Guest guest Report post Posted March 19, 2003 Welcome Charlotte! --- Charlotte wrote: > Hello Everyone, > I am new to the group, a dear sweet friend told me > about it. I look > forward to learning more, and growing as a person. > Thank you for > welcoming me. > Charlotte > > ===== Dance , when you're broken open Dance, if you've torn the bandage off Dance in the middle of the fighting. Dance, when you're perfectly free. --Rumi Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 20, 2003 Hello Charlotte! Welcome to the LWI group! As a dear sweet friend of yours, I am happy to see you joined this merry band of " sweeties " and " derelicts " . Best Wishes, Charlie > Hello Everyone, > I am new to the group, a dear sweet friend told me about it. I look > forward to learning more, and growing as a person. Thank you for > welcoming me. > Charlotte Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 30, 2003 Subject: Hello > As a newbie to this group, is there a " glossary " somewhere that explains all > the acronyms? For example, NADA, FOO and KO seem to be used a lot. Dear Cheryl: The war is not a trivial issue, but it is not completely relivant to all conversations. Just spent the day with my friend Pete, and he and I disagree, but I'm not in his face about it, and he's not in mine, and we get along fine despite our opposite politics. As for the acronyms, Edith posts a full explanation each month, but here's a short list. FOO -- Family Of Origin, as opposed to family of choice Nada -- " Not A " Mother, and Fada, not a father. Also means zero or nothing in Spanish. A nice pun. KO -- " Kid Of " a Borderline Hope that helps. Please feel free to write me offline. Thanks for writing. I know it's hard to do. --Maxx. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 30, 2003 > The war is not a trivial issue, but it is not completely relevant to > all conversations. I really believe that I could have a friendly relation with somebody who disagreed with me on this issue, but I am afraid to meet Americans now. I have had several very bad encounters where I opened my mouth and got treated like a traitor. I am told there are a number of other Americans living in my town but I haven't met a single one and don't want to. When I hear American English being spoken I try to keep quiet or stick to French and hope my accent isn't noticed. I believe that America is more divided now than at any time since the Civil War. I hope it can get past that. - Dan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 30, 2003 > The war is not a trivial issue, but it is not completely relevant to > all conversations. I really believe that I could have a friendly relation with somebody who disagreed with me on this issue, but I am afraid to meet Americans now. I have had several very bad encounters where I opened my mouth and got treated like a traitor. I am told there are a number of other Americans living in my town but I haven't met a single one and don't want to. When I hear American English being spoken I try to keep quiet or stick to French and hope my accent isn't noticed. I believe that America is more divided now than at any time since the Civil War. I hope it can get past that. - Dan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 11, 2004 Re: Hello , Has an MD see your Mom? Most places have either County nurses or you pay a fee for an MD service that will come to the home. You also sound like you are about ready for Hospice service if you want it. THey also have medical people who come to the home. Having Hospice come and checking out what they have to say, does not mean you have to go on. You can see if she will be eligible and then decide if you want to put her on. You might have a better feel for what they say regarding you Mom. Not eating and sleeping for three days at a time sound pretty far down the road. Do not know if this is helpful but hope so. Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 26, 2006 Hello Diane, I have not been to that Doctor, I am on my second one. was diagnosed in September and today it the 1st day I am taking ATD. Methimaxole, 10mg, aks Tapaole. and also Toprol 25mg for heart palps. No one knows your body more than you. When we get sick, generally we go to the doctors for the name of our ailment and for confirmation. So if you feel that other things are a result triggered by something, then it is probably true. Someone told me that everybody is different (true enough) but If a person as not experienced a certain thing, then they really can't rule it out, can they. Go ahead and check out this support group. It has helped me tremendously as I was almost talked into the RAI treatment. My latest lab is T3 Total 464 Normal 60-181 T3 Uptake 41 22-35 T4 Free 0.8-1.8 TSH <0.01 Hope this helps AudreyDiane Whitaker wrote: Hi Everyone! Thanks for including me in your group. My nickname is Lynn and I live in Friendswood (South of Houston). I have just recently started looking online to see if I can get any helpful information on my type of health situation. I have been to five endos (first appointment with the sixth one is on 2/27) and am still not where I want to be. I currently take 88mcg of Levoxyl. I also take many supplements that I get from a wholistic doctor. There are two problems that I struggle with: One - I feel like my thyroid fluctuates causing me to have good days followed by bad days and on and on and on... The doctors insist that is not possible. I haven't felt 100% since starting the thyroid replacement (I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too high with that. Two - I continue to have digestive problems (nausea, bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and found nothing. I think the thyroid has something to do with it (thyroid > metabolism > digestion), but no one else agrees with me. It feels like when I eat, the food just sits in my stomach and causes me to feel bad. I've tried manipulating/restricting my diet in so many ways that I want to scream - still no pattern. I have just stared looking into taking T3 along with the my Levoxyl. When I asked my doctor about it, he said that I don't need any T3 because my "numbers look fabulous" and that they will see me in June. Hence we move to doctor #6. I've made an appointment with Dr. in Houston. Has anyone been to him? Here are my latest lab results: T4 Free 1.3 (0.61-1.76) TSH 1.024 (0.35-5.5) Triiodothyronine 85 (85-205) Thanks for listening and please let me know if you have any advice. Lynn Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2006 Lynn, Welcome! First dump the Endo. They are the worst. Most people get better treatment from a GP. Your digestive problems are hypo. If you doctors don't understand this, then you need to run far away from them. I would go to a GP demand Armour. I'm in Missouri City. I work and go to church in Pearland. Kate At 12:22 PM 1/26/2006, you wrote: >Hi Everyone! >Thanks for including me in your group. My nickname is Lynn and I live in >Friendswood (South of Houston). I have just recently started looking >online to see if I can get any helpful information on my type of health >situation. I have been to five endos (first appointment with the sixth >one is on 2/27) and am still not where I want to be. I currently take >88mcg of Levoxyl. I also take many supplements that I get from a >wholistic doctor. There are two problems that I struggle with: One - I >feel like my thyroid fluctuates causing me to have good days followed by >bad days and on and on and on... The doctors insist that is not >possible. I haven't felt 100% since starting the thyroid replacement >(I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too >high with that. Two - I continue to have digestive problems (nausea, >bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and >found nothing. I think the thyroid has something to do with it >(thyroid > metabolism > digestion), but no one else agrees with me. It >feels like when I eat, the food just sits in my stomach and causes me to >feel bad. I've tried manipulating/restricting my diet in so many ways that >I want to scream - still no pattern. > >I have just stared looking into taking T3 along with the my Levoxyl. When >I asked my doctor about it, he said that I don't need any T3 because my > " numbers look fabulous " and that they will see me in June. Hence we move >to doctor #6. I've made an appointment with Dr. in >Houston. Has anyone been to him? > >Here are my latest lab results: >T4 Free 1.3 (0.61-1.76) >TSH 1.024 (0.35-5.5) >Triiodothyronine 85 (85-205) > >Thanks for listening and please let me know if you have any advice. > >Lynn Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2006 Actually, Lynn, that third # DOES look terrible, and it IS your Free T3 (triiodothyronine), and you ARE on just exactly the right track, to boot. The way we know this is this----Look at your Free T4, it is in a mid to higher range, not high but midrange or higher. Normally, with a T4 this high, the Free T3 would be very much proportionally higher, but yours, instead is sitting at rock bottom, right at the abnormally low cusp, so count it low. In other words, you are not converting your T4 to T3 properly, and T3 is the form that is the most used, so you ARE right, you do need T3, it is so obvious from this testing. Do you take selenium or eat high amts of Brazil nuts or the like? Selenium is well known to help with T4 to T3 conversion. As a matter of fact, we can't convert without it. That's just one angle, that prevents you from converting sufficiently. Looking at YOUR test results, I'd say that you probably need the Armour Thyroid or T3 added to your T4. What about liver problems or liver enzymes? Hello Hi Everyone! Thanks for including me in your group. My nickname is Lynn and I live in Friendswood (South of Houston). I have just recently started looking online to see if I can get any helpful information on my type of health situation. I have been to five endos (first appointment with the sixth one is on 2/27) and am still not where I want to be. I currently take 88mcg of Levoxyl. I also take many supplements that I get from