Back to CHOP
We had several appointments last week and our heads are still spinning.
On Wednesday Aaron had a spectroscopy, which apparently is a type of MRI that looks at chemical activity. On Friday we met with a neurologist (a new one, who specializes in muscle issues) and he said the spectroscopy results were inconclusive. He said there was one area of the brain that appeared showed high lactate but that could be in error. Otherwise they saw nothing bothersome.
So the good news is that the spectroscopy, unlike the MRI back in December, did not reveal any obvious problems. The bad news is that we seem to be no closer to a diagnosis.
The neurologist wants more tests -- a CAT scan and an EMG. Those, fortunately, don't require sedation. We are scheduling these next. At some point he and the metabolic specialist are going to want to do a muscle biopsy.
In addition to the neurologist, we met with a geneticist who, after asking us a lot of questions, ruled out any problem with her area of specialization -- I forget the name but it would be things like chromosome defects. So that area of inquiry is closed.
In addition to this, we are switching Aaron to a new primary care pediatric practice which is willing to take children with chronic health issues. Two of the doctors there will become our "case managers," so trained MDs are looking at the big picture of Aaron's care -- which we're doing alone right now.
Aaron has regressed in feeding and this causes tremendous difficulty for him and Clarice. We are going to take Aaron to the feeding clinic at CHOP for further help on this. The new pediatricians also want us to take Aaron to the gastro-intestinal clinic at CHOP to see if he has reflux. This will involve a barium swallow, not pleasant for anyone especially a 2 year old.
Finally, also on Friday at CHOP we met with two therapists to discuss whether Aaron is currently receiving sufficient PT, OT and speech therapy. Seperately, we have started the process of planning his school/therapy program for the fall when he turns 3.
I think that about covers everything, but obviously its hard to keep track of it all, and make sense of it all.
On Wednesday Aaron had a spectroscopy, which apparently is a type of MRI that looks at chemical activity. On Friday we met with a neurologist (a new one, who specializes in muscle issues) and he said the spectroscopy results were inconclusive. He said there was one area of the brain that appeared showed high lactate but that could be in error. Otherwise they saw nothing bothersome.
So the good news is that the spectroscopy, unlike the MRI back in December, did not reveal any obvious problems. The bad news is that we seem to be no closer to a diagnosis.
The neurologist wants more tests -- a CAT scan and an EMG. Those, fortunately, don't require sedation. We are scheduling these next. At some point he and the metabolic specialist are going to want to do a muscle biopsy.
In addition to the neurologist, we met with a geneticist who, after asking us a lot of questions, ruled out any problem with her area of specialization -- I forget the name but it would be things like chromosome defects. So that area of inquiry is closed.
In addition to this, we are switching Aaron to a new primary care pediatric practice which is willing to take children with chronic health issues. Two of the doctors there will become our "case managers," so trained MDs are looking at the big picture of Aaron's care -- which we're doing alone right now.
Aaron has regressed in feeding and this causes tremendous difficulty for him and Clarice. We are going to take Aaron to the feeding clinic at CHOP for further help on this. The new pediatricians also want us to take Aaron to the gastro-intestinal clinic at CHOP to see if he has reflux. This will involve a barium swallow, not pleasant for anyone especially a 2 year old.
Finally, also on Friday at CHOP we met with two therapists to discuss whether Aaron is currently receiving sufficient PT, OT and speech therapy. Seperately, we have started the process of planning his school/therapy program for the fall when he turns 3.
I think that about covers everything, but obviously its hard to keep track of it all, and make sense of it all.
posted by tylertoo at 1:02 PM
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