The urologist we saw, mentioned that Boeboe may be very constipated, and would need a clean-out. So we took her to the pead in Dec 2009. She took x-rays and said that she indeed is impacted and prescribed movicol (miralex) to clear her out. We put Boeboe in pull-ups and gave her massive doses. It worked well. Almost too well. It was a huge mess. This didn't stop either the urinary or the feacal accidents. The oxybutynin didn't help at all either, it just caused major constipation again, horrible hallucinations and headaches.
Beginning January 2010, we took Boeboe to her orthopeadic surgeon for her yearly checkup. He diagnosed her at age 5 with a few small leg and foot deformities. Nothing serious and still "within normal limits for her age" so he just kept an eye on it. Her left foot had a toe-in, both feet had high arches, her left hip came out at a tiny bit higher angle than it should and her left leg was a tiny bit shorter than the right. On her checkup in January, he said she is doing well, but he was still worried about her issues, so he sent her for an MRI of the brain and lower back.
The MRI's were clear!!! We were grateful and thankful, but puzzled. Everyone, the pead, the ortho and us all thought she had a tethered cord. It would've explained everything. The bladder, the bowels, the constipation, the foot problems, everything.
We didn't know what to do next, so the pead and ortho both referred us to different pediatric neurologists. We went to both of them. The first one laughed at us. He said except for ADD, there's nothing wrong with our daughter. That she certainly was just naughty for weeing in her pants, and that she's lying when she says she can't feel her bowels move. And that I'm enabling her by cleaning her up (WTF?!?!?!). When I mentioned that I can't get an anal wink from her, he laughed (again!) and basically told me to my face, that I'm lying. We walked out of the appointment shocked, hurt, confused and extremely upset. And even more determined than ever to find out what was wrong with our daughter. For not a single moment did we think the neurologist was right. What hurt the most, was that there was a time we DID think she was lying. When she was age 4. But now, at age 6, we've passed that point and knew there was something physically wrong with her.
The 2nd neurologist was much kinder. She did a thorough evaluation, and said that there was just small ADD signs, nothing to worry about (yet). She also couldn't find anything "wrong" with Boeboe, so she phoned a nephrologist friend of hers, who said we must immediately go for a urodynamic study.
This was pure torture.
I lied on her chest, pinning her down, while she screamed blue murder. The bladder spasms continued to press the catheter out, so the nurse had to try so many, many times. And every time it hurt just terribly. But, the test was invaluable, and I'm glad we've done it. The nurse told me immediately after the test, that there was definitely something very wrong with the bladder. It's non-compliant and obstructed, and showed pressures of 110. Apparently sky-high. She gave me the name of a good urologist we should see, so I made an appointment.
The appointment was in March, and the urologist explained the urodynamic test to us. He said she had an uninhibited neurogenic bladder. He explained that when you're a baby, your bladder contracts continuously, expelling urine. That's why babies need diapers. Around age 2, the brain matures and starts to send signals to the S2-4 vertebrae nerves to stop the bladder contractions long enough for the bladder to fill itself to age appropriate volumes (250ml in Boeboe's case). Then only should it contract, when going to a loo with a full bladder. With Boeboe, the bladder started to fill normally and at 30ml already it contracted. At 50ml the contractions were so severe, she was unable to keep it closed. Somewhere along her spine, the signals from the brain to "inhibit" the contractions, got lost. I wasn't getting to the bladder, so the bladder reacts the same as a baby's bladder. The most probable cause is a spinal injury, acquired or congenital (like spina bifida, tethered cord, etc.). The urologist put us on another type of medication, oxybutynin immediate release, and sent us to a neurosurgeon for an evaluation.
The neurosurgeon was kind, soft-spoken and friendly. He told us that her MRI's really was clean, there's nothing he could see that could cause her problems. He said he doesn't believe in a tight filum, especially if it's not seen on MRI. I asked him about this, because in my research I read that sometimes tethered cord was caused by a thickened or tight filum, causing the same symptoms as what Boeboe had. He sent her for an upper thoracic MRI scan, to check for syrinxes or something else that could be at the root of the problem. Again, this MRI came back clear, except for a very vague signal loss in the upper cord. Maybe the beginning of a syrinx? I don't know.
The neurosurgeon said he couldn't do anything more for us. So back we went to the urologist. I told him that the medication made no difference to Boeboe's accidents, so what now. He said her pressures are just too high for medication to work. Her bladder pressure reached 110cm while in a normal bladder, it reaches around 20, maybe 40 when you urinate. In a damaged bladder, it could go as high as 50, causing reflux to the kidneys. Boeboe's was 110!!! He sent her for another VCUG scan, which again was torture. I think he couldn't believe that she didn't have VUG, with such high pressures. They again catheterised her, and this time 3 women had to pin her down, while a 4th, a dr, had to perform the test. The x-rays showed diverticuli and trabeculations, and a narrowed Christmas tree shape bladder neck. This pointed, again, to a neurogenic bladder. A bladder that does not get the signals from the nerves. Fortunately, again it did not show any renal reflux (urine pushed into the kidneys).
The urologist told us that he unfortunately couldn't help her any more. That shocked me. We were beyond help? What now...
He referred us to his colleague, dr W.
To be continued... (in June 2010 posts): http://roadtosanmichele.blogspot.com/2010/06/dr-w-was-very-very-kind-and-is-great.html
No comments:
Post a Comment