Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 In a message dated 12/20/03 9:00:34 AM Eastern Standard Time, trishgustafson@... writes: But I was wondering if anyone out there has a child with similar issues? We are wondering about whether he will keep improving his tone so that he can walk some day. Any advice on tone improvement? We also wonder if he will keep meeting cognitive milestones or if he will have problems learning as his brain grows. A Hi Trish, Glad you found the group. I know these people have made a huge difference in my life.. It varies greatly from child to child. I'm sure someone on the list will have a child whose problems are similar to yours. Give that sweety a hug from me! Dad to Cody Colton age 8 PBNH & PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Hello Trish: I have a 19 month granddaughter with PMG in both hemispheres. She had her first MRI at Children's Memorial in Chicago,IL at 13 months old. The signs she had at birth were a small head and flat in the back. They don't think the flatness is due to the PMG but rather the excessive amount of amniotic fluid my daughter had. She did also have acid reflux but that has gotten better now and she is not on meds for it. She also had, and still does have (Laryngomalicia) which means a floppy esophagus. She is strider (a squeaky noise when breathing) but her lungs remain clear. She had an EEG at 15 months. No seizure activity. Knock on wood, she's never been sick with any viruses etc. She has eaten from a spoon for about 6 months now so we are extremely grateful for that. She is just now starting to eat very small pieces of chicken. She doesn't sleep well at night so therefore her parents and sibling were not getting sleep. The Chicago Rehab. Institute prescribed Valium and it seems to help. She is slow in teething. She now has only 4 teeth but when she gets them it seems to be all at once. I believe shortly that she will be cutting 4 more. I don't think we will, according to the ped neurologist ever know why this happened. I was, along with the rest of my family, so utterly saddened with the news of PMG. Our dreams kind of died for her at that time but since then we hope and pray that she'll be one of the lucky ones that will amaze the doctors. Not knowing how she'll progress is frightening but on the other hand it is encouraging. Each child seems to be so different. You'll always have that hope to get you through! You learn to rejoice at every little thing. For myself, I have learned true acceptance and love in the purest form. These things kind of give the word perfection a whole new meaning. These special little kids sometimes communicate in a way that others will never know. Lindsey does not yet talk, walk or say words but she is sitting and holding her head up much better and now can put her hands in her mouth. These are great strides thanks to all her therapists. She has come a very long way since 4 months old which is when she started her therapy. She is just started to bear weight and was fit for ankle braces which will help her stand. She is a delightful little girl with a giggle that melts your heart. What's not to love.... Stay positive. Grandmother to Lindsey 19 months new, with questions > Hello to everyone. I am so happy to have found this group while > searching the internet for information on pmg. We were recently told > that our son, Owen, has pmg. We are currently waiting for blood work > results to determine the cause. If this doesn't offer information, > Owen will have to undergo a muscle biopsy. We are not thrilled about > doing this and wonder if it is even necessary since we know about the > pmg. He has already had to go through so much. > > Owen is 4 1/2 months old and the love of my life. At our two month > check up, our pediatrician did not think he was holding his head up > enough. We already had to have splints made for his wrists which > were tight upon birth (they look great now.) We learned that he has > hypotonia. So after many tests, including an eeg and an mri, we > found out about the pmg. On Monday, we will have additional splints > made for his feet to get them to stretch and straighten a little > more. We are also doing a lot of physical therapy and massage to > help him with the low tone issue. > > He now olds his head up really well when we hold him in a sitting > position and is using his arms and legs a lot more. He even sucks on > his right thumb at times. But he does not hold his head up during > tummy time. We are working on this a lot though. > > His cognitive development is on track. He is a happy child who > constantly smiles and laughs. I think at this point he likes > listening to the sound of his own voice! > > We still have many questions and have contacted our neurologist (my > husband is fond of calling him the " nearly logical doctor " )to see > about sending Owen's information to Dr. Dobyns. > > But I was wondering if anyone out there has a child with similar > issues? We are wondering about whether he will keep improving his > tone so that he can walk some day. Any advice on tone improvement? > We also wonder if he will keep meeting cognitive milestones or if he > will have problems learning as his brain grows. Also, I read in an > old email about a conference on pmg. Is this yearly? We would love > to attend. > > Happy Holidays to all. > > Trish, mother of Owen (4 1/2 months with pmg) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 Hi there: Lindsey has only had the ankle braces for a few days now so I can't tell you much yet. Her feet turn outward and her ankles, (mostly her left) is not aligned with her leg bone. This is