School holiday

So we’ve been on holiday for 2 weeks already. Nearly 3 actually. This week, we shipped the eldest two children, Mr N and Boeboe, off to their grandparents. They live about an hour’s drive from us. We’ll fetch them over the weekend again. Our 2-year old, Monkeyman, is missing his siblings quite a bit. But I felt he just wasn’t ready to sleep out, especially not a whole week. He’s still so small, and so attached to me. It’s going well with Boeboe. She’s using a timer, and sets it every time she needs to go to the bathroom. She started off with one minute the first day, then two, then three, etc. before she runs to the bathroom. Thereby stretching the bladder and giving the Botox an even better chance of doing its job. The urologist was positive that this behaviour would help her stop the last accident she still have on some days. Let’s hold thumbs!

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.

Urologist visit tomorrow

Boeboe has her check-up with the urologist tomorrow. She received botox injections into her bladder two weeks ago, under anaesthesia. For her uninhibited neurogenic bladder. The doctor is going to check that she’s not retaining any fluid in the bladder after emptying. I’m a little bit nervous, because if she is, it would mean she’ll need to catherise herself. She’s had 2 catherisations before, and both were extremely horrid. She screamed like a banshee that’s being cut into little pieces from the bottom up. With the second one, 3 of us were necessary to pin her down…:-( We were unable to organise a playdate for Mr N, our eldest boy, so he and little monkeyman (the baby brother) will need to tag along. *sigh* Fortunately my husband decided to come as well, so I won’t have to cope with all 3 of them on my own at a doctor’s office.
I’m also going to ask Dr W if the fact that the botox isn’t working 100%, means her neurogenic bladder may not be a developmental problem? I’m still pretty convinced it’s an occult tethered spinal cord. But he’s reluctant to admit it, because her feet problems aren’t “bad enough” accordingly to him. As if falling on a daily basis, isn’t enough…:-( Why do moms these days seem to have to convince doctors that something is wrong with their children? Do they think we want there to be something wrong? Just the thought of my baby having a tethered cord and needing a back operation is enough to make me want to vomit. But should I just leave it be, if that is what I think it is? Because if it is, waiting 2 years to see if botox will “heal” her, could cause irreversible damage…:-(
Well, let’s see what the urologist, Dr W, says tomorrow…

Botox...but isn't that for frowns and wrinkles?

Dr W was very very kind and is a great doctor. By the time we saw him, it was already May. He told us that Boeboe's pressure was so high, no medication would ever help her. And that if we do not help her fast, by age 10 she's going to start learning more control. And instead of the bladder pressure pushing the urine out (causing an accident) it's going to push the urine into the kidneys, causing kidney damage. So we needed to preserve and protect her kidneys.

He said that there could be 2 causes. One is a developmental problem, and then she'd outgrow it after about 2 sessions where they inject botox into the bladder. Secondly, it could be an occult tethered cord. A hidden tethered cord that is not seen on a MRI. For an explanation on what a tethered cord is, read this post: http://roadtosanmichele.blogspot.com/2011/01/tethered-cord-explained.html
Or go to http://en.wikipedia.org/wiki/Tethered_spinal_cord_syndrome or http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm.

So dr W proposed botox to calm the bladder. It literally paralysis (it's a poison!) the bladder. But only parts of it are injected, so that the rest of the bladder are still able to contract, else self catheterising would be needed. This was done on the 10th of June. Under anaesthesia. It took literally all of 15 minutes! We were so scared and nervous, but she was a trooper. Woke up without any tears, and immediately demanded to stand up and go to the bathroom. The botox immediately stopped all the night time accidents that Boeboe started to have from March 2010. After 3 years of rarely wetting the bed, it became a nightly occurrence. Which stopped the moment she got the botox. Wow. Unfortunately, the botox had less of an effect on the daytime accidents. Only about 50% improvement. Maybe a bit more. It helped, it was worth it. But it didn't work fully.