blunt but any how he talked about the mri results no mention off pmg just saying that it is cerebral palsy ,my qeustion to you guys is do you say pmg or CEREBRAL PALSy when asked what the children have, we now find it easier to say CEREBRAL PALSY peaple know what it is, sarah carl sophia 15 months pmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 I usually say that Sam has a neurological disorder. Then if someone is truly interested, I will tell them PMG, and explain briefly. (Most people are not that interested.) It is a shame that so many doctors can't muster up a little tact. Especially a pediatrician! Don't listen to their pessimism, many of our children have proven their doctors wrong. Christie, mom to Sam (13 yrs old, BPP) pmg vs CEREBRAL PALSY On a recent weekly vist to one docter this being sophias local peadatrician her usual check up he went over the mri results with sarah i refuse to see him as on our first vist he just said that sophia brain wasnt growing , after doing tests like ofering her tiny little toys and her not taking them, i took this as bluntly as he said it ,ie not very well, but it turned out that he wasnt far off , so any how on this vist sophia took the toy first time , good girl , not quite written off yet , maybe it is me taking it to heart, or it is him being blunt but any how he talked about the mri results no mention off pmg just saying that it is cerebral palsy ,my qeustion to you guys is do you say pmg or CEREBRAL PALSy when asked what the children have, we now find it easier to say CEREBRAL PALSY peaple know what it is, sarah carl sophia 15 months pmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 In reading some of these post, it sounds like some of you have strangers just coming up and asking you what is wrong with your child. Is this true?! Occasionally a child may ask, in which case I generally say that Sam's mouth (or hand, depending on the question) muscles don't work really well. Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 dear tara. i couldn't agree with you more. when my first daughter caitlin was diagnosed with pmg at 3wks old she was recording 87 seizures in a 24hr period, the doctors discharged her home for us to enjoy what time we had with her, their estimate was maybe 3mths. within 48 hrs of being home the space between seizures had grown dramatically. although we went through some scary times with her her personality + strengths out shone any medical expectations. even when she was struggling to be healthy enough for surgery they looked at her chest x rays and over all health picture and told us to call our families, once again she proved them wrong, making it through surgery + back on the general ward in record time.. when we did loose her it wasn't with ill health, going very peacefully when all the family left leaving just her dad + i holding her. our doctor learned very quickly it doesn't matter what the medical books say, what did caitlin have to say.. I think thats why with sofie who also has pmg he's almost left us to get on with it but at the end of a phone if needed. take care, fiona, mum to sofie pmg + caitlin, angel with wings, pmg Tara Kennedy wrote: I find that I tend to interchange between the two terms. Whilst most people have absolutely no idea what PMG is, they do have some clue about cerebral palsy.I don't think it really matters since PMG describes the specific brain disorder whereas cerebral palsy is a broad umbrella term. I just get sick of explaining PMG to people (including medical professionals), particularly when I know they're not really interested. They just want to be able to put our children into a neat little category. Good luck with the doctors. I know it's hard but try not to be too upset by what they say or how they come accross. I've certainly found that many specialist doctors appear to have absolutely no compassion when it comes to delivering upsetting news to parents. They give you the facts and that's about it. Somehow they manage to remove themselves from the emotional impact of what they're saying. And more often than not, they only see the childs limitations anyway. They read their textbooks and work with specifics. They don't like the unknown or the messy. I think they often view our extra efforts as a waste of time because to them, its a question of worth. These people think to themselves that since it's extremely unlikey that our children will ever be exceptional at anything (by a Drs standards), there's no point having hope and going the extra mile. Just accept it and move on. Concentrate on nuturing your other children so that they may excel. Well, I'm here to tell you that even the experts don't always know. I was quite bluntly told that my son probably wouldn't make his first birthday. He's now 6 1/2 years old. He runs, jumps, laughs and loves life. He is unable to speak but is a wizz with his " signing " and for those of us not 'clever' enough to understand sign, he's very good at charades!!! He goes to school, can count to 50, knows all his colours and sight words, can read fairly well and has an exceptional memory when it comes to things that he's interested in. Who cares that his fine motor skills are poor, that he drools and wears a bib, that he's clumsy, messy and not an accomplished eater? - he's happy, he's beautiful, his heart is full of love and compassion and he reminds me everyday of what's really important in life and how innocently beautiful a person can be before they're tarnished by the nastiness of others. Tara pmg vs CEREBRAL PALSY On a recent weekly vist to one docter this being sophias local peadatrician her usual check up he went over the mri results with sarah i refuse to see him as on our first vist he just said that sophia brain wasnt growing , after doing tests like ofering her tiny little toys and her not taking them, i took this as bluntly as he said it ,ie not very well, but it turned out that he wasnt far off , so any how on this vist sophia took the toy first time , good girl , not quite written off yet , maybe it is me taking it to heart, or it is him being blunt but any how he talked about the mri results no mention off pmg just saying that it is cerebral palsy ,my qeustion to you guys is do you say pmg or CEREBRAL PALSy when asked what the children have, we now find it easier to say CEREBRAL PALSY peaple know what it is, sarah carl sophia 15 months pmg Quote Link to comment Share on other sites More sharing options...
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