a wholistic doctor. There are two problems that I struggle with: One - I feel like my thyroid fluctuates causing me to have good days followed by bad days and on and on and on... The doctors insist that is not possible. I haven't felt 100% since starting the thyroid replacement (I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too high with that. Two - I continue to have digestive problems (nausea, bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and found nothing. I think the thyroid has something to do with it (thyroid > metabolism > digestion), but no one else agrees with me. It feels like when I eat, the food just sits in my stomach and causes me to feel bad. I've tried manipulating/restricting my diet in so many ways that I want to scream - still no pattern. I have just stared looking into taking T3 along with the my Levoxyl. When I asked my doctor about it, he said that I don't need any T3 because my "numbers look fabulous" and that they will see me in June. Hence we move to doctor #6. I've made an appointment with Dr. in Houston. Has anyone been to him? Here are my latest lab results: T4 Free 1.3 (0.61-1.76) TSH 1.024 (0.35-5.5) Triiodothyronine 85 (85-205) Thanks for listening and please let me know if you have any advice. Lynn Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2006 That range is for a Total T3, not a Free T3. And yes it is in the basement. I suspect her Free T3 would be even lower. wrote: Actually, Lynn, that third # DOES look terrible, and it IS your Free T3 (triiodothyronine), and you ARE on just exactly the right track, to boot. The way we know this is this----Look at your Free T4, it is in a mid to higher range, not high but midrange or higher. Normally, with a T4 this high, the Free T3 would be very much proportionally higher, but yours, instead is sitting at rock bottom, right at the abnormally low cusp, so count it low. In other words, you are not converting your T4 to T3 properly, and T3 is the form that is the most used, so you ARE right, you do need T3, it is so obvious from this testing. Do you take selenium or eat high amts of Brazil nuts or the like? Selenium is well known to help with T4 to T3 conversion. As a matter of fact, we can't convert without it. That's just one angle, that prevents you from converting sufficiently. Looking at YOUR test results, I'd say that you probably need the Armour Thyroid or T3 added to your T4. What about liver problems or liver enzymes? Hello Hi Everyone! Thanks for including me in your group. My nickname is Lynn and I live in Friendswood (South of Houston). I have just recently started looking online to see if I can get any helpful information on my type of health situation. I have been to five endos (first appointment with the sixth one is on 2/27) and am still not where I want to be. I currently take 88mcg of Levoxyl. I also take many supplements that I get from a wholistic doctor. There are two problems that I struggle with: One - I feel like my thyroid fluctuates causing me to have good days followed by bad days and on and on and on... The doctors insist that is not possible. I haven't felt 100% since starting the thyroid replacement (I've taken Armour, Synthroid, and Levoxyl), but maybe my hopes are too high with that. Two - I continue to have digestive problems (nausea, bloating, gurgling, burning) eventhough my GI doctor ran MANY tests and found nothing. I think the thyroid has something to do with it (thyroid > metabolism > digestion), but no one else agrees with me. It feels like when I eat, the food just sits in my stomach and causes me to feel bad. I've tried manipulating/restricting my diet in so many ways that I want to scream - still no pattern. I have just stared looking into taking T3 along with the my Levoxyl. When I asked my doctor about it, he said that I don't need any T3 because my "numbers look fabulous" and that they will see me in June. Hence we move to doctor #6. I've made an appointment with Dr. in Houston. Has anyone been to him? Here are my latest lab results: T4 Free 1.3 (0.61-1.76) TSH 1.024 (0.35-5.5) Triiodothyronine 85 (85-205) Thanks for listening and please let me know if you have any advice. Lynn What are the most popular cars? Find out at Yahoo! Autos Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 17, 2006 hey just wanted to let ya know i'm so sorry to hear about your loss and i'm praying for you. i know you don't even know me but i can't imagine what you must be going through right now. i started rituxan about 3 mo. ago and it hasn't worked yet. how long did it take you initally to start working for you? i hope that when you get your next treatment that you will be feeling better soon but as we all know stress doesn't help. sometimes i say how can you live without stress!! take care of yourself monique wrote: Hello everyone, I know I haven't post in a long while, so I thought I would let all know how I am doing. Today is a very bad day for me. I recieved a phone call this morning from my little sister's mom informing me that my dad had passed away. I hadn't talked or seen my dad since I was younger. But He was still my dad and I did love him no matter what. I do remember a little bit about him being there when I was younger. I will be leaving for washington state on the 23rd. I have all ready talked to my grandma that I hadn't talked to for a few years now, but also got more bad news while talking to her. She informed me that my dad's younger brother passed away two months ago. So today is just not a good day. As for the rest of me. I do believe the rituxan is starting to wear off. I go in on tuesday for a injection. At that time I will set up a date for another rituxan treatment. Also I am still trying to decided if I will have my other shoulder replaced this year. The last couple of weeks it has givin me a lot of trouble, but I do believe that is because of the rituxan wearing off. I was really feeling great there for awhile. Better then I had for some time. Well I am going to go for now. until next time take care. __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2006 hang in there will b praying for u Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 14, 2007 Hi Natasha I am sorry I am a bit late replying. I am very sorry to hear that your friend is suffering so much and has been for a very long time. It must be so difficult with 3 small children. I wondered if there might be someone who could lend her a laptop just for a short while so that she could see if she was able to operate one as I am sure that if she could communicate with other stills sufferers she would not feel so alone and of course we would be more than happy to help if we could. I would like to add that I think she is very lucky to have such a caring friend as you. Best wishes to you both. Take care Joan U.K. _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of natasha peebles Sent: 09 January 2007 09:42 To: stillsdisease Subject: hello hi i would just like to introduce myself my name is natasha and i live in north east england and it is my best friend who was diagnosed with stills in jan 05. im not quite sure what meds she is currently taking, however i know she has been on many different types including methetrexate which didnt really help her. all i do know is that she has to inject herself, i will ask her tommorrow when i vist her in hosp. she has been in hospital for most of the past two years as her flares seem constant. she maybe goes for a few weeks at a time without one at the most. she is 27 years old and has 3 young children aged 5, 3 and 2 and has been really ill ever since she was diagnosed. she hasnt got a computer and to be honest i dont know if she would be well enough to use one as she spends alot of her time in bed but im going to try and persuade her to buy one and join this group as i believe that she would enjoy being able to swap experiences and gain comfort from such a warm and supportful group. natasha __________________________________________________________ __________________________________________________________ Be the first to hear what's new at MSN - sign up to our free newsletters! http://www.msn. <http://www.msn.co.uk/newsletters> co.uk/newsletters Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 14, 2007 Hi Natasha I am sorry I am a bit late replying. I am very sorry to hear that your friend is suffering so much and has been for a very long time. It must be so difficult with 3 small children. I wondered if there might be someone who could lend her a laptop just for a short while so that she could see if she was able to operate one as I am sure that if she could communicate with other stills sufferers she would not feel so alone and of course we would be more than happy to help if we could. I would like to add that I think she is very lucky to have such a caring friend as you. Best wishes to you both. Take care Joan U.K. _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of natasha peebles Sent: 09 January 2007 09:42 To: stillsdisease Subject: hello hi i would just like to introduce myself my name is natasha and i live in north east england and it is my best friend who was diagnosed with stills in jan 05. im not quite sure what meds she is currently taking, however i know she has been on many different types including methetrexate which didnt really help her. all i do know is that she has to inject herself, i will ask her tommorrow when i vist her in hosp. she has been in hospital for most of the past two years as her flares seem constant. she maybe goes for a few weeks at a time without one at the most. she is 27 years old and has 3 young children aged 5, 3 and 2 and has been really ill ever since she was diagnosed. she hasnt got a computer and to be honest i dont know if she would be well enough to use one as she spends alot of her time in bed but im going to try and persuade her to buy one and join this group as i believe that she would enjoy being able to swap experiences and gain comfort from such a warm and supportful group. natasha __________________________________________________________ __________________________________________________________ Be the first to hear what's new at MSN - sign up to our free newsletters! http://www.msn. <http://www.msn.co.uk/newsletters> co.uk/newsletters Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2007 Annette, Keep the positive attitude going and don't let anyone get you down!! I know you will have your days, we all do, but those are just momentary and due to the stress of having a special needs child. If you have seen the progress from that is all that matters. Doctors give the worse case scenario and I wouldn't think a Genetists should be saying those things but people do like to give their two cents. And you were right in saying that they see our kids for such a short amount of time and then feel it necessary to tell us devastating things after we have told them positive things regarding the progress of our child. They just don't understand and no one really can unless they have been in our situation. Have you taken to a Physical Medicine and Rehabilitation (Physiatrist sp?) doctor? We have found that this doctor has been able to give us the best information. Another good place for information is Dr. Dobyns...has her reviewed s records, MRI?? He is out of Chicago and works with the Walsh Lab and will review records free of charge via you sending them in. He does like to see the actual films of the MRI instead of emailed or scanned onto a CD images. I believe that every child with these problems our kids have, PMG, CP, Seizures, etc. present differently and no two are the same but you know your child better than anyone and if you see progress then that is progress and more progress can be made. I would ask the therapists for what they see being able to do in the future. I have found the therapists to be very valuable in this area of projecting out what our daughter is going to be able to do because they see numerous kids with these special conditions and have the knowledge. Another thing to look into is intense PT like Euro Peds and Suit Therapy and intense schooling at a Conductive Education center. We are starting at the Conductive Education center in Grand Rapids, MI this coming Monday for our first session and I am so excited. I will post more on what we find out when we are there and are doing the program but I have high hopes for this program to help our daughter further succeed. Take care, and Alyssa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2007 Annette, I don't think anyone can tell you what abilities your son will have in the future and what level of functioning he will achieve. PMG presents differently in each child. There is a wide range of the degree it affects a child. It ranges from no symptoms at all to severe mental and physical limitations. There is at least one adult in this group that has PMG that found out just recently. I also have a son named with PMG. He is 9 now and doing pretty well. He talks, runs, does math, plays video games, rides a bike and does pretty much anything else a normal 9 year old does, just a little slower. The first doctor we saw after the diagnosis was a developmental pediatrician. She had reviewed the MRI before seeing . When walked in to the office, she didn't believe it was him because she thought he would be in a wheelchair. She went on to tell us that by looking at the MRI only, she assumed would be severely handicapped. My point is that you should not allow the experts to tell you that your son will never do certain things because they just don't know. You have to be realistic but optimistic and try to help your son the achieve his full potential. My son is probably an exception, but if we accepted some of the doctors predictions, we would never had pushed him to achieve because it would just be a waste of time. -Steve luvthebuckii wrote: My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months old. I found this group shortly after his diagnosis and have found it comforting to know there are others out there dealing with this diagnosis on a daily basis and thriving which gives me hope and also knowing there are others out there struggling with this diagnosis as it allows me to know I am not alone. I want to thank all of you for sharing your stories and your information, as we have gotten little info on PMG from any of our doctors. You are truly amazing people. Here is our story. was born at 38 weeks after a normal, uneventful pregnancy. He is a wonderful little guy who is very tolerant of most things and his smiles are contagious. I suspected something was wrong with his development at around 6 months. Although his ped. thought he was just a lazy baby, she made referrals based on my concerns. We had a head xray done that came back normally and then an MRI which gave us our dreaded label of PMG. I have searched for info on PMG and found very little. I have been in contact with the Walsh lab in Boston and am waiting to hear back from them. Has anyone been to the brain malformation clinic in Boston? We are currently petitioning our insurance to pay for a visit there. My main hope has been to find where in the spectrum of PMG that 's condition lays, so that I can be realistic about his development and progress. Throughout our barrage of appointments the only doctor we have seen thus far with any experience with PMG has been the geneticist. We saw him right around 's first birthday and they order many tests that all came back normal, so they have found no underlying etiology for the PMG. Because he has seemed the only one with info on PMG, I was anxious for the 15 month follow up visit that we had yesterday. At that appointment, the Dr. told me pretty matter-of-factly that would not be high functioning and that he probably wouldn't progress much more than he has. I was devastated. We have received nothing but good reports from our therapists and EI teacher (who wrote in large letters across her most recent report " A lot of Progress!! " ). currently does not consistently roll over or roll over on his own. His head control and reaching abilities have improved greatly over the last few months. has never had feeding troubles. He eats stage 2 and 3 baby foods and many mashed table foods. He does not feed himself with his fingers, but has occasionally wrestled his spoon away from whomever is feeding him and has put it into his mouth to try to get off whatever is stuck to it. He sits in a tripod and tries to lift his arms to reach while sitting. He doesn't talk or say consonants, but he does try to " aaaah " back and forth with myself or my husband when we talk with him. loves to watch other kids and is very interested in what others are doing. He can pass objects back and forth between hands, can bang two objects and shakes his maracas. He can pick objects out of a bowl or container. My question for you the experts is, what are real expectations for a 15 month old with PMG and his current accomplishments? I refuse to believe I am wasting my time with the therapy appts. and all the work we do with him at home. I understand that he probably won't go to college or play sports, but there has to be something in between. My husband believes that this Dr. made his prediction based only on seeing for 10 minutes, not by working with for 10 minutes. I too put more weight in what his therapists say because they work with him more often and have developed a relationship with him. However, I feel I need some realistic advice based on his diagnosis as well and they do not look at diagnosis when working with the kids. I'll admit that is probably a good thing, but still would like to hear some input from the experts in this area - you the parents that work with these special kids everyday. I am sorry that this message was so long, but appreciate you taking the time to read about our story and I welcome any advice you may have for us at this time. Thank you and God bless all of the children and families dealing with PMG and other disabilities. Annette --------------------------------- Have a burning question? Go to Yahoo! Answers and get answers from real people who know. 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Guest guest Report post Posted January 27, 2007 Annette, Steve is right. Don't listen to people if they tell you that will never amount to anything. My daughter Crystal is also almost 9 years old. She's not doing as well as Steve's is, but she can walk & she does love to play. Her smile can light up a room. I believe that the reason she hasn't developed as far as did, is because of her seizures. They have never been completely controlled, no matter how hard her doctors ( & us ) have tried. Hang in there, you will get through this. Love to you all... & Crystal Aquielle - almost 9 years old - BPP grade 3 - intractable seizures - g-tube - and VNS - and a smile that lights up our world. My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months old. > I found this group shortly after his diagnosis and have found it comforting to know there > are others out there dealing with this diagnosis on a daily basis and thriving which gives > me hope and also knowing there are others out there struggling with this diagnosis as it > allows me to know I am not alone. I want to thank all of you for sharing your stories and > your information, as we have gotten little info on PMG from any of our doctors. You are > truly amazing people. > > Here is our story. was born at 38 weeks after a normal, uneventful pregnancy. He > is a wonderful little guy who is very tolerant of most things and his smiles are contagious. > I suspected something was wrong with his development at around 6 months. Although his > ped. thought he was just a lazy baby, she made referrals based on my concerns. We had a > head xray done that came back normally and then an MRI which gave us our dreaded label > of PMG. I have searched for info on PMG and found very little. I have been in contact with > the Walsh lab in Boston and am waiting to hear back from them. Has anyone been to the > brain malformation clinic in Boston? We are currently petitioning our insurance to pay for > a visit there. My main hope has been to find where in