After I wrote my post last night, the pediatrician returned my call. She apologized and said she goes out of state twice a year and leaves her pager, and yesterday was one of those days. She said I can have her paged any time, even if she isn't the on call doctor. She is amazing, in case I haven't explained that to you all lately. Amazing. If there are pediatrician of the year awards, I need to nominate her, because WOW. She is wonderful. She said she would call and get the MRI results first thing in the morning and call me. We were walking around the hotel (which isn't a hotel as much as a built in zoo/theme park) when she called. I ran back into the lobby so I could hear, because the waterfall was a tad noisy.
The MRI wasn't clean. She has lesions on 3 of her lobes; both parietal lobes, and her frontal lobe. This explains the speech problems and motor function difficulties. What is unclear is what the lesions are and what is causing/has caused them. She mentioned metabolic diseases, in-utero infection such as CMV, and even stroke. She said there were no calcifications on the CT scan so stroke is unlikely, but not impossible. She couldn't get in touch with our current neuro, but she did contact a friend of hers who is a neurologist in the same clinic. She has been discussing KayTar with him for a while now, and she is referring us to him when we return. She and I both feel like the current neurologist dismisses our concerns and already has his mind made up. She said that when she calls him she has to get everything out in one breath because as soon as she takes a breath he says "Oh, Dr. I think everything will be okay." When I saw him in the clinic I felt like it was a totally wasted appointment because he already had his mind made up. The pediatrician said that she trusts the new neurologist and thinks it is a good idea to get more eyes in there. He will take good care of KayTar because he is friends with her pediatrician.
When we return home, KayTar sees the opthomologist on Monday, and then later in the week we will see new neurologist. After he examines her, she will be admitted to the hospital for testing. They will be doing more blood work, clotting tests, an extended EEG (24 hours), an MRA to look at her arteries/veins in the brain, and whatever else strikes their fancy.
I am thankful the MRI came back showing us something, even though it felt like a punch in the gut. If it was clear, we would be lost, treading water, no place to go. Since it isn't we have a direction, things to look into, tests to narrow things down. I am thankful for this week, the break from everything, because when we come back it starts up in full force. I am thankful for our pediatrician and her genuine concern for us and KayTar. I'm thankful that we aren't quite as lost as we were yesterday.
6 comments:
Dear Kyla,
I don't really know what to say except that I am blown away by the strenght that you and Josh obviously possess. I'm sure that there are times where you don't feel like you are strong, but you are.
I will be thinking of you and your KayTar and your family and hoping that you find some way to hold on to each other and that strength you have throughout this ordeal.
My thoughts are with you...
Jill
You seem to be handling this so well. I hope you are able to get to relax this week ....
I'm impressed by how well you seem to be holding it together. I'm glad the MRI results have help to point you in the write direction... I hope you get some more answers soon.
Having troubles with blogger today...hope this isn't a re-post.
Hi- I posted yesterday and said I'd offer whatever advice I could, having been through most of what you are going through. Please realize all I say isn't to alarm you, but give you things to cross off your list. Not all neuros tend to think of these things.
My thoughts based on the MRI would be to check out Tuberous Sclerosis (www.tsalliance.org). This would explain the seizures, the developmental delays, the lesions in the brain. The ophth appt will help because lesion (tubers) can form in the eye nerves as well. Also, you'd want ultrasound scans of her liver, kidneys and heart because tubers can grow there as well. Things you can look for are hypo-pigmented spots on the body (essentially locations that have no pigment- easily seen under blacklight), also any unusual growths around nail beds (think almost wart like). Actually in the last PGR there was a post about it (http://theclayexperience.blogspot.com/2006/09/elementary-my-dear-bartram.html). TS is very treatable. My son has a mutation on one of his TS genes, but it is 'supposedly' a non- disease causing mutation. However, the only drug that controls his seizures is a TS related drug. Personally, I think it's not a coincidence.
As for an MRA...ask about Moya Moya Disease...very unusual, but could explain the seizures, the dev. delays and the stroke-like qualities she is presenting. The MRA will check blood flow and Moya Moya is characterized by reduced blood flow to the brain. Check out the blog of this little girl I know through my epilepsy support group.(http://www.daphnestory.com/About%20Moyamoya%20Disease.htm). The website is out of date, but it's got good info on Moya Moya. As I sais it's HIGHLY unusual, but one of the last thing neuros think of. The neuros thought of it almost too late for this little girl...but she is doing good now that she had surgery. Also, be aware only two neuros in the whole country do this surgery, Dr Michael Scott at Boston Childrens (he did my son's brain biopsy on his temporal lobe lesion) and Dr Steinberg at Stanford.
Aas for the EEG, if she were my little girl, I would ask that they keep her on EEG until they 'record' an actual seizure. maybe this has already been done...not sure. As I said I am new to your story.
Again, I hope this little bit of info is helpful. GOOD LUCK!
Jen
austinbenconnor.blogspot.com
You are so brave. I can only imagine how hard this news is, but at least it's news. I hope that some good can come of it.
Our prayers are with you...
Wow. I can imagine how it would be a relief to get some answers, even if the results are not good. So glad you have a good doctor.
Post a Comment