how the therapist explained it to my daughter. I'll let you know how they work after she has them a while. They are supposed to support her when she bears weight in her walker or when you hold her up. She doesn't do much with them yet but because she seems to buckle when we hold her up. The times are sporadic that she wants to bear weight. Allot of times she will bear weight when we don't have them on her or vice/versa. I don't know if this is making any sense but it's the best I can explain it. Remember, I'm just the grandma. I take care of Lindsey about two days a week while her mom and dad work. The therapists swear by them and say they will help her tremdously. We'll see. I will keep you posted. Bonnie, Noni to Lindsey (19 months old w/ PMG). I hope your Jenna is feeling better by now. new, with questions > > > > Hello to everyone. I am so happy to have found this group while > > searching the internet for information on pmg. We were recently told > > that our son, Owen, has pmg. We are currently waiting for blood work > > results to determine the cause. If this doesn't offer information, > > Owen will have to undergo a muscle biopsy. We are not thrilled about > > doing this and wonder if it is even necessary since we know about the > > pmg. He has already had to go through so much. > > > > Owen is 4 1/2 months old and the love of my life. At our two month > > check up, our pediatrician did not think he was holding his head up > > enough. We already had to have splints made for his wrists which > > were tight upon birth (they look great now.) We learned that he has > > hypotonia. So after many tests, including an eeg and an mri, we > > found out about the pmg. On Monday, we will have additional splints > > made for his feet to get them to stretch and straighten a little > > more. We are also doing a lot of physical therapy and massage to > > help him with the low tone issue. > > > > He now olds his head up really well when we hold him in a sitting > > position and is using his arms and legs a lot more. He even sucks on > > his right thumb at times. But he does not hold his head up during > > tummy time. We are working on this a lot though. > > > > His cognitive development is on track. He is a happy child who > > constantly smiles and laughs. I think at this point he likes > > listening to the sound of his own voice! > > > > We still have many questions and have contacted our neurologist (my > > husband is fond of calling him the " nearly logical doctor " )to see > > about sending Owen's information to Dr. Dobyns. > > > > But I was wondering if anyone out there has a child with similar > > issues? We are wondering about whether he will keep improving his > > tone so that he can walk some day. Any advice on tone improvement? > > We also wonder if he will keep meeting cognitive milestones or if he > > will have problems learning as his brain grows. Also, I read in an > > old email about a conference on pmg. Is this yearly? We would love > > to attend. > > > > Happy Holidays to all. > > > > Trish, mother of Owen (4 1/2 months with pmg) > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 Thanks Bonnie...I look forward to hearing how Lindsey does with them. Merry Christmas!! ~ & Alina, and Jenna (18 months with PMG) new, with questions > > > > Hello to everyone. I am so happy to have found this group while > > searching the internet for information on pmg. We were recently told > > that our son, Owen, has pmg. We are currently waiting for blood work > > results to determine the cause. If this doesn't offer information, > > Owen will have to undergo a muscle biopsy. We are not thrilled about > > doing this and wonder if it is even necessary since we know about the > > pmg. He has already had to go through so much. > > > > Owen is 4 1/2 months old and the love of my life. At our two month > > check up, our pediatrician did not think he was holding his head up > > enough. We already had to have splints made for his wrists which > > were tight upon birth (they look great now.) We learned that he has > > hypotonia. So after many tests, including an eeg and an mri, we > > found out about the pmg. On Monday, we will have additional splints > > made for his feet to get them to stretch and straighten a little > > more. We are also doing a lot of physical therapy and massage to > > help him with the low tone issue. > > > > He now olds his head up really well when we hold him in a sitting > > position and is using his arms and legs a lot more. He even sucks on > > his right thumb at times. But he does not hold his head up during > > tummy time. We are working on this a lot though. > > > > His cognitive development is on track. He is a happy child who > > constantly smiles and laughs. I think at this point he likes > > listening to the sound of his own voice! > > > > We still have many questions and have contacted our neurologist (my > > husband is fond of calling him the " nearly logical doctor " )to see > > about sending Owen's information to Dr. Dobyns. > > > > But I was wondering if anyone out there has a child with similar > > issues? We are wondering about whether he will keep improving his > > tone so that he can walk some day. Any advice on tone improvement? > > We also wonder if he will keep meeting cognitive milestones or if he > > will have problems learning as his brain grows. Also, I read in an > > old email about a conference on pmg. Is this yearly? We would love > > to attend. > > > > Happy Holidays to all. > > > > Trish, mother of Owen (4 1/2 months with pmg) > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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