Here’s your chance:
“I laughed. I cried. It moved me.” — LadyBug
Here’s your chance:
“I laughed. I cried. It moved me.” — LadyBug
Miss Attitude’s neurologist appointment was yesterday. Without going into a lot of long, drawn-out detail, I’ll just make a long story short and tell you it was good news, all around. Since the MRIs and VEP came back normal, he really didn’t think we had anything to worry about; the abnormal “protein band” in her spinal fluid, in and of itself, was not a clear indicator of MS…was, in fact, “really nothing to worry about.” (*insert huge sigh of relief here*) He also doesn’t think Miss Attitude has papilledema (optic nerve swelling); he thinks it may be pseudopapilledema, in which it just appears swollen, but actually isn’t. He’s sending her to a pediatric ophthamologist, who will – I assume – confirm or refute the neurologist’s finding. The headaches, he says, sound like childhood migraines, and for now we’ll just treat them with Tylenol and Motrin unless/until she needs something stronger.
As if all the headache/MRI/optic nerve/spinal tap/neurology crap wasn’t enough, Miss Attitude is currently recovering from yet another round of pneumonia, her third? or fourth, maybe? episode of pneumonia in the last several months. Her pediatrician has spoken with her pulmonologist, who wants to do another bronchoscopy to try to find out why the poor kid keeps getting pneumonia. She’ll have that on June 13th, this time under general anesthesia. (Her last bronchoscopy – two years ago – was done under conscious sedation.)
I’ve been fighting what I’m pretty sure is a sinus infection. It started as a cold – or allergies, or a combination thereof – about three weeks ago, and has steadily continued NOT to improve. I have neither medical insurance nor the money for a doctor visit or prescriptions, especially in the wake of all of Miss Attitude’s recent doctor visits and prescriptions, so I’ve just waited and waited for things to get better…for my head to stop throbbing and my nose to stop dripping and my sinuses to stop draining and my throat to stop hurting and my cough to stop…erm…coughing; but, alas, my body seems to have chosen not to heal itself, and I finally gave in to Deputy Dad’s demands and let him call his doctor to make me an appointment. He called to let me know they had scheduled me for 4:00…NEXT Tuesday. My response? “Hell, just forget it…I’ll either be better or dead by then!” Geez.
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:
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?
Hi, hello there, yes, we’re home. Exhausted. Drained. Spent. Weary.
Miss Attitude got through the lumbar puncture just fine. She said (her words), “It hurt A LOT, but not as much as I thought it would.” She did great. I, on the other hand, almost passed out halfway through. But Miss Attitude did great.
Thank you all so much for your thoughts, prayers, good vibes, etc. It was so comforting, knowing you guys were thinking of us today.
I’ll try to write more about today another time. Right now I’m too mentally, physically, and emotionally exhausted to form coherent thoughts. I just wanted to get on the computer long enough to say “thanks” and to let you know everything went well. Good night, friends.
Miss Attitude’s ophthalmologist appointment was rescheduled for this morning, so we just got back from [larger town an hour away, where we go for shopping and doctor appointments].
The good news: The MRI was normal. No tumors or abnormalities. That’s pretty much what the doctors expected; they just wanted to rule out anything major.
The bad news: The next step in the diagnostic procedure is a lumbar puncture (spinal tap).
All signs are pointing to Miss Attitude having pseudotumor cerebri, which is what our pediatrician suspected. The lumbar puncture will measure her intracranial pressure; the ophthalmologist said if the pressure is below a certain number, we’ll just keep an eye on things; if it’s above that number, he’ll send us to a neurologist for treatment.
I don’t yet have a date and time for the lumbar puncture; the ophthalmologist’s office will schedule it and give us a call. But I’ll be sure to let you guys know, since we’ll certainly need your prayers and good vibes that day. I’m already a nervous wreck, just thinking about it.
*UPDATE*: I found out at 4:45 this afternoon that Miss Attitude’s lumbar puncture (I just hate the phrase spinal tap if for no other reason than because it invokes images of a 1980s heavy metal rock band.) will be at 9:00 (Central time) tomorrow (Thursday) morning. (Unless I’m mistaken, that’s 10AM Eastern time, 8AM Mountain, and 7AM Pacific. You can revisit this post for a time zone chart.) I appreciate any prayers/thoughts/good vibes you might send our way, as I’m pretty much a nervous wreck right now. (But, hey, at least I don’t have a week’s worth of anxiety to build up, right?, since HOLY CRAP my baby’s having a spinal tap TOMORROW.)
Which reminds me…I can’t tell you all, truly, how much your comments, suggestions, and emails helped us prepare for and make it through last week’s MRI. So if anyone has any advice regarding the spinal tap, please feel free to share it with me.
I was so exhausted by the time Miss Attitude and I got home last night, I didn’t even get on the computer; so I apologize for not letting you guys know that everything went fine yesterday. Here’s a short list of what you prayed (and good-vibed) us through yesterday:
I guess we’ll get the results of the MRI when we go back to the ophthalmologist next Thursday. I’m gonna try to put my anxiety on the back burner until then, since there’s really nothing I can do anyway.
I can’t thank you guys enough for your thoughts, prayers, and good vibes. I thought of you all many times yesterday, and it helped me relax and smile a little, knowing the blogosphere was thinking of us. Thank you.