Last appointment?

After 8 months of continuous doctor visits and appointments, it seems like we may have had our last one for a while! The urologist is extremely happy with her progress. Instead of 4 or more accidents a day, she’s down to 1 or 2. And the leakage is almost gone. She’s also now dry again at night, after about 3 months of having 4-7 wet nights a week. The urologist said she’s not retaining enough fluid for her to need self catherisation! I’m soooo happy. It was one of my main worries after the botox. That the injections would paralyse too much of the bladder and cause her to retain fluid. The urologist injected 100 units, and said it is a real possibility. The urologist asked us to make sure that she learns now to wait before running to the bathroom. It will stretch the bladder which may improve the last few accidents as well. He’s still sure that after another round of botox in about 6 or 9 months time, she’ll outgrow the bladder problems.
Though, he again mentioned the short filum (tight filum terminale syndrome/tethered cord) and said that it still is a possibility because of her other symptoms. So far, her symptoms are:

• Spastic/hyperreflexive/uninhibited Neurogenic bladder (bladder has Christmas tree shape, with detrusor contractions of over 110) and incontinence
• Constipation and impaction with fecal incontinence
• One leg a tiny bit longer than the other (about 1cm)
• Both feet have high arches (left feet more), though no clawed toes
• Left leg comes out of the hip bone at a tiny bit higher angle than normal
• Leg pain (shins, feet and calves)
• Left foot drop, but only when she’s tired or lazy. It causes her to fall/trip/scrape the toes numerous times a day.
• Left foot turns inwards at the toes a bit (toe-in). Nothing too severe though.

All her leg symptoms are small/tiny/not severe. Just mild. Which makes it difficult to get much attention from the doctors. I feel so sorry for her because she’s always falling and hurting herself, and I can’t help her.
Back to the appointment…the urologist said that I should keep a diary of her leg symptoms and number of times she falls a day. For 6 months, and then come and see him again. He believes that the botox would help for longer than the 6 months, but he wants to keep an eye on her. And then we can talk again about the leg symptoms. He said that even if it is a tethered cord, it shouldn’t do much more permanent damage to wait 6 months. Except if the symptoms gets worse suddenly, in which case we need to follow up asap. But else, we just wait and see. Hopefully he’s right and she’ll outgrow the spastic bladder with the help of the botox calming it down.

One thing that amazes me, is that her tantrums and frustrations have calmed down with the botox as well! A few months ago, I started to wonder if these spasms are painful. And I realised that it may be the cause of her horrible tantrums. It seems I was right, because now that the spasms has calmed down, her tantrums is so much less! Since she’s been 10 months old, she’s been throwing these horrible horrible tantrums that would just go on and on and on… I always thought them a bit abnormal, but everyone else was just suprised that this sweet, tiny, shy little thing is throwing tantrums at all…LOL. Since age 5 I have disciplined her quite hard for tantrums, and now I feel very guilty. Because who would’ve thought that it had a physical origin? The poor thing. I can just imagine how confused, scared and sad it must’ve made her to have all these painful sensations and you don’t know where it’s coming from, why it’s happening or what to do about it. It saddens me no end to think of her as a little girl, being in pain and unable to tell her mommy, and then being disciplined for acting out. How awful.