Firstly, a little update. We went on holiday! It was so nice. We camped for a week. Just swam, rested and spent time with each other. We really needed this break. The weather was perfect. We mostly had sunny, hot days with blue skies.
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| They spent lots of time in the pool |
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| Yummy mommy, this chocolate cookie was nice! |
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| Can I have more? |
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| Mr N |
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| Boeboe |
Boeboe really tried her best to keep it all together, but that resulted in her being like a little energiser bunny! Hopping up and down, trying to control the bladder spasms as much as she can. It only lasted 3 days, before her energy ran out and she lost control, but at least then calmed down again. We had some family camping with us, so I totally understand why she tried her utmost best not to have an accident. It amazes me, the mind's power over one's body!
So back to today. We've been to the urologist. And I'm sad. He basically told us today that he doesn't believe anymore (like he said pre-botox, 6 months ago) that she'll outgrow her bladder spasms after the next botox session. He previously said she'll need 2 botox sessions, 6 months apart, then she'll be “all cured”. This time he said she'll need botox every 6 months for the next 5 years, and thereafter he'll implant a neuromodulater that'll stimulate the nerves. Hoping that it would be a more long-lasting and better working option for her than the botox. Though, for the next botox session, he will inject more botox into the bladder. Paralysing it more than the first session. For the first, he injected 100 units. Next time he'll inject 120 units. The problem is, if he injects too much, it could potentially paralyse the bladder to such an extend that she'll need to self-catheterise from there on. Which totally freaks me out, after her 2 absolutely horrifying experiences with being catheterised before. I honestly felt like I pinned her down while someone “raped” her body. That feeling, for the mother of a 6-year old girl, is truly one of the worst nightmares to experience. I will never, ever forget that tremendous weight that settled in my heart while I held her down with my body, looking into her eyes – so full of horror, fear, helplessness and utter terror. Screaming hoarse, raw, heart wrenching screams.
The urologist looked at the diary I kept about all her accidents (nr 1's and 2's!) as well as all her falls. And he asked us about her history again. And this time he said...”yes, it indeed is suggestive of an occult tethered cord”. He urged us to decide if we want surgery or not, and to find a neurosurgeon that knows his stuff. What a turnaround!!!
In the meantime, her botox session has been booked for the 15th of January 2011. It's shortly after school starts again after our summer holiday season. He unfortunately said he cannot help us with the nr 2 problem. Once she gets the neuromodulater in 5 years time (when her body has grown big enough to handle such an intrusive instrument), it may help for both bladder and bowel. Until then he has no advise. The good news of today's visit is...NO MORE MEDICATION!!! We can stop the oxybutynin! He said (precisely my thoughts as well!) that the little gain is not worth the severe side effects in her case! Whoohoo!!! I'm so relieved we don't have to go to grade 2 next year, with headaches every day and cognitive problems due to these meds.
Oh, and one last bad thing. Since coming home on Thursday, Boeboe complained about pain when urinating, so the urologist tested the urine and yes, UTI. A bad one. She's urinating blood now, but hopefully the a/b's will sort her out quickly. I feel so sorry for her.
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