Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 hi all: Saw Clayton's local neuro today and all and all it was a good appointment. His weight is good - but height is still less than 2%. It looks like we will be going for a full endocrine workup in the spring after his 3rd b-day. Also he scheduled Clayton for a MRI Spect as his lactic levels still are high - not excessively high but high enough and also because of a question of basal ganglion involvement (whatever that means). His MRI last April was slightly abnormal with white patches and questions about mylein(sp) issues. His MRI at 9 months was normal and abnormal at 2 years. So now he will have his first MRI spect on Feb 10th. I am vaguely familar with what an MRI Spect is so can someone tell me what it is and what it looks for and what it shows. Overall it was a good appointment. He reflexes are all still good. Also we wille eventually do a muti-day video MRi when I feel up to it - no hurry. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 In a message dated 1/18/00 8:00:52 PM Eastern Standard Time, kip3@... writes: << My daughter's lactic acid levels have been extremely high since birth, and we are going in for an MRS instead of an MRI is that the same as what you are going in for? Also, ours is with some kind of sedation, that I find out about tomorrow. The MRS is in Feb. >> Patti: Yes. CLayton is having an MRI with sedation also - IV sedation. Neuro has said that he is not to have chloral hydrate anymore following a bad reaction to it in November when he had a cardiac echo and EKG. He had a heart MRI in December with IV sedation that was approved by the neuro and he did fine. Ours is also scheduled in Feb on Feb 10th at CHOP in Philly. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 Hi Sharon, My daughter's lactic acid levels have been extremely high since birth, and we are going in for an MRS instead of an MRI is that the same as what you are going in for? Also, ours is with some kind of sedation, that I find out about tomorrow. The MRS is in Feb. Patti A few questions > From: SDidinsky@... > > hi all: > > Saw Clayton's local neuro today and all and all it was a good appointment. > His weight is good - but height is still less than 2%. It looks like we will > be going for a full endocrine workup in the spring after his 3rd b-day. Also > he scheduled Clayton for a MRI Spect as his lactic levels still are high - > not excessively high but high enough and also because of a question of basal > ganglion involvement (whatever that means). His MRI last April was slightly > abnormal with white patches and questions about mylein(sp) issues. His MRI > at 9 months was normal and abnormal at 2 years. So now he will have his first > MRI spect on Feb 10th. I am vaguely familar with what an MRI Spect is so can > someone tell me what it is and what it looks for and what it shows. > > Overall it was a good appointment. He reflexes are all still good. Also we > wille eventually do a muti-day video MRi when I feel up to it - no hurry. > > Love, > Sharon > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Pam, My son has always had his mouth in a relaxed open position. He also has his tongue protruding. So many of the doctors therapists and what not have different ideas as to why this is. Some say he has weak muscles or low tone in this area. He doesn't anywhere else on his body. It was though that he may have enlarged adenoids and that was why his tongue protruded. Turns out he did as well as enlarged tonsils. Both were removed, but he still does the same thing. Although not as severely as before. Others say that it is his large tongue causing the problem. There have been others that have said that it simply is a habit now that has to be broken. He has speech therapy and we do exercises. Sorry I can't answer your question as to why, but maybe when you see the ENT they can. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Hi Pam, My 16 month onld elizabeth is suspected of having a mito disorder. She has all the telltale signs, just not a diagnosis. But she almost always has her mouth open. I've also noticed that she will let her tongue just hang on her lower lip sometimes while her mouth is open. I don't know what this means. She has just started the tongue thing recently. Before I knew anything about Mito diseases I thought was autistic. I don't know if she is or not, she does show some of the signs. She likes to go into her own little world. she will pick up a piece of string of lint or whatever and just sitt here fiddling with it. sometimes she's looking at it and sometimes she will fiddle with it without looking at it. Also, she will watch TV. She loves TV. elizabeth is also very significantly Develeopmentally delayed. She doesn't understand speech but she can hear. I don't know if this helped or not. I just wanted to let you know that I could relate. Mother of 3 and 16 months (currently testing for mito) > is suspected of having a mito myopathy. > These upcoming weeks we are undergoing alot of tests. > had an appointment with an ENT for reocurring > ear infections and she has to go have tubes put in > on March 13. She will be having an EEG on March 8. > We are awaiting an appt. time for and EMG and CT, and > hopefully a muscle biopsy this summer. How long does > it take for the results to come back from a muscle > biospy? Well, now onto the question. I been noticing > lately that keeps her mouth open alot. Whether > she is smiling , playing or just sitting there, it always > seems to be open. I was just wondering if anyone else > has noticed this about their child. Another thing, why is > a child thought to be autisic? shows signs of some > of the things I have read about but it could be from something > else, like her vision or just being herself. If anyone could > share any information on anything in my post, I would > greatly apprecitate it. > Pam Quote Link to comment Share on other sites More sharing options...
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