the spectrum of PMG that 's > condition lays, so that I can be realistic about his development and progress. > > Throughout our barrage of appointments the only doctor we have seen thus far with any > experience with PMG has been the geneticist. We saw him right around 's first > birthday and they order many tests that all came back normal, so they have found no > underlying etiology for the PMG. Because he has seemed the only one with info on PMG, I > was anxious for the 15 month follow up visit that we had yesterday. At that appointment, > the Dr. told me pretty matter-of-factly that would not be high functioning and > that he probably wouldn't progress much more than he has. I was devastated. We have > received nothing but good reports from our therapists and EI teacher (who wrote in large > letters across her most recent report " A lot of Progress!! " ). currently does not > consistently roll over or roll over on his own. His head control and reaching abilities have > improved greatly over the last few months. has never had feeding troubles. He > eats stage 2 and 3 baby foods and many mashed table foods. He does not feed himself > with his fingers, but has occasionally wrestled his spoon away from whomever is feeding > him and has put it into his mouth to try to get off whatever is stuck to it. He sits in a > tripod and tries to lift his arms to reach while sitting. He doesn't talk or say consonants, > but he does try to " aaaah " back and forth with myself or my husband when we talk with > him. loves to watch other kids and is very interested in what others are doing. He > can pass objects back and forth between hands, can bang two objects and shakes his > maracas. He can pick objects out of a bowl or container. > > My question for you the experts is, what are real expectations for a 15 month old with > PMG and his current accomplishments? I refuse to believe I am wasting my time with the > therapy appts. and all the work we do with him at home. I understand that he probably > won't go to college or play sports, but there has to be something in between. My > husband believes that this Dr. made his prediction based only on seeing for 10 > minutes, not by working with for 10 minutes. I too put more weight in what his > therapists say because they work with him more often and have developed a relationship > with him. However, I feel I need some realistic advice based on his diagnosis as well and > they do not look at diagnosis when working with the kids. I'll admit that is probably a > good thing, but still would like to hear some input from the experts in this area - you the > parents that work with these special kids everyday. > > I am sorry that this message was so long, but appreciate you taking the time to read about > our story and I welcome any advice you may have for us at this time. > Thank you and God bless all of the children and families dealing with PMG and other > disabilities. > Annette > > > > > > > --------------------------------- > Have a burning question? Go to Yahoo! Answers and get answers from real people who know. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2007 Annette, Do not listen to the doctors!!! Jenna's doctors all told us the same thing about Jenna but she has made tremendous progress and her neurologist was VERY surprised to see her doing what she is doing now. Jenna is 4 and a half years old. She walks, she talks (delayed but getting better), she eats normal food and is not tube fed. However she is not too good with utensils yet, she is making progress there too. She had seizures for awhile but they were controlled by medicine and is now seizure free. She is not potty trained but we believe that she will be some day. Basically, Jenna is a 2 year old in a 4 year old body. Jenna is in O.T., P.T. and on a waiting list to enter speech therapy again. She attends special needs preschool 4 days a week and will go to special needs Kindergarten next school year. All of our kids are different. Some are more severely affected than others but to look at Jenna's MRI, you would think she would be a vegetable. That is what her Neurologist said to us. Dr Dobyns said over 3/4 of her brain was affected with PMG and he even gave us a grim outlook but Jenna has defied them all. Our kids have strong spirits...do not let the doctors dictate your sons future...allow God to do that. I hope that helps and good luck with all the challenges that lie ahead. We will be here for your support. and Jenna Hello My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months old. I found this group shortly after his diagnosis and have found it comforting to know there are others out there dealing with this diagnosis on a daily basis and thriving which gives me hope and also knowing there are others out there struggling with this diagnosis as it allows me to know I am not alone. I want to thank all of you for sharing your stories and your information, as we have gotten little info on PMG from any of our doctors. You are truly amazing people. Here is our story. was born at 38 weeks after a normal, uneventful pregnancy. He is a wonderful little guy who is very tolerant of most things and his smiles are contagious. I suspected something was wrong with his development at around 6 months. Although his ped. thought he was just a lazy baby, she made referrals based on my concerns. We had a head xray done that came back normally and then an MRI which gave us our dreaded label of PMG. I have searched for info on PMG and found very little. I have been in contact with the Walsh lab in Boston and am waiting to hear back from them. Has anyone been to the brain malformation clinic in Boston? We are currently petitioning our insurance to pay for a visit there. My main hope has been to find where in the spectrum of PMG that 's condition lays, so that I can be realistic about his development and progress. Throughout our barrage of appointments the only doctor we have seen thus far with any experience with PMG has been the geneticist. We saw him right around 's first birthday and they order many tests that all came back normal, so they have found no underlying etiology for the PMG. Because he has seemed the only one with info on PMG, I was anxious for the 15 month follow up visit that we had yesterday. At that appointment, the Dr. told me pretty matter-of-factly that would not be high functioning and that he probably wouldn't progress much more than he has. I was devastated. We have received nothing but good reports from our therapists and EI teacher (who wrote in large letters across her most recent report " A lot of Progress!! " ). currently does not consistently roll over or roll over on his own. His head control and reaching abilities have improved greatly over the last few months. has never had feeding troubles. He eats stage 2 and 3 baby foods and many mashed table foods. He does not feed himself with his fingers, but has occasionally wrestled his spoon away from whomever is feeding him and has put it into his mouth to try to get off whatever is stuck to it. He sits in a tripod and tries to lift his arms to reach while sitting. He doesn't talk or say consonants, but he does try to " aaaah " back and forth with myself or my husband when we talk with him. loves to watch other kids and is very interested in what others are doing. He can pass objects back and forth between hands, can bang two objects and shakes his maracas. He can pick objects out of a bowl or container. My question for you the experts is, what are real expectations for a 15 month old with PMG and his current accomplishments? I refuse to believe I am wasting my time with the therapy appts. and all the work we do with him at home. I understand that he probably won't go to college or play sports, but there has to be something in between. My husband believes that this Dr. made his prediction based only on seeing for 10 minutes, not by working with for 10 minutes. I too put more weight in what his therapists say because they work with him more often and have developed a relationship with him. However, I feel I need some realistic advice based on his diagnosis as well and they do not look at diagnosis when working with the kids. I'll admit that is probably a good thing, but still would like to hear some input from the experts in this area - you the parents that work with these special kids everyday. I am sorry that this message was so long, but appreciate you taking the time to read about our story and I welcome any advice you may have for us at this time. Thank you and God bless all of the children and families dealing with PMG and other disabilities. Annette Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2007 I will tell you this. My son who is 18 months old has PMG on 80% of his brain. Every child is different. The dr.s say that if they just looked at his MRI they would expect to walk into the examination room and see a child in a vegetative state not being able to do anything. does have delays, but is also doing many many things that the dr's are all shocked that he is doing. He smiles, he knows who we are, he is a wonderful child. Just because someone labels your child with PMG, don't give up. Start therapies, do as much with your child as you can...and don't stop giving working at it. Just wanted to let you know that the dr's aren't always right, and they can't see into the future. Mom to www.danielspranger.com _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of luvthebuckii Sent: Saturday, January 27, 2007 8:35 AM To: polymicrogyria Subject: Hello My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months old. I found this group shortly after his diagnosis and have found it comforting to know there are others out there dealing with this diagnosis on a daily basis and thriving which gives me hope and also knowing there are others out there struggling with this diagnosis as it allows me to know I am not alone. I want to thank all of you for sharing your stories and your information, as we have gotten little info on PMG from any of our doctors. You are truly amazing people. Here is our story. was born