I’ve been absent (not blogging much) or semi-absent (reading blogs, but not commenting much) from the blogworld quite a bit lately. For those of you who don’t know what’s been going on, here’s an excerpt from an email I sent recently (this will also help you “catch up,” if you missed the last few entries):
Miss Attitude started having headaches a few weeks ago. I knew she’d mentioned them a few times, but I didn’t think too much of it – thought it might be allergies or something – until I ended up having to pick her up from school because her head was hurting so badly. We saw the pediatrician the next day. He gave her a very thorough exam, checked her vision, and paid close attention to her eyes. He then referred us to an ophthalmologist, who found some swelling of her optic nerves. The ophthalmologist sent Miss A for an MRI of her brain, which came back normal (except for showing a sinus infection, for which she’s on antibiotics now). The ophthalmologist and the pediatrician were thinking she probably had pseudotumor cerebri, which occurs when the body either produces too much cerebrospinal fluid (CSF) or doesn’t absorb the CSF quickly enough; the excess fluid puts pressure on the brain which causes the headaches, optic nerve swelling, and can lead to loss of vision if left untreated.
Unfortunately, the next step in the diagnosis was a lumbar puncture (spinal tap), wherein they would determine the amount of pressure in the CSF. Miss A had that done in [larger town an hour away, where we go for doctor appointments and shopping] on Thursday, February, 8th. Her pressure turned out to be in the normal range, and the pediatrician said it was entirely likely the pseudotumor had resolved itself; apparently, that’s not uncommon. At that point, we were just kind of keeping an eye on things until we returned to the ophthalmologist in a couple of weeks and he could check to see if her optic nerve was still swollen. Then we’d figure out where to go from there.
So we thought we had pretty good news, and thought everything was getting better…well, except for the fact that Miss A was having severe headaches – even worse than before we started all this, but those headaches were likely due to the spinal tap itself. Then the pediatrician called Thursday afternoon (2/15) and said one of the tests the lab had done on Miss A’s spinal fluid had come back abnormal. They found a “protein band” in the CSF that shouldn’t have been there. The pediatrician said it’s uncommon to find that protein band in the CSF of a child. It’s usually found in adults, and when they do find it, it’s usually an indicator of Multiple Sclerosis (MS).
Since MS is a disorder of the nervous system, the next steps for Miss A are nerve tests, another MRI, and an appointment with a neurologist.
She’ll have an MRI of her spine this coming Thursday (2/22) at 9:00 AM in [larger town].
No one in [larger town] does the nerve tests, so we’ll have to go to [Big City, even further away] for that. Miss A will have an EEG and a VEP (Visually Evoked Potential) test on Tuesday, March 13th at 8:00AM.
The neurologist appointment is tentatively scheduled for May 1st, but the pediatrician’s office is planning to call and reschedule that as soon as Miss A’s tests are done. Her pediatrician wants her seen within a month.
I won’t lie to you. I’m scared. I’m totally freaked out. I’m trying to hide that from the kids, but I’m a nervous wreck. I’m eating everything within a 10 foot radius (15 if it’s chocolate), which may not be as bad as binge drinking or doing drugs to handle the stress, but it’s destructive nevertheless. My depression’s getting worse – I can feel it trying to take over. All I want to do anymore is curl up in the dark and sleep. And I’ve developed nervous twitches in my eyes. Lovely.
And here I am going on and on about me, but it’s my sweet baby girl I’m asking you to pray for and/or send good thoughts/vibes to. I’m so worried about her. We didn’t want to scare her, so all we told her was that one of the tests on her spinal fluid came back abnormal, that there was “something” there that wasn’t supposed to be there, and she has to have more tests to find out what’s going on in her body. I’m just so damned angry that she’s having to go through this. She’s been through so much already. I just want to scream to the heavens, “JUST GIVE HER A FUCKING BREAK ALREADY!” (Please forgive my anxiety-ridden use of the f-word, there.)
Okay, now that you’re caught up, here are a couple of updates:
- Miss A’s MRI yesterday went well, but it took OVER. TWO. HOURS. Geez. Deputy Dad took her for that one (SuperBoy had speech therapy yesterday morning. I took Miss A for the last MRI, so she decided to let Dad take her this time so she could “show him how it works.”)
- Miss A’s headaches lasted for about a week after she had the spinal tap. Then she finally got some relief, and hasn’t had much trouble with headaches at all in the last week.
- I was surprised to hear from the pediatrician yesterday afternoon at 4:00. The MRI wasn’t finished until after 11:00 AM, but he already had the results:
The MRI was NORMAL. I repeat, NORMAL. (YIPPEE!)
- Since the MRI was normal (Normal! YAY!), the pediatrician says we’ll just keep the May 1st appointment with the neurologist. We’ll still go March 13th for the nerve tests.
Deputy Dad and I breathed a huge sigh of relief after the pediatrician’s call yesterday. We’re still a bit worried about what the nerve tests will or won’t show, and where we go from there, but at least we’ve gotten one worry out of the way with one simple word: Normal!
The stress from all of this is definitely taking its toll…mentally, physically, emotionally, psychologically…and with all the doctor appointments, tests, missed work, and the gas for all the trips back and forth to [larger town] – not to mention whatever snacks/drinks/meals are necessary during the course of each trip – this situation is definitely taking a financial toll on us, as well. So imagine my delight when a Mr. Samba Ibrahim emailed me from the African Development Bank and asked for my assistance in “a legitimate arrangement” concerning 25.6 million dollars in unclaimed funds! He didn’t specify what sort of “personal information” he needs, but he did express a sense of urgency, so I figure I’ll just send him my name, address, phone number, social security number, and a copy of my credit report, complete with credit card and bank account numbers. That should give him enough info to get me well on my way to my financial windfall, shouldn’t it?
Posted by LadyBug 
Imperfect Symmetry 