Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Thanks Dawn. I can relate to him being frustrated. Baby does the same thing. We have definately seen a difference in him too since he began therapy. Our OT doesn't start until next week. When you find out what parts of the brain, let us know. --- dawn.werner@... wrote: > Hi , > > We haven't been told yet which parts of the brain. > We go on the 15th > for a follow up.. Yes he's got PT and he starts OT > next week.. We can > see the differnce but it's frustrating watching him > struggle and get > mad.. The therapist keeps telling me its good he has > the drive > though. > > Dawn > > > > > > HELLO TO EVERYONE > > > > > > > > > > My name is Heidi. I have a beautiful 16 1/2 > > > month > > > > > old daughter, Hailey, who was diagnosed with > UPP > > > ( > > > > > Unilateral Perisylvian Polymicrogeria ) on > the > > > right > > > > > side of her brain about a week ago. She is > my > > > first > > > > > child, and now probably my last, but she > does > > > have > > > > > two half brothers, Dylan- who will turn 4 in > > > Dec., > > > > > and Dakota- who will turn 3 this Sat. We get > the > > > > > boys on weekends, so in some ways I do have > 3 > > > kids. > > > > > It is just so frustrating not knowing why > Hailey > > > has > > > > > this or if the next child would get it also- > so, > > > > > unfortunately, no more kids for me. > > > > > At Hailey's 9 month check-up, I told her > doctor > > > that > > > > > I felt she was not where she should have > been > > > > > developmentally. He noticed that she had low > > > tone in > > > > > her neck and trunk area. She also kept her > left > > > hand > > > > > fisted quite a bit. Hailey had just started > > > rolling > > > > > over, could not sit up, and had a hard time > > > keeping > > > > > her head up. Her doctor ordered an MRI which > > > > > revealed that the right side of her brain > was > > > only > > > > > about 1/3 the size it should have been. The > > > > > radiologist had also noted Lissencephaly on > that > > > > > side. We went to a neurologist who said that > it > > > was > > > > > not Lissencephaly, but she'd had a stroke in > > > utero > > > > > between 3-5 months. A second neurologist > said > > > the > > > > > same thing and ordered genetics testing. The > > > > > geneticists found nothing but showed the MRI > to > > > her > > > > > radiologist, who also said Lissencephaly. By > > > then > > > > > we'd had two radiologists say yes and two > > > > > neurologists say no. We sent the MRI to Dr. > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Dawn, did you ever find out which parts of your son's brain have the PMG? --- dawn.werner@... wrote: > Hi , > > We haven't been told yet which parts of the brain. > We go on the 15th > for a follow up.. Yes he's got PT and he starts OT > next week.. We can > see the differnce but it's frustrating watching him > struggle and get > mad.. The therapist keeps telling me its good he has > the drive > though. > > Dawn > > > > > > HELLO TO EVERYONE > > > > > > > > > > My name is Heidi. I have a beautiful 16 1/2 > > > month > > > > > old daughter, Hailey, who was diagnosed with > UPP > > > ( > > > > > Unilateral Perisylvian Polymicrogeria ) on > the > > > right > > > > > side of her brain about a week ago. She is > my > > > first > > > > > child, and now probably my last, but she > does > > > have > > > > > two half brothers, Dylan- who will turn 4 in > > > Dec., > > > > > and Dakota- who will turn 3 this Sat. We get > the > > > > > boys on weekends, so in some ways I do have > 3 > > > kids. > > > > > It is just so frustrating not knowing why > Hailey > > > has > > > > > this or if the next child would get it also- > so, > > > > > unfortunately, no more kids for me. > > > > > At Hailey's 9 month check-up, I told her > doctor > > > that > > > > > I felt she was not where she should have > been > > > > > developmentally. He noticed that she had low > > > tone in > > > > > her neck and trunk area. She also kept her > left > > > hand > > > > > fisted quite a bit. Hailey had just started > > > rolling > > > > > over, could not sit up, and had a hard time > > > keeping > > > > > her head up. Her doctor ordered an MRI which > > > > > revealed that the right side of her brain > was > > > only > > > > > about 1/3 the size it should have been. The > > > > > radiologist had also noted Lissencephaly on > that > > > > > side. We went to a neurologist who said that > it > > > was > > > > > not Lissencephaly, but she'd had a stroke in > > > utero > > > > > between 3-5 months. A second neurologist > said > > > the > > > > > same thing and ordered genetics testing. The > > > > > geneticists found nothing but showed the MRI > to > > > her > > > > > radiologist, who also said Lissencephaly. By > > > then > > > > > we'd had two radiologists say yes and two > > > > > neurologists