Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 In a message dated 8/24/02 9:14:52 AM Central Daylight Time, matherstassie@... writes: > passed away on the 10th of December 2000 at 7 weeks of age, > after we made the heart-breaking decision to take her off life > support, I've noticed that your site is mainly people seeking advice > about their children, & the type of things to help them (diet etc.) I > just wonder if their are other parents who have lost children to this > terrible brain ??(I don't even know what to call it). > Any-way I'll leave it for now & wait to see if I hear back from any- > one. Regards Joanne (Tasmania, Australia) > <HUG> Joanne, my heart goes out to you lady....There are several parents on the list that still belong after loosing one of their angles. I'm sure you'll hear from them shortly. We are afraid that we'll loose Cody, (7 years old tomorrow) when he has a seizure. His respirations drop to 2-8 per minute when he has one. I know that if we ever loose Cody, I'll always remain a member of this group. I've come to know & love each & everyone one here. My heart & hopes rise & fall as does the health of our babies in the community. I just want everyone to know, I'm right there in the seat beside you on the roller coaster of emotions. Love to all, K. Father to: Cody Colton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 >I was just wondering if any one else had twins with only 1 baby >being diagnosed with Polymicrogyria. . .we were told was very rare > & especially in twins, Hi-- I have identical twin boys, one with a PMG diganosis and one typically developing. I think you were misinformed about it being rare in twins. If anything, twins have a higher incidence of neurological probelms. Some can arise from being a twin--as in our case. (Our boys had Twin to Twin transfusion syndrome, which can only occur in identical twins who share the same placenta.) But fraternal twins can have similar issues when there is a faulty cord insertion or IGUR, or accidents before and during a multiple birth. Beyond that, twins have just as much chance of inheriting any genetic disorder. So twins actually have a significantly higher chance of having disorders like PMG. I am so sorry you lost your little girl. I know how painful it has been for us to deal with a profoundly handicapped child at the same time as dealing with our healthy baby. I can only imagine how difficult it is to deal with the loss of a baby. I hope you find some answers and comfort here-- mom of boys Tim 8 5 and 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 We haven't lost our baby. He is 6 months. I am so sorry for your heartbreak. I will pray for you and your family. I am great-grandma to on. This is our first experence with any thing like this. The Drs. have been very devastateing but they don't know it all. Only God does. Maybe one day you will be able to help someone else because of what you have been through. God bless you Ruth --- sjmjm2001 wrote: > Hi, my name is Joanne, I actually joined this group > in May 2002 but > have only just now felt up to writing in, I was just > wondering if any > one else had twins with only 1 baby being diagnosed > with > Polymicrogyria, in October 2000 I gave birth to > & , > was & is a perfect, happy, healthy little > boy but sadly > was born very ill & finally diagnoses with > Bilateral > Frontoparietal Polymicrogyria, which at the time we > were told was > very rare & especially in twins, I'm starting to > wonder about alot of > things we were told. > passed away on the 10th of December 2000 at > 7 weeks of age, > after we made the heart-breaking decision to take > her off life > support, I've noticed that your site is mainly > people seeking advice > about their children, & the type of things to help > them (diet etc.) I > just wonder if their are other parents who have lost > children to this > terrible brain ??(I don't even know what to call > it). > Any-way I'll leave it for now & wait to see if I > hear back from any- > one. Regards Joanne (Tasmania, Australia) > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Hi Joanne, I lost my precious on February 07, 2002. She had Bilateral Persylvian(spelling?) Polymicrogyria. She was 1month 26days old. We too had to make the difficult decision not to place her on life support. She took her last breath and that was it. She had 3 respiratory arrests before that. So we knew she was not meant to be on this earth. No matter how many times she showed a little improvement she always had trouble with breathing and go down hill. Even her tongue would interfere. We still do not know the cause even though Dr. Dobyns feels it looks like a viral or blood supply problem in utero from all the calcifications on her brain as well as the PMG. Then he feels that because of