Guest guest Posted June 29, 1999 Report Share Posted June 29, 1999 Amy.... I see a neurologist in Philly. She also specializes in ALS and does a lot of work with kids, I think, tho it is north of Philly. If you are interested, catch me privately and I will pass on the info....in any even good luck with ... Have you thought about the Vit A content in carrots???? Is there a chance that that is what is causing her " spit-up " problem? How does she do with orange (winter) squash??? Another thought, since there is a 6 hour time lapse, could it be bile instead?? Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 1999 Report Share Posted June 29, 1999 Amy.... I see a neurologist in Philly. She also specializes in ALS and does a lot of work with kids, I think, tho it is north of Philly. If you are interested, catch me privately and I will pass on the info....in any even good luck with ... Have you thought about the Vit A content in carrots???? Is there a chance that that is what is causing her " spit-up " problem? How does she do with orange (winter) squash??? Another thought, since there is a 6 hour time lapse, could it be bile instead?? Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 , My sons name is . I think you are referring to my description of his rigidity or movement disorder. He has complex I defect. I have not heard any responses that anyone else has experienced similiar symptoms of arm and leg stiffening with jaw dropping open during voluntary movement. Everything else about so far, is right on track for a 2 year old. Can you describe s movements? Martha Digest Number 148 > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Martha, will put his arms and legs out in front of him and stiffen up, sometimes pointing his toes, sometimes twirling his feet. He will also position his arms like he is doing bicep curls, with his hands in the up position, sometimes angles into or away from his body and shakes. He will shake his head like saying " no " but he isn't voluntarily saing no, he has no control over it, and shakes his head fast. Every once in awhile he will bang his head on things, but most of the time he will bang things on his head (blocks, bottle, toys) it is rythmic when he does it and can't stop unless something else distracts him. His jaw doesn't just drop open, although he does make an " O " shape and breathes hard. He is gtting better control of his movement through OT, but still stops and gets stiff in the middle of things. We are awating a 2nd opinion from the neuro, the frst one looked at his " normal " EEG and said " well IF he is having siezures, they aren't the kind that are doing damage to his brain " and dismissed it. I about did some damage to his brain, he only saw for 10minutes (J was asleep!) and didn't even look at his medcal record. I have found a couple of docs that really dismiss 's symptoms because of my age (23) and the fact that he is my first child. They think I am a paranoid first time mom, and about hit the floor when I speak intelligently or understand the words and concepts that they spent $100,000 and 10 years in med school learning. They don't realize that this is MY CHILD who I am with every day, and I DO know what I am talking about when I say there is something wrong. This list has been a wonderful " research tool " for me. Every time I hear one person describe one of s symptoms, I have that much more confidence in myself and the questions I am forever asking the docs. (I guess I had to vent!) I hope those were good enough descriptions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Matty has complex 1 and does not have this symptom. He does stare off sometimes for a few seconds and jerks in his sleep unlike normal jerking when someone does fall to sleep sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Matty has complex 1 and does not have this symptom. He does stare off sometimes for a few seconds and jerks in his sleep unlike normal jerking when someone does fall to sleep sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Matty has complex 1 and does not have this symptom. He does stare off sometimes for a few seconds and jerks in his sleep unlike normal jerking when someone does fall to sleep sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 I am sitting here laughing at the Dr.s and feeling so good about your attitude!! And the Dr. who looked at your sleeping Jarod for 10 minutes and made a judgement-I've had quacks like that walk into the room and take one look at Shenan and say, " she looks fine to me " and walk out, you want to grab them by the neck. Or the one who pushed her legs out when checking her reflexes and he couldn't get any to prove to me she did have them! I love it, you're great! S. Re: Digest Number 148 Martha, will put his arms and legs out in front of him and stiffen up, sometimes pointing his toes, sometimes twirling his feet. He will also position his arms like he is doing bicep curls, with his hands in the up position, sometimes angles into or away from his body and shakes. He will shake his head like saying " no " but he isn't voluntarily saing no, he has no control over it, and shakes his head fast. Every once in awhile he will bang his head on things, but most of the time he will bang things on his head (blocks, bottle, toys) it is rythmic when he does it and can't stop unless something else distracts him. His jaw doesn't just drop open, although he does make an " O " shape and breathes hard. He is gtting better control of his movement through OT, but still stops and gets stiff in the middle of things. We are awating a 2nd opinion from the neuro, the frst one looked at his " normal " EEG and said " well IF he is having siezures, they aren't the kind that are doing damage to his brain " and dismissed it. I about did some damage to his brain, he only saw for 10minutes (J was asleep!) and didn't even look at his medcal record. I have found a couple of docs that really dismiss 's symptoms because of my age (23) and the fact that he is my first child. They think I am a paranoid first time mom, and about hit the floor when I speak intelligently or understand the words and concepts that they spent $100,000 and 10 years in med school learning. They don't realize that this is MY CHILD who I am with every day, and I DO know what I am talking about when I say there is something wrong. This list has been a wonderful " research tool " for me. Every time I hear one person describe one of s symptoms, I have that much more confidence in myself and the questions I am forever asking the docs. (I guess I had to vent!) I hope those were good enough descriptions. Quote Link to comment Share on other sites More sharing options...
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