at 38 weeks after a normal, uneventful pregnancy. He is a wonderful little guy who is very tolerant of most things and his smiles are contagious. I suspected something was wrong with his development at around 6 months. Although his ped. thought he was just a lazy baby, she made referrals based on my concerns. We had a head xray done that came back normally and then an MRI which gave us our dreaded label of PMG. I have searched for info on PMG and found very little. I have been in contact with the Walsh lab in Boston and am waiting to hear back from them. Has anyone been to the brain malformation clinic in Boston? We are currently petitioning our insurance to pay for a visit there. My main hope has been to find where in the spectrum of PMG that 's condition lays, so that I can be realistic about his development and progress. Throughout our barrage of appointments the only doctor we have seen thus far with any experience with PMG has been the geneticist. We saw him right around 's first birthday and they order many tests that all came back normal, so they have found no underlying etiology for the PMG. Because he has seemed the only one with info on PMG, I was anxious for the 15 month follow up visit that we had yesterday. At that appointment, the Dr. told me pretty matter-of-factly that would not be high functioning and that he probably wouldn't progress much more than he has. I was devastated. We have received nothing but good reports from our therapists and EI teacher (who wrote in large letters across her most recent report " A lot of Progress!! " ). currently does not consistently roll over or roll over on his own. His head control and reaching abilities have improved greatly over the last few months. has never had feeding troubles. He eats stage 2 and 3 baby foods and many mashed table foods. He does not feed himself with his fingers, but has occasionally wrestled his spoon away from whomever is feeding him and has put it into his mouth to try to get off whatever is stuck to it. He sits in a tripod and tries to lift his arms to reach while sitting. He doesn't talk or say consonants, but he does try to " aaaah " back and forth with myself or my husband when we talk with him. loves to watch other kids and is very interested in what others are doing. He can pass objects back and forth between hands, can bang two objects and shakes his maracas. He can pick objects out of a bowl or container. My question for you the experts is, what are real expectations for a 15 month old with PMG and his current accomplishments? I refuse to believe I am wasting my time with the therapy appts. and all the work we do with him at home. I understand that he probably won't go to college or play sports, but there has to be something in between. My husband believes that this Dr. made his prediction based only on seeing for 10 minutes, not by working with for 10 minutes. I too put more weight in what his therapists say because they work with him more often and have developed a relationship with him. However, I feel I need some realistic advice based on his diagnosis as well and they do not look at diagnosis when working with the kids. I'll admit that is probably a good thing, but still would like to hear some input from the experts in this area - you the parents that work with these special kids everyday. I am sorry that this message was so long, but appreciate you taking the time to read about our story and I welcome any advice you may have for us at this time. Thank you and God bless all of the children and families dealing with PMG and other disabilities. Annette Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2007 I agree that the seizures are the most debilitating aspect of PMG. My was doing very well until the seizures started at age 5. He had no delays except the weakness in his right side. He was in normal kindergarten doing well. After the seizures started, he regressed. I think it is important to have an aggressive treatment plan for the seizures since they seem to do the most damage to our children. -Steve wrote: Annette, Steve is right. Don't listen to people if they tell you that will never amount to anything. My daughter Crystal is also almost 9 years old. She's not doing as well as Steve's is, but she can walk & she does love to play. Her smile can light up a room. I believe that the reason she hasn't developed as far as did, is because of her seizures. They have never been completely controlled, no matter how hard her doctors ( & us ) have tried. Hang in there, you will get through this. Love to you all... & Crystal Aquielle - almost 9 years old - BPP grade 3 - intractable seizures - g-tube - and VNS - and a smile that lights up our world. My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months old. > I found this group shortly after his diagnosis and have found it comforting to know there > are others out there dealing with this diagnosis on a daily basis and thriving which gives > me hope and also knowing there are others out there struggling with this diagnosis as it > allows me to know I am not alone. I want to thank all of you for sharing your stories and > your information, as we have gotten little info on PMG from any of our doctors. You are > truly amazing people. > > Here is our story. was born at 38 weeks after a normal, uneventful pregnancy. He > is a wonderful little guy who is very tolerant of most things and his smiles are contagious. > I suspected something was wrong with his development at around 6 months. Although his > ped. thought he was just a lazy baby, she made referrals based on my concerns. We had a > head xray done that came back normally and then an MRI which gave us our dreaded label > of PMG. I have searched for info on PMG and found very little. I have been in contact with > the Walsh lab in Boston and am waiting to hear back from them. Has anyone been to the > brain malformation clinic in Boston? We are currently petitioning our insurance to pay for > a visit there. My main hope has been to find where in the spectrum of PMG that 's > condition lays, so that I can be realistic about his development and progress. > > Throughout our barrage of appointments the only doctor we have seen thus far with any > experience with PMG has been the geneticist. We saw him right around 's first > birthday and they order many tests that all came back normal, so they have found no > underlying etiology for the PMG. Because he has seemed the only one with info on PMG, I > was anxious for the 15 month follow up visit that we had yesterday. At that appointment, > the Dr. told me pretty matter-of-factly that would not be high functioning and > that he probably wouldn't progress much more than he has. I was devastated. We have > received nothing but good reports from our therapists and EI teacher (who wrote in large > letters across her most recent report " A lot of Progress!! " ). currently does not > consistently roll over or roll over on his own. His head control and reaching abilities have > improved greatly over the last few months. has never had feeding troubles. He > eats stage 2 and 3 baby foods and many mashed table foods. He does not feed himself > with his fingers, but has occasionally wrestled his spoon away from whomever is feeding > him and has put it into his mouth to try to get off whatever is stuck to it. He sits in a > tripod and tries to lift his arms to reach while sitting. He doesn't talk or say consonants, > but he does try to " aaaah " back and forth with myself or my husband when we talk with > him. loves to watch other kids and is very interested in what others are doing. He > can pass objects back and forth between hands, can bang two objects and shakes his > maracas. He can pick objects out of a bowl or container. > > My question for you the experts is, what are real expectations for a 15 month old with > PMG and his current accomplishments? I refuse to believe I am wasting my time with the > therapy appts. and all the work we do with him at home. I understand that he probably > won't go to college or play sports, but there has to be something in between. My > husband believes that this Dr. made his prediction based only on seeing for 10 > minutes, not by working with for 10 minutes. I too put more weight in what his > therapists say because they work with him more often and have developed a relationship > with him. However, I feel I need some realistic advice based on his diagnosis as well and > they do not look at diagnosis when working with the kids. I'll admit that is probably a > good thing, but still would like to hear some input from the experts in this area - you the > parents that work with these special kids everyday. > > I am sorry that this message was so long, but appreciate you taking the time to read about > our story and I welcome any advice you may have for us at this time. > Thank you and God bless all of the children and families dealing with PMG and other > disabilities. > Annette > > > > > > > --------------------------------- > Have a burning question? Go to Yahoo! Answers and get answers from real people who know. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 27, 2007 Annette, My little guy, Quinn, turned one the beginning of this month. He doesn't sit by himself yet. He rolls over sometimes, but seems hampered by seizure activity. Though the meds work quite well, a virus sort of knocks him back. He'll lose tone, focus, and have trouble with sound. He is still nursing (quite well), eats baby cereal, will start fruits and veggies soon, but has trouble with gagging if he feels something unexpected in his mouth--the first bite is always no fun. His vision is about 20/80 - 20/128, depending on illness. He too, has made leaps of progress past what our neuro initially predicted, and the fact that he continues to do so is huge (as I'm sure you know). One of the things I've appreciated most about my son's therapists is that they've unequivocally stated that no two kids are alike and that a " diagnosis " (which is really just a description of findings on film) is only so useful. When I was just thunderstruck by the prediction of severe MR from the neuro (this despite Quinn's cheerful interaction), the PT said, " You know, we love neurologists, but they don't know everything. Only Quinn will be able to tell us what he can do. " At the last neuro visit, the doc revised himself a little-- commenting on how clearly happy Quinn is to be here. That's also a big deal. He stated then that around three years of age one can know more about what a reasonable expectation of progress in development might be, but that it's a very individual thing. The fact that you pushed for specialists in spite of the pediatrician's blowing you off indicates that you are just the mama your little guy needs. Find a doc who will back you and your good instincts--starting with admitting that he/she will likely never see another kid with the particular brain anomaly your son has. The therapy is helping, you know it is. The work is so, so hard, but worth it. The geneticist should be able to put you in touch with Dr. Dobyns. Our geneticist knows him and got Quinn enrolled in the study--so much of this stuff that there is to know about PMG comes in fits and starts. Sometimes it seems like little bits of useful info sort of accidentally escape from the professionals while we're in the office and it's up to me to then track the terms/statements down and interpret them. I think often they're so blown away themselves by these findings (even with so many years of training) that they forget that the parents (often lay people) are smart and curious and even more, *need* as much information as possible to advocate effectively for our kids. Knowledge is power. I think it's possible too that certain professionals think that giving a parent such serious news requires that they go a little overboard and kind of blow our minds. I think that because I didn't say something like " Oh no! " that the neuro thought I wasn't getting what he was saying. So he went over it again, telling me that Quinn will likely never be able to live on his own, yadda yadda. I get it, really I do. Sure it takes some time to sink in, but how about some real and helpful info? I mean, surely there's stuff to do? I think they don't have much to offer, so they can't. I think about the future generations that will benefit from Dr. Dobyns' work and our participation in it. Eh, that got long, sorry. Here's hoping for continued progress for . Blessings to you, http://duramater5.blogspot.com/ > > My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 months old. > I found this group shortly after his diagnosis and have found it comforting to know there > are others out there dealing with this diagnosis on a daily basis and thriving which gives > me hope and also knowing there are others out there struggling with this diagnosis as it > allows me to know I am not alone. I want to thank all of you for sharing your stories and > your information, as we have gotten little info on PMG from any of our doctors. You are > truly amazing people. > > Here is our story. was born at 38 weeks after a normal, uneventful pregnancy. He > is a wonderful little guy who is very tolerant of most things and his smiles are contagious. > I suspected something was wrong with his development at around 6 months. Although his > ped. thought he was just a lazy baby, she made referrals based on my concerns. We had a > head xray done that came back normally and then an MRI which gave us our dreaded label > of PMG. I have searched for info on PMG and found very little. I have been in contact with > the Walsh lab in Boston and am waiting to hear back from them. Has anyone been to the > brain malformation clinic in Boston? We are currently petitioning our insurance to pay for > a visit there. My main hope has been to find where in the spectrum of PMG that 's > condition lays, so that I can be realistic about his development and progress. > > Throughout our barrage of appointments the only doctor we have seen thus far with any > experience with PMG has been the geneticist. We saw him right around 's first > birthday and they order many tests that all came back normal, so they have found no > underlying etiology for the PMG. Because he has seemed the only one with info on PMG, I > was anxious for the 15 month follow up visit that we had yesterday. At that appointment, > the Dr. told me pretty matter-of-factly that would not be high functioning and > that he probably wouldn't progress much more than he has. I was devastated. We have > received nothing but good reports from our therapists and EI teacher (who wrote in large > letters across her most recent report " A lot of Progress!! " ). currently does not > consistently roll over or roll over on his own. His head control and reaching abilities have > improved greatly over the last few months. has never had feeding troubles. He > eats stage 2 and 3 baby foods and many mashed table foods. He does not feed himself > with his fingers, but has occasionally wrestled his spoon away from whomever is feeding > him and has put it into his mouth to try to get off whatever is stuck to it. He sits in a > tripod and tries to lift his arms to reach while sitting. He doesn't talk or say consonants, > but he does try to " aaaah " back and forth with myself or my husband when we talk with > him. loves to watch other kids and is very interested in what others are doing. He > can pass objects back and forth between hands, can bang two objects and shakes his > maracas. He can pick objects out of a bowl or container. > > My question for you the experts is, what are real expectations for a 15 month old with > PMG and his current accomplishments? I refuse to believe I am wasting my time with the > therapy appts. and all the work we do with him at home. I understand that he probably > won't go to college or play sports, but there has to be something in between. My > husband believes that this Dr. made his prediction based only on seeing for 10 > minutes, not by working with for 10 minutes. I too put more weight in what his > therapists say because they work with him more often and have developed a relationship > with him. However, I feel I need some realistic advice based on his diagnosis as well and > they do not look at diagnosis when working with the kids. I'll admit that is probably a > good thing, but still would like to hear some input from the experts in this area - you the > parents that work with these special kids everyday. > > I am sorry that this message was so long, but appreciate you taking the time to read about > our story and I welcome any advice you may have for us at this time. > Thank you and God bless all of the children and families dealing with PMG and other > disabilities. > Annette > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 28, 2007 Annette, All that any of us can do is try and give our little ones the best quality of like possible. To me that means getting all the therapies and attention possible. I will not have a doctor or therapist that does not believe in Kennedy, if they have a bad additude they get kicked to the curb. NO ONE is going to tell me what my little girl will or will not do. She use to see a so called " developement specialist " but he was an idiot and never had anything good to say so I got rid of him quick. and Kennedy(7yrs.,pmg) http://www.geocities.com/kenjenjennings/ > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Hello >Date: Sat, 27 Jan 2007 13:35:23 -0000 > >My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 >months old. >I found this group shortly after his diagnosis and have found it comforting >to know there >are others out there dealing with this diagnosis on a daily basis and >thriving which gives >me hope and also knowing there are others out there struggling with this >diagnosis as it >allows me to know I am not alone. I want to thank all of you for sharing >your stories and >your information, as we have gotten little info on PMG from any of our >doctors. You are >truly amazing people. > >Here is our story. was born at 38 weeks after a normal, uneventful >pregnancy. He >is a wonderful little guy who is very tolerant of most things and his >smiles are contagious. >I suspected something was wrong with his development at around 6 months. >Although his >ped. thought he was just a lazy baby, she made referrals based on my >concerns. We had a >head xray done that came back normally and then an MRI which gave us our >dreaded label >of PMG. I have searched for info on PMG and found very little. I have >been in contact with >the Walsh lab in Boston and am waiting to hear back from them. Has anyone >been to the >brain malformation clinic in Boston? We are currently petitioning our >insurance to pay for >a visit there. My main hope has been to find where in the spectrum of PMG >that 's >condition lays, so that I can be realistic about his development and >progress. > >Throughout our barrage of appointments the only doctor we have seen thus >far with any >experience with PMG has been the geneticist. We saw him right around >'s first >birthday and they order many tests that all came back normal, so they have >found no >underlying etiology for the PMG. Because he has seemed the only one with >info on PMG, I >was anxious for the 15 month follow up visit that we had yesterday. At >that appointment, >the Dr. told me pretty matter-of-factly that would not be high >functioning and >that he probably wouldn't progress much more than he has. I was >devastated. We have >received nothing but good reports from our therapists and EI teacher (who >wrote in large >letters across her most recent report " A lot of Progress!! " ). >currently does not >consistently roll over or roll over on his own. His head control and >reaching abilities have >improved greatly over the last few months. has never had feeding >troubles. He >eats stage 2 and 3 baby foods and many mashed table foods. He does not >feed himself >with his fingers, but has occasionally wrestled his spoon away from >whomever is feeding >him and has put it into his mouth to try to get off whatever is stuck to >it. He sits in a >tripod and tries to lift his arms to reach