her heart defects she could have had a syndrome. So in his words: " I do not know the cause of her birth defects. " So I truly believe there is alot to be learned from these children. So many have PMG and so many are so different. Some do well and some become angels. My heart goes out to you and feel free to speak with me anytime. Carolyn mom to angel and beautiful , Ciara 5yrs old. Twins Hi, my name is Joanne, I actually joined this group in May 2002 but have only just now felt up to writing in, I was just wondering if any one else had twins with only 1 baby being diagnosed with Polymicrogyria, in October 2000 I gave birth to & , was & is a perfect, happy, healthy little boy but sadly was born very ill & finally diagnoses with Bilateral Frontoparietal Polymicrogyria, which at the time we were told was very rare & especially in twins, I'm starting to wonder about alot of things we were told. passed away on the 10th of December 2000 at 7 weeks of age, after we made the heart-breaking decision to take her off life support, I've noticed that your site is mainly people seeking advice about their children, & the type of things to help them (diet etc.) I just wonder if their are other parents who have lost children to this terrible brain ??(I don't even know what to call it). Any-way I'll leave it for now & wait to see if I hear back from any- one. Regards Joanne (Tasmania, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Sorry to hear of your loss. I have fraternal(maternal) twins. My son was diagnosed with PMG three years ago. He started experiencing seizures at age eight. He is nonverbal for the most part, he is mobile, and attends a class for children with " multihandicaps " . His sister is " normal " . The twins are eleven now. As the neuro said things like this happen. Yes the condition is rare. I'll pray for you. Grief takes time. Take care and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Hello Joanne, I know there are a couple of families on our loop that have twins. Mine are (or should I say were?) identical twins but because of imbilical problems Teddy didn't get the nutrients to help his body finish off the regular way. PMG is a malformation of the brain..his brain didn't form right because of lack of necessary supplies at the time of it's ...perhaps division or separation of the brain to it's proper levels and places. His twin, Hunter, is completely normal and shows no effects. I am sorry for your loss and I know it must have been a tramatic decision to make at the time. Our children might have the same diagnosis but their levels of difficulties are dramatically different. There is another email group for bereaved parents...if you'd like I'll find out the name? But you are of course welcome in our group. Hugs to all, --- sjmjm2001 wrote: > Hi, my name is Joanne, I actually joined this group in > May 2002 but > have only just now felt up to writing in, I was just > wondering if any > one else had twins with only 1 baby being diagnosed with > Polymicrogyria, in October 2000 I gave birth to & > , > was & is a perfect, happy, healthy little boy but > sadly > was born very ill & finally diagnoses with > Bilateral > Frontoparietal Polymicrogyria, which at the time we were > told was > very rare & especially in twins, I'm starting to wonder > about alot of > things we were told. > passed away on the 10th of December 2000 at 7 > weeks of age, > after we made the heart-breaking decision to take her off > life > support, I've noticed that your site is mainly people > seeking advice > about their children, & the type of things to help them > (diet etc.) I > just wonder if their are other parents who have lost > children to this > terrible brain ??(I don't even know what to call it). > Any-way I'll leave it for now & wait to see if I hear > back from any- > one. Regards Joanne (Tasmania, Australia) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Joanne, I have twins, age 4, one with pmg and one typically developing. I don't know if they are identical or not, but they look a lot alike. When they were born, had trouble breathing, but her difficulties were not as serious as 's. I can't imagine how it feels to lose one of your children. May God bless you and give you peace in your loss. Lana, mom to --CBPS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Joanne, I have twins, age 4, one with pmg and one typically developing. I don't know if they are identical or not, but they look a lot alike. When they were born, had trouble breathing, but her difficulties were not as serious as 's. I can't imagine how it feels to lose one of your children. May God bless you and give you peace in your loss. Lana, mom to --CBPS Quote Link to comment Share on other sites More sharing options...
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