We saw the Neurologist today. I didn't recognize the name, and at first didn't know her face but then she said "Hi! It's nice to see you guys again!", uuuummmmm, "again?" I said, I was so confused! Apparently this Neurologist is the one who was on Miss K's case in Primary Children's during her long stay as an infant. After talking for a while I started to recognize her face and remembered her just a tiny bit.
So, the news hasn't changed much. Yes Miss K is likely having migraines. At first it was a "no" we don't need to do any testing unless Mom wants it, and my answer was "no". She was just as baffled about the episode in July as the rest of us are but had done her research in the last week knowing Miss K was coming in.
We got to talking and she asked more and more in depth questions about Miss K and her overall personality.
I talked about her eating issues...Miss K doesn't eat. At meal times she constantly moves around until we give up and buckle her into her booster seat, she doesn't put any food into her mouth, we have to instruct her through the whole eating process and it takes an hour minimum to get a somewhat OK amount of food into her, what do I mean "instruct?", exactly that, every step: "(Miss K) pick up some food, now put it in your mouth NOW", all said VERY slowly, VERY pronounced, each word said very clearly and separately. If we don't instruct her she will sit there and never touch her food, no matter how hungry she is. It's clearly not for attention as we've tried not doing it and she'll go days without more than a bite to eat each day, we've tried giving all 3 kids the same amount of positive attention at the table, keeping the negative out of the picture, so that she doesn't feel we're not paying attention to her enough, we've tried excusing everyone from the table and leaving her there longer without anyone to distract and she touches nothing on her plate for up to 30 minutes before we give up on her and let her get down as well. She's not a snacker, she never has been, no matter how hungry she is she doesn't snack.
I talked about her slow thought process...Miss K doesn't understand most directions and the words "no" and "stop" when she's in trouble do absolutely nothing, no amount of loving guidance gets us anywhere with her, every love and logic thing we've tried has gone past her without even pausing, when we need to get the point across it takes 4-5 times of telling her "no" or "stop" until we get into her face and make her look us in the eye and VERY firmly, showing how upset we are with facial expression, telling her "NO!" or "STOP!" before we suddenly see a light bulb turn on in her eyes like "Ooooohhhh! Mommy said no!" and then she quits. Every instruction she is given has to be done very slowly with her looking us directly in the eye and even then she doesn't get half of it. She's very slow to process things she's told.
I talked about her speech...Miss K is very hard to understand. We understand her 21 month old brother clear as a bell but not Miss K at all. Her Pediatrician said if 3/4 strangers can't understand her then she likely needs speech therapy. Well, more than 3/4 FAMILY can't understand her let alone strangers. Simple requests from her for some things are understandable to Mommy and Daddy but not clear at all. When she tries to tell us a story, like what she did at Preschool, it's a jabbering mess that she repeats over and over like a broken record until she thinks she's told a great story, not one word understood by the listener, even if it's Mommy or Daddy.
The Neurologist changed her mind about the testing after this conversation. She thinks we should do an MRI, she thinks it will help to know how Miss K's brain works. She said after the MRI we might do some cognitive testing as well.
The plan of action after today is for the Neurologist to contact our EP Cardiologist and get his permission to do an MRI, because it must be sedated and that can be dangerous for Miss K's heart rate so we have to make sure her EP Cardiologist feels comfortable with us having it done, if he does not clear it then we will just skip it, it won't hurt anything it will only help to have an MRI. Secondly we are putting Miss K on a daily anti migraine medication, it hasn't been prescribed yet only because, again, we have to clear it with her EP Cardiologist and the Pharmacist, make sure it will be OK to give with the Propranolol and Digoxin as well as be OK for her heart rate.
Also, while I'm updating, we have started the process for speech therapy. Some think age 3 is way too young to even worry about it. It's not too young, it's not too early, it's not pushing Miss K to learn faster than she needs to, blah, blah, blah, blah. The Dr.'s say she's OK if she doesn't qualify for it, or if I prefer she not take it, it's not important so, no, it's not the Dr.'s or any teacher trying to push it on me because kids are being pushed too hard too soon. I made the choice to see if she even qualifies for a number of reasons.
Number 1: I cannot understand her, half the time I cannot even guess what she's trying to say and it's frustrating for me to not be able to help her, it's frustrating for her to have nobody understand her. When she asks me for something..."Mommy, I want a shiosay"...I ask her to repeat it, and apologize for not understanding her, about 5 minutes later she's repeated it over and over again and can't say it any other way and I absolutely cannot figure out what she's asking for so I end up saying "I'm so sorry baby, I can't understand what you're asking for, I'm going to have to say 'no'", I want to cry, she wants to cry, and we end in a heap of hugs :(, this is a daily occurrence.
Number 2 I would rather her start speech therapy now while she's young and still learning, her way of speech is not ingrained in her brain, she's not quite used to it yet so it's not as hard to change it, and I'd much rather have her either done with speech therapy or already in it and getting help when she starts Kindergarten, I really don't want her to start Kindergarten having been only helped at home and be told that she needs speech therapy, which may or may not happen but I'd much rather avoid it however possible.
Number 3 speech therapy through the school is free, so why not do it if she qualifies? I won't pay for a private therapist, if she doesn't qualify we'll just keep working on it at home and try again next year if I feel she still needs it.
As of right now we've started the process with the hearing and vision specialist, she passed the hearing and vision part with flying colors, even impressed the specialist. The speech part she was right on the border, a score of 18 is allowable at age 3 and she got exactly 18, which doesn't always happen, as far as her understanding speech when being spoken to and following directions goes the specialist said she is behind developmentally and he said even though she scored an 18 she is really behind in her speech. From that round of testing the verdict was it can go either way, she has two more people to see and test with and those tests can easily tip the scale either direction. We see the next specialist for testing next week.
We have a lot going on. As soon as Miss K's EP Cardiologist is contacted we will know what to do and when. I'll keep updated as I can.
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