Possible spina bifida occulta

[belle&beast]

I wrote this last year at this time:

My DD will be 6 in July and has had trouble with bladder control for about 3 years now. It is a long story, but she is having bowel and bladder trouble now after having about 6 great months. The pediatric urology nurse practitioner recommended a urodynamics study. She had a VCUG which was very traumatic and I know I am going to need to be honest (without giving her too much information) with her about what this will entail. Any information is greatly appreciated!
We are having problems again and would appreciate any advice. I posted more details in a new post.

 

[MarieS]

My DS had a VCUG and MRI of his spine last fall. He has developed a chronic bladder problem following a shunt malfunction. I thought the VCUG was a urodynamic study? Did the RN give you any idea about how the VCUG differs from a urodynamic study?
Hope your DD's situation improves soon.

 

[Ali]

I had this done last month. It was a breeze. The only issue I had was going up on the chair high in the air so the doctor and nurse could be at eye level with the "area". Simple insertion of 2 smalll sensors to see what contractions the bladder is doing, bladder was filled with water through a catheter until I felt "like I would have to pull off the road to pee" to see the capacity, then I was lowered to the ground, nurse removed catheter asked me to cough a few times to check for leakage, then she put a pan under me and told me to empty my bladder and she left the room. I have bladder issues related to retention so i couldn't go, but the nurse said many people have a problem with going in that situation and she used a catheter to empty my bladder then.

No pain, no issue. The next visit I had the cytoscopy with the tiny camera inserted by the doctor to see if there were any functional problems with my bladder. It was cold, and they ran cold water into my bladder to help stretch it, but it was simply uncomfortable for the cold. No pain, just an embarrassing position to be up in the air with people looking at you.

She shoudl not feel any pain, it is very quick, AND gives good information. Good luck

 

[belle&beast]

Thanks for the information, Ali. We had such a bad time 3 years ago at her VCUG that I am thinking that I am not going to tell her anything and just play dumb. We are going to a children's hospital and the nurse promised me that we sill not have a bad experience there. Her study is scheduled for June 19.

She is also going to see a GI specialist to help with her chronic constipation. We are hoping that the constipation is the main source of the bladder issues, but there is a chance that she has spina bifida occulta and she will have an MRI on the 12th. From what my colleague, a physical therapist, has told me, her symptoms are definitely pointing to the spina bifida. This is really scary to me, but we really need some answers so we can help her.

 

[belle&beast]

I am reviving this thread because we are in a bad spot again. My DD did not allow them to get anywhere near her with the catheter for the urodynamic study last year, so we opted not to complete the study. She did complete biofeedback exercises and did wonderfully with those. Her MRI was normal and the GI specialist helped with her constipation.

She has been accident free for at least 6 months, and now we are back where we were last year at this time-daily bowel and bladder accidents. She has recently grown quite a bit, so if she has a tethered spinal cord, it could be pulling more and affecting bowel and bladder control. I really feel like I should get another opinion about the spina bifida occulta. A friend of mine has a daughter with SBO and her initial MRI was misread and I am beginning to think that happened for us, too.

Does anyone have any suggestions about where to go? We are in northern Indiana and have been to the one children's hospital in Indiana. I know Chicago is a very viable option as are the unversity hospitals in Michigan. Any opinions or experiences? Thanks!

 

[KirstenB]

I'm sorry I don't have any info. I just couldn't read this without replying. I hope you're able to resolve her problems quickly, and she feels better soon.

 

[belle&beast]

I'm sorry I don't have any info. I just couldn't read this without replying. I hope you're able to resolve her problems quickly, and she feels better soon.

Thank you for your kind words. We are hoping for the best!

 

[momw/2princesses]

Just came across this post and wanted to respond to you. My DD, now 7, has had similar issues. She has a lipoma at the base of her spine. Her cord isn't tethered at this point, but we have to keep a watch on it. We don't have any conclusive evidence of SBO either. She has had numerous vcugs and urodynamics. The urodynamics is very similar to the vcug, but takes a bit longer because they slowly fill the bladder and then wait for it to empty to check bladder size and pressures. There is also something inserted into their bottoms to check pressures. It has gotten harder as she's gotten older because she knows exactly what it involves. It hurts, there's no way around that. Sometimes, we will give her tylenol to relax her a bit. And we have her take a uristat pill as soon as it's over to help relieve the bad feelings afterward. If she hasn't been evaluated by a neurologist and/or neurosurgeon, please consider it. Also, has she had a growth spurt recently? This can change things dramatically, increase the accidents, etc. I wish you luck with this. It's such a hard age and this doesn't help matters. I'll be happy to help you any way I can.

