I spoke with the pediatrician today. I love her. She has such a calming effect on me, it is really miraculous in itself. She called the hospital and confirmed it was their mistake and that we are going to have to live with it. She said they are AWFUL at making up for their errors, but great at what they do. KayTar has a clean (which in itself was disputed) CT scan, which makes her ineligible for a rushed MRI. They don't see it as urgent. I asked her to call and see if they could give me a spot next week and bump someone up to my old appointment (a non-barfer). She is checking on that as well as calling a doctor friend of hers who has opened up a private MRI practice. He does accept pediatric cases, but she is unsure whether they have the ability to sedate. If they can sedate, she can get an appointment there next week. So all hope is not lost.
I explained that the main symptom KayTar exhibited on her Wednesday episode was drunkenness, and asked what part of the brain that would happen in and if that gives us any new clues. She said the cerebellum controls that type of thing, and it is actually fitting with a basilar migraine, which fits in with the whole migralepsy diagnosis. This makes us BOTH feel good, because we haven't quite been comfortable with the neurologist's diagnosis and the fact he has his mind made up. I looked up basilar migraines and it pointed to information on transient ischemic attacks . The symptoms for transient ischemic attacks are eerily similar to what happens to our dear KayTar, right down to the dizziness and head tilting and weakness in one side of the body. This scares me, because these are called mini-strokes and are caused by blood being cut off in part of the brain. They can signal a real stroke is coming. When I first found this information I was so excited. It was like "Yay! We're not all crazy, and we're actually on the right track.", but now I'm back to worrying. She is so young and vulnerable. We've let these things run their course every time, what if that was wrong? What if it is damaging her brain because of the lack of oxygen? Honestly, we couldn't get to the hospital and into a room before they are finished, they usually aren't more than an hour and the hospital is 30 minutes away and the ER takes forever...but I can't help but wonder. The thought of a diagnosis out there makes me happy, it does. She is just so young to be going through this...it makes me sad. What if we have been making the wrong decisions for her? What if this will permanently affect her? I feel so lost in all of this. I feel like our hopes of getting an answer have been lifted and dashed repeatedly. I feel weary and worried. I want to know what is wrong so badly, but I am a little afraid of the answers as well. If this is a piece of the puzzle, it is wonderful. We can start making informed decision from here on out. If this is the right piece, the meds WILL start helping. If this is the right piece, it can explain so much. If this is the right piece, maybe we can finally have some peace.
Each clue brings the hope of peace. I am glad the pediatrician is on your side. I can understand the high hopes and the frustration when those hopes are dashed.
As always, I cross my fingers that you will find resolution, answers, and a chance to breathe shortly.
Oh boy... I'm glad you are feeling calmer and that your pediatrician is so helpful. I hope that K gets seen quickly and you have more information/answers soon.
One of the hardest things about being a parent is wondering if you're doing the right thing for your child, especially when the stakes are high. But you're doing your best, and you're doing it with care and love, which is all anyone could do.
I'm glad you have such a good pediatrician, and I hope you and KayTar get the help and answers you need.
OOh my what a hard place to be in. Thankfully you have found some measure of peace. I will coninue to keep you in my thoughts and prayers.
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