Bladder Tests?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Bladder Tests?

Postby JenandLuli » Thu Jul 30, 2009 11:43 am

Hey Guys! Sorry I've been away... I was reading here about surgery and stuff and it became overwhelming and made me sad so I had to step back for a bit. :cry:

My question - What test is done to see if a child feels the urge to pee? I want to make sure the drs are ordering the right test.

My dd's NS wants her to have a bladder test done - and she had a urodynamic test done about 1.5 years ago - but that consisted of filling her bladder only... they did not watch her empty. Is that the right test? My dd has never had a bladder infection (something they ask all the time) and her incidents of accidents has increased. But her accidents are that she tinkles a bit and then runs to the bathroom to finish going. Which makes me think she doesn't know when she has to go until she starts.

Is this a common symptom of SM???

Also, her pain ebbs and flows... some days she complains about legs and lower back pain (she points to her lower syrinx) and some days she complains about shoulder/neck pain (pointing to her upper syrinx) And some days no complaints at all.

Thanks for anyones help!!!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Bladder Tests?

Postby GrimeyGal » Thu Jul 30, 2009 10:18 pm

My son had standard urodynamics and videourodynamics done the same day. The videourodynamics allow them to watch if the bladder sphincter muscle opens properly and if there is any back flow into the kidneys. The standard test measures pressure, flow volume, fill capacity, residual volume and who knows what else.

I don't know if his issues are caused by his syrinx or his tethered cord surgery but bladder issues are listed as a symptom of syringomyelia.

Good luck to your daughter,
Patty
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Re: Bladder Tests?

Postby Lipper5 » Fri Jul 31, 2009 6:37 pm

My Son is 3 years old. Has been potty trained for some time now. He just recently started having accidents. He can urinate 3 to 4 times prior to bed (in a one hour span) and wake up completely saturated. He has been having small accidents during the day as well. He will urinate a bit in his pants and then go to finish in the bathroom.
The urinating several times in an hour to going to urinate 5-6 plus times and nothing comes out maybe a few dribbles and then he really has to push like a bowel movement to get it to start has been happening for a couple of months now. We saw the Urologist and they said he was so backed up with bowel that we needed to clear him out and he would be fine. First off he never had a problem going #2. he would go everyday to every other day. But they said he was backed up so bad that this happened over months time. They think he would go and not get it all out and then little by little it would just get worse. I am now concerned with the accidents. I dont know what to do. Maybe it is a stage. I really dont know if it has to do with his syrinx. He had a scan in June but no change. Didnt get smaller and didnt get bigger. But they could not say if his syrinx was the cause of his bladder issues.
I made a call to them today just to ask and am waiting to hear back...
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Re: Bladder Tests?

Postby jupes » Mon Aug 03, 2009 11:17 am

Hi Jen! Sorry you are having a hard time! (((HUGS))) I too have been staying away from here and trying to focus on other positive things-this whole issue can be so overwhelming and depressing :cry: !


Like mentioned in previous posts, bladder issues are listed in SM symptoms. My 13 yr old never had problems and potty trained by age 3yrs old. Past 6months she is having some bladder accidents and seems to be less aware of when she has to urinate. This concerns me and I have mentioned it to the doctor. Has not had any urodynamic testing done yet.
I hear adults complain how unpleasant these test are. How did your kids handle this and what did the urologist do to make your child more comfortable ect?

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Bladder Tests?

Postby JenandLuli » Tue Aug 04, 2009 12:59 am

Thanks Julie!
When Luli had the test before she was not potty trained yet and they only looked at how her bladder filled, not emptied... so I was concerned that this test might not be the right one... though I read that they are "supposed" to look at how it empties so I'll be talking to the uro about that.
Luli did fine with the test. I gave her a sucker to keep her busy while the test was going on. The nurse was sweet and put the cath in quickly... Luli did mind until it was toward the end and she started to fuss.
I'm not sure how well she will do now that she knows more about what is happening around her. We have it scheduled for next month.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Bladder Tests?

Postby CamrynsMom » Mon Dec 07, 2009 11:42 pm

My daughter's ONLY symptom at the time of her diagnosis was incontinence. Her urologist had tried every medication, she'd had the urodynamics testing (which did show that her bladder is small anyway, holding 75-90 cc's rather than 350 avg). His nurse practitioner asked for us to do the mri as "one last thing". Glad she did. Cami is 10 years old and has never been in control of her bladder. It has worsened through the years which we now understand to be caused by several syrinx's throughout her spinal cord. Since having her dx of CM, SM & TSC, I now believe several things she's complained of through the years are actually symptoms. The stiff neck every morning (which we stupidly thought were caused by improper sleep positions or would be remedied when we replaced both her pillows & mattress), upper back pain, numbness in her legs & feet, uncontrollable eye movements & a "drop attack" at school while carrying her lunch tray.