while sitting. He doesn't talk >or say consonants, >but he does try to " aaaah " back and forth with myself or my husband when we >talk with >him. loves to watch other kids and is very interested in what >others are doing. He >can pass objects back and forth between hands, can bang two objects and >shakes his >maracas. He can pick objects out of a bowl or container. > >My question for you the experts is, what are real expectations for a 15 >month old with >PMG and his current accomplishments? I refuse to believe I am wasting my >time with the >therapy appts. and all the work we do with him at home. I understand that >he probably >won't go to college or play sports, but there has to be something in >between. My >husband believes that this Dr. made his prediction based only on seeing > for 10 >minutes, not by working with for 10 minutes. I too put more weight >in what his >therapists say because they work with him more often and have developed a >relationship >with him. However, I feel I need some realistic advice based on his >diagnosis as well and >they do not look at diagnosis when working with the kids. I'll admit that >is probably a >good thing, but still would like to hear some input from the experts in >this area - you the >parents that work with these special kids everyday. > >I am sorry that this message was so long, but appreciate you taking the >time to read about >our story and I welcome any advice you may have for us at this time. >Thank you and God bless all of the children and families dealing with PMG >and other >disabilities. > > _________________________________________________________________ Laugh, share and connect with Windows Live Messenger http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?href=http://imagine\ -msn.com/messenger/launch80/default.aspx?locale=en-us & source=hmtagline Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 28, 2007 We saw a developmental specialist from NY years ago too...and that was also a ridiculous waste of our time. is like a canvas...and we dont know what colors are going to be painted there.... but we believe in him. He may not be able to speak...but you have to look past that, because there is a hidden message there...he has a way to communicate...I truly believe they all do...you just have to NOT label them the way the rest of the world does with " normal " children. Acceptance of their abilities..focus on their QUALITY of life...and they are the ones who will help you do that. NOT some half wit doctor who doesnt live with your child day in and day out. Have faith...believe in .. he will surprise you...and amaze you... I found that when I was disappointed at what " wasnt " it blocked me mentally from progressing and working on the good stuff that was smack in front of our eyes. SUCH as his eye gaze, his response to certain things, his preference for certain textures, his ability to understand sign, etc etc. Good luck... it certainly isnt going to be easy... you may face medical challenges that are scary...but you get through it...and each step in the journey is a learning experience. Get to Dr. Dobyns. Get doctors who look at your child with eyes open... and be an advocate for everything...everything.. that he needs. No one does it for you. You have to do it all...they will ask you about the details of the child... I have a computer journal with every detail spelled out...because I never wanted to have to try to remember anything. Sorry... just some advice from a 9 year PMG veteran. God Bless... ...Mom of ... age 9 Jennings wrote: Annette, All that any of us can do is try and give our little ones the best quality of like possible. To me that means getting all the therapies and attention possible. I will not have a doctor or therapist that does not believe in Kennedy, if they have a bad additude they get kicked to the curb. NO ONE is going to tell me what my little girl will or will not do. She use to see a so called " developement specialist " but he was an idiot and never had anything good to say so I got rid of him quick. and Kennedy(7yrs.,pmg) http://www.geocities.com/kenjenjennings/ > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Hello >Date: Sat, 27 Jan 2007 13:35:23 -0000 > >My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 >months old. >I found this group shortly after his diagnosis and have found it comforting >to know there >are others out there dealing with this diagnosis on a daily basis and >thriving which gives >me hope and also knowing there are others out there struggling with this >diagnosis as it >allows me to know I am not alone. I want to thank all of you for sharing >your stories and >your information, as we have gotten little info on PMG from any of our >doctors. You are >truly amazing people. > >Here is our story. was born at 38 weeks after a normal, uneventful >pregnancy. He >is a wonderful little guy who is very tolerant of most things and his >smiles are contagious. >I suspected something was wrong with his development at around 6 months. >Although his >ped. thought he was just a lazy baby, she made referrals based on my >concerns. We had a >head xray done that came back normally and then an MRI which gave us our >dreaded label >of PMG. I have searched for info on PMG and found very little. I have >been in contact with >the Walsh lab in Boston and am waiting to hear back from them. Has anyone >been to the >brain malformation clinic in Boston? We are currently petitioning our >insurance to pay for >a visit there. My main hope has been to find where in the spectrum of PMG >that 's >condition lays, so that I can be realistic about his development and >progress. > >Throughout our barrage of appointments the only doctor we have seen thus >far with any >experience with PMG has been the geneticist. We saw him right around >'s first >birthday and they order many tests that all came back normal, so they have >found no >underlying etiology for the PMG. Because he has seemed the only one with >info on PMG, I >was anxious for the 15 month follow up visit that we had yesterday. At >that appointment, >the Dr. told me pretty matter-of-factly that would not be high >functioning and >that he probably wouldn't progress much more than he has. I was >devastated. We have >received nothing but good reports from our therapists and EI teacher (who >wrote in large >letters across her most recent report " A lot of Progress!! " ). >currently does not >consistently roll over or roll over on his own. His head control and >reaching abilities have >improved greatly over the last few months. has never had feeding >troubles. He >eats stage 2 and 3 baby foods and many mashed table foods. He does not >feed himself >with his fingers, but has occasionally wrestled his spoon away from >whomever is feeding >him and has put it into his mouth to try to get off whatever is stuck to >it. He sits in a >tripod and tries to lift his arms to reach while sitting. He doesn't talk >or say consonants, >but he does try to " aaaah " back and forth with myself or my husband when we >talk with >him. loves to watch other kids and is very interested in what >others are doing. He >can pass objects back and forth between hands, can bang two objects and >shakes his >maracas. He can pick objects out of a bowl or container. > >My question for you the experts is, what are real expectations for a 15 >month old with >PMG and his current accomplishments? I refuse to believe I am wasting my >time with the >therapy appts. and all the work we do with him at home. I understand that >he probably >won't go to college or play sports, but there has to be something in >between. My >husband believes that this Dr. made his prediction based only on seeing > for 10 >minutes, not by working with for 10 minutes. I too put more weight >in what his >therapists say because they work with him more often and have developed a >relationship >with him. However, I feel I need some realistic advice based on his >diagnosis as well and >they do not look at diagnosis when working with the kids. I'll admit that >is probably a >good thing, but still would like to hear some input from the experts in >this area - you the >parents that work with these special kids everyday. > >I am sorry that this message was so long, but appreciate you taking the >time to read about >our story and I welcome any advice you may have for us at this time. >Thank you and God bless all of the children and families dealing with PMG >and other >disabilities. > > __________________________________________________________ Laugh, share and connect with Windows Live Messenger http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?href=http://imagine\ -msn.com/messenger/launch80/default.aspx?locale=en-us & source=hmtagline Ann Hasselberger District Leader Primerica Financial Services 1 (203)788-9602 jhasselberger@... www.primerica.com www.citigroup.