Mom w/2 princesses

 

[belle&beast]

Just came across this post and wanted to respond to you. My DD, now 7, has had similar issues. She has a lipoma at the base of her spine. Her cord isn't tethered at this point, but we have to keep a watch on it. We don't have any conclusive evidence of SBO either. She has had numerous vcugs and urodynamics. The urodynamics is very similar to the vcug, but takes a bit longer because they slowly fill the bladder and then wait for it to empty to check bladder size and pressures. There is also something inserted into their bottoms to check pressures. It has gotten harder as she's gotten older because she knows exactly what it involves. It hurts, there's no way around that. Sometimes, we will give her tylenol to relax her a bit. And we have her take a uristat pill as soon as it's over to help relieve the bad feelings afterward. If she hasn't been evaluated by a neurologist and/or neurosurgeon, please consider it. Also, has she had a growth spurt recently? This can change things dramatically, increase the accidents, etc. I wish you luck with this. It's such a hard age and this doesn't help matters. I'll be happy to help you any way I can.

Mom w/2 princesses

Wow, you are timely! I have been in contact via email with a neurosurgeon at the University of Chicago and he read her MRI and said it looks normal, but he wants to talk to me about occult filum terminale syndrome. I haven't been able to find a lot of information, but from what I can tell, this term is used for people that have all the symptoms of SBO without the tethered cord. What I have found are a few efficacy studies on the surgical treatment for these kids. The doctor is going to call me to discuss this syndrome, so hopefully there are other options besides spinal surgery.

My DD will be 7 next month and at 3 she had a VCUG- it was a horrible experience and she totally refused last year at this time to complete the urodynamic study. The children's hospital where we were does not complete the studied with sedation, however the neurosurgeon said their urologists can use sedation. I am hopeful that we can get in there so we can at least have the information to see why the accidents are happening.

And yes, she has had a huge growth spurt and that is when everything started again. That is really what started me to think her MRI was misread because everything seems to get worse when she grows.

Thanks so much for your response. Any more advice is appreciated!

 

[ktwheelz]

BelleandBeast,
I hope all is going well for you and your family. It sounds like it has been a difficult time for everyone involved.
You mentioned that your DD has had a tough time with the procedures she has had so far. It might be worth asking your hospital if they employ child life specialists. These professionals help children and families cope with difficult medical experiences. As part of their job, child life specialists teach children about upcoming procedures and can be present during a procedure to support the child and family. Below is a link to some more information, if you are interested.
http://www.childlife.org/The Child Life Profession/HowaChildLifeSpecialistCanHelpYou.cfm
Good luck with everything you are facing!

Sending Pixie Dust your way,
ktwheelz

 

[belle&beast]

BelleandBeast,
I hope all is going well for you and your family. It sounds like it has been a difficult time for everyone involved.
You mentioned that your DD has had a tough time with the procedures she has had so far. It might be worth asking your hospital if they employ child life specialists. These professionals help children and families cope with difficult medical experiences. As part of their job, child life specialists teach children about upcoming procedures and can be present during a procedure to support the child and family. Below is a link to some more information, if you are interested.
http://www.childlife.org/The Child Life Profession/HowaChildLifeSpecialistCanHelpYou.cfm
Good luck with everything you are facing!

Sending Pixie Dust your way,
ktwheelz

Thank you for this information. I spoke with our pediatrician and she did not have more information on the syndrome, but she is looking into it for me. She also encouraged me to talk with our current urologist to get medical records and to find out why the testing cannot be done under sedation there. I will also ask about the Child Life Specialist, I am pretty sure they have them at the chidren's hospital. In fact, when I was a student completing observations, I am pretty sure I saw them at the hospital, the website totally jogged my memory! (But that was a long time ago!!! ) Thanks again!