I worry about her upcoming TC surgery as I keep reading that the collapse of the syrinx's will usually only stop the progression of symptoms, not reverse them. I certainly don't want them to worsen, but I'm hopeful that a surgery of this magnitude will improve them.
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Re: Bladder Tests?

Postby Janice » Wed Dec 09, 2009 2:07 pm

Hi Cami's Mom,

I sent you a PM. I'd like to include, knowing now of her bladder issues and lower body symptoms, that she could very well have relief w/TC surgery. These are symptoms I spoke of, as being related to TCS. Please let us know the outcome of her surgery, especially if the bladder and lower body symptoms are relieved.

There is always a possibility of symptoms remaining the same. It really depends on the amount of nerve damage (if any) that's been done and the length of time. All we truly can do is pray she achieves the greatest outcome, and symptom relief, from surgery. There's absolutely no way of knowing until after surgery.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Bladder Tests?

Postby CamrynsMom » Sun Jan 17, 2010 8:25 pm

Hi Janice~

Cami is doing remarkedly well. She came home from Riley 3 days post surgery and took 3 pain pills total. Her incision is healed nicely and we follow up with her NS, Dr. Smith on the 26th.
Doc said the tether was pulled so tight it dissappeared & she would have done more harm than good in going after it. Hence, nothing for pathology but don't think it was needed.

She had feeling in her bladder immediately which meant she also felt the muscle spasms she's always had. Not sure if what she felt was actual pain but awareness. Anyway, they gave us Valium for it, just in case. She hasn't had a spasm in about 2 wks so that's good. She is still chronically constipated & I wish someone could tell me exactly why that is. We give her Miralax every night. If we miss more than a day we get a call from teacher that she's in the bathroom crying. She's been impacted several times and I hope this isn't for life. She's passed enormous BM's that no one (especially a child of 10) should ever have to pass. I'm going to ask Doc about that 'cuz I just don't understand how that happens.

She has been coming home from school "dry" approximately 4 out of 5 days which is outstanding! We are in the process of switching her over to panties with pads, from pull-ups, which are ridiculously expensive for a girl her size. All in all, I'd say the surgery was a success. We'll know more in the late spring when she has a follow-up MRI and see if her brain herniation has reduced. That's what we're hoping for. I'm sorry she has this illness but am grateful it wasn't worse than it was. I am also extraordinarily thankful I found Kaylee & Keegan's mom & this website. I don't know what Cami's future holds but with each new case brought to light, there is a greater chance for awareness & cure.

I just wanted to mention this. I reconnected with a childhood friend on Facebook who had 2 decompression surgeries in 2007. She was amazed I'd heard of ACM & SM and it was she who sent me to this & other sites for info. I think we all just need to keep talking about it to create more awareness. Thanks everyone for everything.

~Tina.
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Re: Bladder Tests?

Postby CamrynsMom » Sun Jan 17, 2010 8:33 pm

Oh! I forgot to mention this. Dr. Smith referred me to Dr. Brad Horn here in Indy to look me over. She thought my numbness & tingling in my arms & hands and pain in my neck & right shoulder / upper back might be realted to ACM/SM. That would be crazy if I've had this, too & didn't know it.
~CamrynsMom, Tina.
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Re: Bladder Tests?

Postby Janice » Sun Jan 17, 2010 9:25 pm

Hi Tina,

I'm so very happy to hear that Cami is doing so well. I agree that you should speak w/her doc about her continuing constipation. I was constipated from a child up well into my 40's, when I was dx'd w/SM and began taking Lyrica. For the first time, I was able to go without assistance from a laxative or stool softner.

I've been seeing this commercial on Activa a lot lately. Have you thought about giving her this yogurt on a regular basis? It's supposed to keep her regular. I've thought about trying it myself.

Most important, I'm thrilled to hear that her bladder issues have significantly improved. I'm sure she'll be happy wearing panties w/pads over pull ups.

I'm on facebook if you'd like to connect there. I can be found by email address: janice_92129@yahoo.com

Take care, you're both still in my thoughts and prayers. (((((Hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Bladder Tests?

Postby lttutrow » Sun Jan 17, 2010 10:53 pm

Me too, I'm very glad to have met another Riley/Dr. Smith family, and am so very glad that she is doing so much better!!! I'm also on facebook, and I can be found by my email, lttutrow@prodigy.net .
Lori
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