we had our 4 week check-up with the neurologist. and it went so "well" that i called her old neurologist and made an appointment with him... He said that the seizures she is having do not have a name. he also told us that the seizures themselves don't hurt her or cause any damage to her brain, but that the electrical activity that is going on is causing severe brain damage. the medicine we were prescribed initially seemed to make the seizures more intense. we told him this and he switched from a liquid to a sprinkle form. we just started it this past weekend so we will see how it works. he does not want to do any other tests (besides the blood levels) because he doesn't think it's necessary. i asked him about doing an mri to check on the cysts on her brain and to check for tethered cord, he does not want to do an mri. he did the same thing at this visit that he did at the first one, he walked in the door and instead of introducing himself he made a comment about how trisomy 18 children don't live as long as she has. he really needs to check with some of his colleagues because we have had conferences in this hospital, they have seen kids MUCH older than kaiya. he also ignored her completely at this visit. would it kill him to acknowledge her presence? we were given a copy of his report that he sent to kaiya's pediatrician. it seriously looks like it was written by a kid that got a hold of a medical journal, took some really large words out, and repeated the same phrase over and over again. all that goes through my mind when i think of this doctor is the old joke "what do you call the guy that graduates last in his class in medical school?" i feel like i should apologize to kaiya for subjecting her to substandard care. i feel like i should apologize to her school for not having any good answers to give them.
kaiya's previous neurologist was great. he seemed a little odd on our first visit, but he was really thorough, and he talked to kaiya. we haven't seen him since 2007 because kaiya wasn't having any seizures at that time. luckily as long as you get in within 3 years you are considered a returning patient. our last visit was april 19th 2007 - our next appointment is april 14th. we are getting in just in time!
other than the seizures nothing else is new. kaiya has been pretty healthy for the most part(besides the seizures), although she does seem to be a little congested today... she loves going to school everyday and the staff at her school is amazing. they are being very understanding and giving me more info about seizures than the neurologist is. we are waiting for the warmer weather so we can get her bike out and go to the park to ride the swings.
3 comments:
I hate "ducks."
I'm not sure if you have the same terms or not, but we "Lyme patients" call doctors that have their heads up their butts "ducks." It stems from them being "Quacks."
I hate that you had to see a duck. :( Glad you got into see her old neuro.
I have a trisomy 18 child as well and have also experienced this form of ignorance from doctors. I am sorry both of you were subjected to this when what you need is competence, compassion and an open mind from your medical team. I hope you find help for your precious daughter so she can return to her regular activites soon, and be safe. Good luck!
Marianne ( mom to Nalah, 17 months)
I hated even reading this, because I really understand that frustration about having someone look at your child as "type" of child, instead of as a person. Fortunately, we ended up meeting a delightful neurologist at the end of our hospital stay. Reading your post reminded me that he came really close to mallorie and spoke in a high-pitched baby talk to her. I can't remember what he said, but just that he was so loving in his interactions with her. I want that sort of loving attention for Akaiya.
Hey, I "think" (but would have to check again) that we have our very first out-patient visit with this neuro the same day as your appointment with your chosen neurologist. Means nothing, really - I just thought it was neat.
I hope you are able to get some answers and some helpful input on your appointment.
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