Friday, November 12, 2010

Catching up to Now

So... the Neurology Department got involved since we were seeing seizures. They did 3 EEGs and an MRI. The first EEG they saw definite seizure activity and the MRI showed a little bit of brain damage in the top of her parietal lobe (possibly caused by oxygen deprivation) but no bleeding. They then put her on 2 more seizure medications to try and stop the seizures but they appeared to do nothing. Then they tried vitamin B6 which appeared to do nothing. They did all kinds of tests, neurotransmitter tests, metabolic tests, blood tests, urine tests, etc... a lot of them had to be sent somewhere else and we had to wait for weeks for them to come back. In the meantime we tried the meds and waited for them to fix something but the only thing they seemed to do was make her more and more out of it and less and less responsive. all the tests for deficiencies came back normal, but they put her on some more vitamins anyway. Slowly all the tests started coming back, and every single one of them came back normal. Recently the neurotransmitter tests also finally came back, also absolutely normal.Then they decided to get Genetics involved as well and so they started taking genetics tests, all of which have also come back normal. Once again, it's great that things are normal, but something clearly isn't normal! After realizing that the medications usually used on babies weren't working they decided to put her on a continuous EEG at the same time that they put her on a couple of really heavy medications and eventually put her into a pharmaceutical coma to try and "capture" the seizures, get a hold of them, and essentially "jump start" her brain in hopes that when they took her out of the coma they would be gone. Sadly that didn't work either. It was sure hard for Logan and I to see her in that comatose state. They had to put her back on the ventilator because she was so out of it that she couldn't even breathe on her all...and she just looked (I hate to say it)...dead. When they finally took her off the EEG and off the millions of medications, she was still having seizures every 2 minutes just like before. Even on the medications, her movements stopped because she was so sedated but the EEG showed that the seizures were still happening. Oh wait, but then it was at this point that they decided that they weren't seizures... uh... I'm so confused! Then they said, well maybe a little bit of it is seizures but most of it just looks like "abnormal brain activity". So, now our daughter just has abnormal brain activity that nobody knows how to fix. After all of this they decided to put together a "care conference" with us to kind of decide what our next goals should be and answer our questions, etc. That is when they said that they pretty much have no idea what is wrong with her, it could possibly be abnormal brain cells in general or something, but they really have no idea and they've done all the normal tests, they've done all the rare tests, and now they are getting into the "rarer" tests. SO... they have currently stuck her in the broad category of unknown brain problems that they get 2 or 3 of a year. They then gave us the "unknown brain problem statistics" saying that 70% of children like this stay exactly the same as they are right now and have a life expectancy of 3 to 5 years. Or... 30% of them EITHER get better and grow out of them...or they get worse... And then they went on to say something about that there could be a 1 in 4 chance that this is genetic...WHAT?! Are you serious!! How can they say that when they don't even know what is wrong?! I know that they just have to give us the worse case scenario so that we know what could be but seriously?! Needless to say, after the meeting I felt like my whole life had been ruined. It had gone from a one hour nightmare of "she has to be on oxygen for an hour" to "you quite possibly might not be able to have any more kids and you'll probably lose the one you've got in, at most, 5 years!"

1 comment:

  1. I am so sorry Sarah and Logan, I sure hope it's not genetic!!!!