say no. We sent the MRI to Dr. > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Dawn, did you ever find out which parts of your son's brain have the PMG? --- dawn.werner@... wrote: > Hi , > > We haven't been told yet which parts of the brain. > We go on the 15th > for a follow up.. Yes he's got PT and he starts OT > next week.. We can > see the differnce but it's frustrating watching him > struggle and get > mad.. The therapist keeps telling me its good he has > the drive > though. > > Dawn > > > > > > HELLO TO EVERYONE > > > > > > > > > > My name is Heidi. I have a beautiful 16 1/2 > > > month > > > > > old daughter, Hailey, who was diagnosed with > UPP > > > ( > > > > > Unilateral Perisylvian Polymicrogeria ) on > the > > > right > > > > > side of her brain about a week ago. She is > my > > > first > > > > > child, and now probably my last, but she > does > > > have > > > > > two half brothers, Dylan- who will turn 4 in > > > Dec., > > > > > and Dakota- who will turn 3 this Sat. We get > the > > > > > boys on weekends, so in some ways I do have > 3 > > > kids. > > > > > It is just so frustrating not knowing why > Hailey > > > has > > > > > this or if the next child would get it also- > so, > > > > > unfortunately, no more kids for me. > > > > > At Hailey's 9 month check-up, I told her > doctor > > > that > > > > > I felt she was not where she should have > been > > > > > developmentally. He noticed that she had low > > > tone in > > > > > her neck and trunk area. She also kept her > left > > > hand > > > > > fisted quite a bit. Hailey had just started > > > rolling > > > > > over, could not sit up, and had a hard time > > > keeping > > > > > her head up. Her doctor ordered an MRI which > > > > > revealed that the right side of her brain > was > > > only > > > > > about 1/3 the size it should have been. The > > > > > radiologist had also noted Lissencephaly on > that > > > > > side. We went to a neurologist who said that > it > > > was > > > > > not Lissencephaly, but she'd had a stroke in > > > utero > > > > > between 3-5 months. A second neurologist > said > > > the > > > > > same thing and ordered genetics testing. The > > > > > geneticists found nothing but showed the MRI > to > > > her > > > > > radiologist, who also said Lissencephaly. By > > > then > > > > > we'd had two radiologists say yes and two > > > > > neurologists say no. We sent the MRI to Dr. > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Dawn, did you ever find out which parts of your son's brain have the PMG? --- dawn.werner@... wrote: > Hi , > > We haven't been told yet which parts of the brain. > We go on the 15th > for a follow up.. Yes he's got PT and he starts OT > next week.. We can > see the differnce but it's frustrating watching him > struggle and get > mad.. The therapist keeps telling me its good he has > the drive > though. > > Dawn > > > > > > HELLO TO EVERYONE > > > > > > > > > > My name is Heidi. I have a beautiful 16 1/2 > > > month > > > > > old daughter, Hailey, who was diagnosed with > UPP > > > ( > > > > > Unilateral Perisylvian Polymicrogeria ) on > the > > > right > > > > > side of her brain about a week ago. She is > my > > > first > > > > > child, and now probably my last, but she > does > > > have > > > > > two half brothers, Dylan- who will turn 4 in > > > Dec., > > > > > and Dakota- who will turn 3 this Sat. We get > the > > > > > boys on weekends, so in some ways I do have > 3 > > > kids. > > > > > It is just so frustrating not knowing why > Hailey > > > has > > > > > this or if the next child would get it also- > so, > > > > > unfortunately, no more kids for me. > > > > > At Hailey's 9 month check-up, I told her > doctor > > > that > > > > > I felt she was not where she should have > been > > > > > developmentally. He noticed that she had low > > > tone in > > > > > her neck and trunk area. She also kept her > left > > > hand > > > > > fisted quite a bit. Hailey had just started > > > rolling > > > > > over, could not sit up, and had a hard time > > > keeping > > > > > her head up. Her doctor ordered an MRI which > > > > > revealed that the right side of her brain > was > > > only > > > > > about 1/3 the size it should have been. The > > > > > radiologist had also noted Lissencephaly on > that > > > > > side. We went to a neurologist who said that > it > > > was > > > > > not Lissencephaly, but she'd had a stroke in > > > utero > > > > > between 3-5 months. A second neurologist > said > > > the > > > > > same thing and ordered genetics testing. The > > > > > geneticists found nothing but showed the MRI > to > > > her > > > > > radiologist, who also said Lissencephaly. By > > > then > > > > > we'd had two radiologists say yes and two > > > > > neurologists say no. We sent the MRI to Dr. > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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