We were told Keira's info would be faxed to her Neurologist in Maine on Monday and he should do a med change THAT day. That, of course, did not happen. He called Monday afternoon, asked for info and said he would give me a call back. I waited for a call on Tuesday. Nothing. After 3 phone calls to him on Wednesday (2 from me, one from Seth) he finally called back and said that the discharge summary from Children's did not have enough info. We had MD's lined up to put pressure on him to work on Keira if he did not call back and Seth was going to storm the office by Thursday. I told him to go to the link of her seizures on YouTube so he could see what was going. He did not have the precious EEG results in his hands from Boston and did not feel as though he could make a med change without them. He looked at the video and ordered an immediate increase in Depakote again. Her diagnosis right now is two types of seizures. Clonic and Myclonic. Only two days and no changes. It usually takes a few. On Monday we will go for blood work and he will probably add a medication on top of it.
We are waiting for our appointment with Dr. Expert in Boston on Nov 9th. Apparently, all of the other Neuros are scared of doing something because Dr. Expert might change everything???. I have no patience for this stepping on toes crap. Yes, Neurology is not a perfect science, but at least you could try SOMETHING??? We will start bringing her to a feeding clinic at Maine Med so she can gain weight and get the right nutrition and I decided that I will work on her with bearing weight on her legs on my own. She hates it, but it seems to be her only PT problem and it may be resolved once she is on the right seizure medication.
I find it very frustrating at times that MDs do not want to step on someone else's toes when it comes to a BABY's developing brain. The next time someone tries to defer us to the next Neuro I may have to be refrained from slapping him/her upside the head. It is ridiculous that we are getting the run around about this. R.I.D.I.C.U.L.O.U.S. In the meantime, I will try to fill my time with, taking the best care of my kids as best as possible and doing projects around the house so I don't think about it too much.
OUR FAMILIES JOURNEY: OVERCOMING A DIVERSE AMOUNT OF LIFE'S CHALLENGES. Type 1 Diabetes, Autism, Epilepsy and G-Tube Feeding.
2 comments:
Ugh - This is so frustrating. You put all your energy into taking care of your daughter and trying to make sense of things and you have to wait for wheels to turn. I'm so sorry you're dealing with this. Wonder if the State realized how much money they save with mothers as case managers and paperwork chasers? I hope these seizures resolve.
Thanks Heather!! I chuckle to myself when people ask if I work. I was on the phone all day today and just took time to write a post because the wheels are turning faster now and we are very happy about it.(wanted to share my joy) Hoping the seizures resolve soon too!!
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