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 29, 2007 Steve, don't I know it. We have done everything humanly possible to try to control her seizures. We were lucky enough to be able to get an epileptologist to take her case. He suggested the VNS device. She has had it for about 4 years now. The battery failed about 6 mos. ago. As soon as the doctor realized that it wasn't working right, she had a new one installed within a few days. Unfortunately, by then the damage was done. It takes awhile for them to get the settings back to where they were. Her seizures changed, & now she gets tonic clonics when that was the one seizure type that she didn't have before. < sigh > All we can do is keep on keeping on. Crystal was also doing fairly well during the 2 year period that she didn't have seizures. She was progressing, and we had hope for her. Now, it takes all of our energy just to care for her & try to keep her happy. With love to you, , & all the little ones... & Crystal Aquielle My son was diagnosised > in early Oct. 2006 with PMG. He is almost 15 months old. > > I found this group shortly after his diagnosis and have found it > comforting to know there > > are others out there dealing with this diagnosis on a daily basis > and thriving which gives > > me hope and also knowing there are others out there struggling > with this diagnosis as it > > allows me to know I am not alone. I want to thank all of you for > sharing your stories and > > your information, as we have gotten little info on PMG from any of > our doctors. You are > > truly amazing people. > > > > Here is our story. was born at 38 weeks after a normal, > uneventful pregnancy. He > > is a wonderful little guy who is very tolerant of most things and > his smiles are contagious. > > I suspected something was wrong with his development at around 6 > months. Although his > > ped. thought he was just a lazy baby, she made referrals based on > my concerns. We had a > > head xray done that came back normally and then an MRI which gave > us our dreaded label > > of PMG. I have searched for info on PMG and found very little. I > have been in contact with > > the Walsh lab in Boston and am waiting to hear back from them. > Has anyone been to the > > brain malformation clinic in Boston? We are currently petitioning > our insurance to pay for > > a visit there. My main hope has been to find where in the > spectrum of PMG that 's > > condition lays, so that I can be realistic about his development > and progress. > > > > Throughout our barrage of appointments the only doctor we have > seen thus far with any > > experience with PMG has been the geneticist. We saw him right > around 's first > > birthday and they order many tests that all came back normal, so > they have found no > > underlying etiology for the PMG. Because he has seemed the only > one with info on PMG, I > > was anxious for the 15 month follow up visit that we had > yesterday. At that appointment, > > the Dr. told me pretty matter-of-factly that would not be > high functioning and > > that he probably wouldn't progress much more than he has. I was > devastated. We have > > received nothing but good reports from our therapists and EI > teacher (who wrote in large > > letters across her most recent report " A lot of Progress!! " ). > currently does not > > consistently roll over or roll over on his own. His head control > and reaching abilities have > > improved greatly over the last few months. has never had > feeding troubles. He > > eats stage 2 and 3 baby foods and many mashed table foods. He > does not feed himself > > with his fingers, but has occasionally wrestled his spoon away > from whomever is feeding > > him and has put it into his mouth to try to get off whatever is > stuck to it. He sits in a > > tripod and tries to lift his arms to reach while sitting. He > doesn't talk or say consonants, > > but he does try to " aaaah " back and forth with myself or my > husband when we talk with > > him. loves to watch other kids and is very interested in > what others are doing. He > > can pass objects back and forth between hands, can bang two > objects and shakes his > > maracas. He can pick objects out of a bowl or container. > > > > My question for you the experts is, what are real expectations for > a 15 month old with > > PMG and his current accomplishments? I refuse to believe I am > wasting my time with the > > therapy appts. and all the work we do with him at home. I > understand that he probably > > won't go to college or play sports, but there has to be something > in between. My > > husband believes that this Dr. made his prediction based only on > seeing for 10 > > minutes, not by working with for 10 minutes. I too put > more weight in what his > > therapists say because they work with him more often and have > developed a relationship > > with him. However, I feel I need some realistic advice based on > his diagnosis as well and > > they do not look at diagnosis when working with the kids. I'll > admit that is probably a > > good thing, but still would like to hear some input from the > experts in this area - you the > > parents that work with these special kids everyday. > > > > I am sorry that this message was so long, but appreciate you > taking the time to read about > > our story and I welcome any advice you may have for us at this > time. > > Thank you and God bless all of the children and families dealing > with PMG and other > > disabilities. > > Annette > > > > > > > > > > > > > > --------------------------------- > > Have a burning question? Go to Yahoo! Answers and get answers from > real people who know. > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 29, 2007 , I just looked at the photo of Kennedy & her sister. The girls have gotten so big. They're both beautiul little girls ! With love to you all... & Crystal Aquielle... > > Annette, > > All that any of us can do is try and give our little ones the best quality > of like possible. To me that means getting all the therapies and attention > possible. I will not have a doctor or therapist that does not believe in > Kennedy, if they have a bad additude they get kicked to the curb. NO ONE is > going to tell me what my little girl will or will not do. She use to see a > so called " developement specialist " but he was an idiot and never had > anything good to say so I got rid of him quick. > > > > and Kennedy(7yrs.,pmg) > http://www.geocities.com/kenjenjennings/ > > > > > > > > >Reply-To: polymicrogyria > >To: polymicrogyria > >Subject: Hello > >Date: Sat, 27 Jan 2007 13:35:23 -0000 > > > >My son was diagnosised in early Oct. 2006 with PMG. He is almost 15 > >months old. > >I found this group shortly after his diagnosis and have found it comforting > >to know there > >are others out there dealing with this diagnosis on a daily basis and > >thriving which gives > >me hope and also knowing there are others out there struggling with this > >diagnosis as it > >allows me to know I am not alone. I want to thank all of you for sharing > >your stories and > >your information, as we have gotten little info on PMG from any of our > >doctors. You are > >truly amazing people. > > > >Here is our story. was born at 38 weeks after a normal, uneventful > >pregnancy. He > >is a wonderful little guy who is very tolerant of most things and his > >smiles are contagious. > >I suspected something was wrong with his development at around 6 months. > >Although his > >ped. thought he was just a lazy baby, she made referrals based on my > >concerns. We had a > >head xray done that came back normally and then an MRI which gave us our > >dreaded label > >of PMG. I have searched for info on PMG and found very little. I have > >been in contact with > >the Walsh lab in Boston and am waiting to hear back from them. Has anyone > >been to the > >brain malformation clinic in Boston? We are currently petitioning our > >insurance to pay for > >a visit there. My main hope has been to find where in the spectrum of PMG > >that 's > >condition lays, so that I can be realistic about his development and > >progress. > > > >Throughout our barrage of appointments the only doctor we have seen thus > >far with any > >experience with PMG has been the geneticist. We saw him right around > >'s first > >birthday and they order many tests that all came back normal, so they have > >found no > >underlying etiology for the PMG. Because he has seemed the only one with > >info on PMG, I > >was anxious for the 15 month follow up visit that we had yesterday. At > >that appointment, > >the Dr. told me pretty matter-of-factly that would not be high > >functioning and > >that he probably wouldn't progress much more than he has. I was > >devastated. We have > >received nothing but good reports from our therapists and EI teacher (who > >wrote in large > >letters across her most recent report " A lot of Progress!! " ). > >currently does not > >consistently roll over or roll over on his own. His head control and > >reaching abilities have > >improved greatly over the last few months. has never had feeding > >troubles. He > >eats stage 2 and 3 baby foods and many mashed table foods. He does not > >feed himself > >with his fingers, but has occasionally wrestled his spoon away from > >whomever is feeding > >him and has put it into his mouth to try to get off whatever is stuck to > >it. He sits in a > >tripod and tries to lift his arms to reach while sitting. He doesn't talk > >or say consonants, > >but he does try to " aaaah " back and forth with myself or my husband when we > >talk with > >him. loves to watch other kids and is very interested in what > >others are doing. He > >can pass objects back and forth between hands, can bang two objects and > >shakes his > >maracas. He can pick objects out of a bowl or container. > > > >My question for you the experts is, what are real expectations for a 15 > >month old with > >PMG and his current accomplishments? I refuse to believe I am wasting my > >time with the > >therapy appts. and all the work we do with him at home. I understand that > >he probably > >won't go to college or play sports, but there has to be something in > >between. My > >husband believes that this Dr. made his prediction based only on seeing > > for 10 > >minutes, not by working with for 10 minutes. I too put more weight > >in what his > >therapists say because they work with him more often and have developed a > >relationship > >with him. However, I feel I need some realistic advice based on his > >diagnosis as well and > >they do not look at diagnosis when working with the kids. I'll admit that > >is probably a > >good thing, but still would like to hear some input from the experts in > >this area - you the > >parents that work with these special kids everyday. > > > >I am sorry that this message was so long, but appreciate you taking the > >time to read about > >our story and I welcome any advice you may have for us at this time. > >Thank you and God bless all of the children and families dealing with PMG > >and other > >disabilities. > > > > > > _________________________________________________________________ > Laugh, share and connect with Windows Live Messenger > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/? href=http://imagine-msn.com/messenger/launch80/default.aspx?locale=en- us & source=hmtagline > Quote Share this post Link to post Share on other sites