Advice for my 8 month old with Spina Bifida

[michellekorb]

Hello - I'm hoping that this is the correct "forum" to post this kind of ask. I will try to keep this quick and to the point .

My 8 month old was born with a tethered spine and mylomeningocele. He had surgery when he was 6 days old to untether his spine and close his defect. He has full motor skills and is advancing appropriately for his age. His past ultrasounds and CMG tests have come back great. We do not cath him at home and he does not have a shunt.

His last CMG test showed that he had high bladder pressure which was concerning. His kidney ultrasound looked great, he is emptying his bladder on his own and there is no evidence of urinary reflux. That being said - the urologist recommended (did not prescribe) that we start him on ditropan and cathing him 4x day. I don't exactly care for the way information is delivered to us by this doctor (good or bad info) so I will be searching for a new urolgist. We also just got this news two days ago and we are still digesting this in order to make the right decision.

This seems like overkill to me if there is no evidence of anything functioning incorrectly. I would hate to start him on meds permanently and start cathing him permanently if it truly isn't necessary. Perhaps the risk of infections or damage to the kidneys is inevitable or the damage could be detrimental and this precaution is necessary. If so, I will do it no problem.

Any advice here? Like I said we are still gathering all of our questions since we didn't feel like we got enough info during our visit.

Please know that I realize my son's case is very minor compared to many others and I appreciate how lucky we are to be blessed with the outcome we are.

I am grateful for any advice, tips, kind words, reassurance, etc.

Thank you
Michelle

[rdf]

I'm sorry for your troubles Michelle. Hopefully a SCI Nurse or Wise will answer soon. Hang in there.

[SCI-Nurse]

Hi,
I have little to no experience with infants with these problems, but here are my ideas.

Intially, I would wonder why his CMG showed a high pressure bladder when he is voiding on his own. It sounds like he may not be fully emptying, which is causing urinary retention and cause infections and other problems. This could be why the cathing and ditropan as that will facilitate better emptying. It is good there is no reflux.

My suggestion is to ask your urologist to explain the findings better (is he retaining? what is the rationale?) These are basic questions and you deserve an answer that makes sense and you can understand.

If you do not communicate well with this doctor, you should definitely get another opinion and another doctor. You should search high pressure bladder in children to get more information before speaking with the doctor also.

AAD

[lynnifer]

If you cath after he empties and find that there's more than 15cc's (correct me if I'm wrong someone!) in his bladder, then alternative methods need to be looked at.

[eschalee]

I read a lot of articles when I was pregnant by Dr. Bauer from Boston Children's Hospital and then drove great lengths to visit him for a second opinion when I had a similar experience for my then 6 month old. Worth every penny. He is certainly one of the best.

[Megha]

I have spina bifida and have been cathing since I was 7-8 years old. I was started on cathing because I was getting extremely bad urine infections and even needed hospitalizations.

Is your baby having any urinary infection? If not, and he is voiding urine on his own, then I don't think he requires cathing just yet. I think you must get a second opinion on this.

I might be wrong, but there is no harm in asking another doctor.

By the way, Congratulations on the entry of the little angel in your family

[Donno]

Note that this thread is almost 2 years old.