Despite some of my dislikes with Rapid City, I have found that there are some really awesome aspects of it.
One of those is Sami's doctors. Her PCM is amazing. He is great with Sami. Doesn't talk about her like she isn't there, gets down on her level and is all around a very nice guy.
He is also very proactive about her health. If there is a concern, he has no problems getting her the help she needs. Her last PCM at Dyess was very stingy with any type of referral. She would practically need to be on Death's Door before giving her a referral.
Here is a quick re-cap of where we have come from.
In November/December 2009, Nate and I were giving her dinner when we noticed her eyes rolling back into her head and her body going absolutely limp. Honestly, at first I thought she was faking it. Even after the 2nd time I thought she was faking it. (Horrible parenting, huh?)
After a half hour and she was still doing it, I told Nate we needed to get her to the ER. We got dressed (It was of course the middle of the night) and headed to the Emergency Room. They got her back somewhat quickly, and the doctor came into examine her when she slumped over on the table and started seizing. He held her until it passed and checked her heart and lungs and did a neuro exam.
He diagnosed her with possible Absence Seizures and directed us to the local neurologist.
Her PCM called in a referral within hours of the ER visit and we had an appointment within a week. She had several more seizures that week including in front of her newly assigned Neurologist. (At least she had good timing?)
He confirmed the diagnosis of Absence Seizures and put her on medication to stop the seizures. he also ordered an EEG
Have you ever tried to keep a 3 year old awake all night? Yeah, it sucks. Especially when Nick Jr deems that night/day BEDTIME DAY! Yeah....all the shows were centered around sleep and bedtime
Screw you Nick Jr. You fail.
Anyway, we went in and did the EEG. A couple hours of trying to make your child hyperventilate and seize. . . Interesting day!
It came back clear. Which is great but at the same time, makes it difficult to diagnose the seizures.
During one of her appointments, the Neurologist noticed that during one of her seizures he saw, her heart rate skyrocketed. Now necessarily something you want in a child.
He ordered an EKG and blood work (The medication she is on can cause liver failure so we have to keep an eye on her levels)
We did a few more EEGs which came back normal.Her blood levels stayed pretty normal and her EKG came back clear.
Fast Forward to now.
Her neurologist left the practice he was with, and her PCM decided she needed some more specialized care so he referred her to a new Pediatric Neurologist. (Same practice, just different doctor)
Her first visit was today.
Now, due to Rapid City's lovely planning, the hospital and a majority of clinics and offices are on the other side of town. About 30+ minutes with traffic.
And her appointment was at prime rush hour time. Sweet huh?
We made it with a few minutes to spare.
We discussed her history and her diet. He examined her and did a few physical tests.
We talked some more and I asked him about her white streaks.
He said that her medication can cause some hair loss and changes, but usually only when they're much older. So he is curious if perhaps its a copper deficiency. He's not horribly concerned with it, but wants to keep an eye on it.
In order to get a better look at what is going on, he decided to skip the regular EEG we usually do every 6 months and go for a bit more extensive one.
On Monday, we will go in and do a Video EEG. Where she will be video taped during the EEG as well as be asked to watch television for a while to see if that will trigger them. She'll also be asked to hyperventilate. (Don't ask there's a reason)
After this test, Dr S has ordered an MRI with sedation to check for tumors and abnormalities. Which is the test I'm most concerned about.
After that, we'll do a 24 hour Holter Monitor to rule out any heart issues.
I'll update more as things go along!
(I started writing this on Thursday and just finished it. Deal with it :P)
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