Today, we went back to the neurosurgeon we saw in March this year. He really took his time, chatting to us and looking Boeboe over very carefully. As usual, he was kind, sweet and gentle. We showed him a video we took of Boeboe, clearly showing her drop foot and how her toes scrape over the floor, even causing her to fall on the video. He admitted that it does look like drop foot, but we'll have to see a neurologist on that, because he doesn't understand where it comes from, since she has no neurological deficits. (Aarrgghhh!) And that he thinks it therefore must be learned behaviour, and not neurological from origin.
So, he STILL does not believe or want to entertain the thought of an occult tethered cord. (An occult tethered cord is a tethered cord that is hidden, thus it is not picked up on MRI like a “normal” tethered cord). He pleaded with us to just wait. Wait until she magically outgrows all her problems. While I may have thought it possible if she only had the urinary incontinence, I simply cannot accept that one little girl could just by chance have so many of the symptoms of a tethered cord, but it is “just” developmental problems. It simply does not make sense to me. The neurosurgeon, dr M, asked us to please not let anyone cut her open...:-( Gosh, how does he think we must feel after a statement like that??? HE's the one that doesn't believe in an occult tethered cord. WE believe in it! And we believe our daughter may very well have this! To now ask us not to do anything about what we believe in...:-( As if we're going to put our daughter through unnecessary surgery and just let someone “cut her open”, for no apparent reason! Urgh! The visit has been a total waste of time. Why on earth did the urologist and pead insisted that we go back to him??? Next time, I'll follow my instinct and go to a new one!
It's not going well with Boeboe. She's struggling to cope at school. We (me and her teacher) believe it's the medication (oxybutynin) she's on. Up until end September she did extremely well. Then it started exactly one month ago, and things are going downhill fast. Her short-term memory seems to be affected (even more so than usual) and her concentration span is severely limited. She complains of daily headaches, severe enough to restrict activity. Her stomach has completely stopped again, and we're on high doses of lactulose, and some movicol (miralex) to keep at least some functioning. The oxybutynin meds (for bladder spasms) have a very limited affect on her continence. Surely this can't be worth it? But the pead wants us to continue using it, until we see the urologist in December.
We took Boeboe to a child psychologist for a few months. We'll continue next year, as the medical costs for this year has just been heaping up and unfortunately our medical aid (insurance in our country) does not cover it all. The psychologist said she's doing well, but definitely has some lingering issues with regards to self confidence. Which totally makes sense, given her problems and history.
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