I reported that Kaylee has been making some strange new movements, but we haven't seen her make the exact same movements each time that we have noticed. They are similar. She gets a blank stare on her face then kind of holds her hands up. She does this about 4-5 times a month, so it's not all that often. However, she is on Topamax.
We also reported that we were unsure whether or not she was having seizures at night, since she hasn't sleep in our room in months.
We reported her results of her OT and PT evals and the EI's reports. She is currentlyfunctioning at about an 8-9 month level overall. She is going on 13 months now.
He basically told us that because she was making progress he wasn't concerned. I asked why he wasn't concerned, since as of our last appointment she was only about a month or two behind. He said that since cognitively she seemed on track, that he wasn't concerned with the fine and gross motor being off.
He also seemed very fixated on the diagnosis of TSC, even though I had brought up that she doesn't show any other symptoms of TSC. Our family shows some symptoms, but nothing conclusive. She has completed the genetic testing which was also inconclusive.
I challege the diagnosis because I just don't get a strong gut feeling that it's right. My gut has been right so far, so I tend to listen to it.
I am concerned about a 13 month old baby that just began crawling two weeks ago. Kay is not standing on her own or walking. I know that the walking deadline is 18 months, but I'm not going to burry my head in the sand until then. Sorry, I made the mistake of listening to a
doctor tell me my baby was ok once already and Javi turned out to have Autism. Fortunately, Kay already receives a lot of services that Javi missed out on with out a diagnosis, but that is exactly my point, how far behind would she be without them? Would he be more interested in
getting to the root of the problem then?
We are in the works for a repeat vEEG, but I pretty much had to push for a repeat. He increased her meds for the time being.
I know that it may not change the treatment plan, but something tells me something is a miss. I think it's time for a second opinion.
(Sent from my iPhone)