Symptoms

[AmandaP]

What sort of symptoms should I be looking for that my 3 month old might have urinary or bowel issues? Her bump is located directly above her bum and the urologist said that it's pretty low and unless something goes wrong with the surgery then she might be ok. But when she has a BM she has to push a little hard to get it out. Currently I'm breastfeeding so does it mean that it's going to be harder when she gets older?

Also, they talked about weakness in her leg and I personally don't notice it. It is possible to have weakness or numbness and be able to walk or will she require a brace? And does it get worse with time or is it as bad as it gets right now?

Sorry for all the questions, like I said I don't have a doctor, pediatrician, or clinic for this. In fact there isn't anyone else with this condition in my province so I'm kind of lost.

[sbmama]

My daughter didn't have problems peeing until after her surgery. A sign of urinary problems can be UTIs. It was pretty clear right after her surgery that she couldn't pee fully, but the urologist wasn't sure if it would be permanent or not. A year later I'm still cathing her.

My daughter also didn't have bowel problems until she started solids. She's breastfed and breastmilk isn't binding and is really easy to digest. My daughter just stopped pooping soon after starting solids, and now she can't poop without help even when taking laxatives.

As far as walking, my daughter just started walking recently. Right now she doesn't have any kind of braces. She doesn't have weakness in either leg that we know of, but she does get tired really quickly when walking. Since you child hasn't had their surgery yet, it's hard to say if it will get worse or not. Things can change after the dethering and problems can develop down the road if there is rethering.

It's all very overwhelming at first but hang in there! :)

[LisaJoy]

They really ought to do a urodynamic study before and after the surgery, so that they have a baseline. This will tell if she has neurogenic bladder. (At least, I think urodynamics can be done on infants -- seems like others on here have reported having it done). Has she seen a pediatric urologist?

I'm not sure about your bowel question -- from what most moms on here report, it seems like bowel problems in infancy show up as either constipation or a constant leaking of stool. If she is straining, that might be a sign of constipation, especially since she is breast-fed, since breast-fed babies don't generally get constipated.

Yes, it is possible to walk with weakness or numbness in the foot and ankle. She might need a brace to do this -- the brace facilitates walking, so walking and wearing a brace are not the opposite of each other. My right foot is completely numb and the ankle is unstable; I have wasting of the muscles all the way up to the knee. I wear an AFO (brace below the knee) and manage just fine; I use one crutch if I'm walking around anywhere other than my house or around my office, mainly because it helps me avoid fatigue.

[ainemc]

Constipation is really common with people who have sb. My daughter never had a problem with her bowels until a couple of weeks ago when she started getting constipated and we are now getting some medication for it, (shes 4 1/2 months.)
Do you catheterize your daughter or has she had tests done to show she's emptying her bladder? If her tummy feels hard she may be retaining urine, look out for cloudy, smelly pee as well as this could indicate an infection.
I think it is possible to have weakness or numbness and still be able to walk. I was told that Caitlin's leg movement is excellent but she might still have some weakness - they won't be able to know for sure until she is trying to stand. Splints will be used for Caitlin if she has trouble bearing weight on her legs.
I don't think it will get worse - the nerves that are damaged don't progressively get worse, the only way it could get worse is if the surgeon damages the nerves further during surgery, but that's unlikely to happen.
Feel free to ask any questions, I usually have new questions to ask every week!

[Kari]

My son didn't have issues with constipation until he was about 15 months old and I stopped breastfeeding. Even when he was eating solids and still getting breastmilk he was doing well, but as soon as I stopped, he was constipated.

[kidsrustx]

My son had issues with constipation soon after birth. He was exclusively breastfed, but I would have to use a Q-tip with vaseline to stimulate a BM. But your answer on bowel problems is that every SB case is different. It is a good thing that your baby's lipomyelomengocele is low, because usually that means they have fewer problems.

My son wasn't diagnosed until he was 12, so they really didn't watch for leg weakness. Maybe he had it and it just wasn't noticed? He has always run just a little slower than most of his friends, but his friends are all very athletic. He met all his milestones on time or early - sitting around 6 months, walking at 10 months, etc. So it's hard to say, But I know my son's athleticism helps him to adjust easily. With his brace on, you can't tell he has a limp. So, maybe all those years, he compensated for his weakness as he does now? Or maybe he really had no weakness until just before he was diagnosed? I don't know.

My son has a very weak left leg, but he is able to walk on it without his brace. But when he does walk on it without his brace, he has a pretty severe limp and his ankle will swell.

[janjanwhit]

My son leaked BM constantly when he was breastfed. Now he does a poo nugget every half hour or so. His urine usually just leaks out and only comes as a stream when he is upset.

[lrllnd1]

Hi Amanda,

I noticed you Live in PEI, I live in NB and have a daughter with Spina Bifida. We take our daughter to the IWK Spna Bifida Clinic in Halifax Nova Scotia. I can give you the contact name and number for them if you would like to see about taking your daughter there.

Lori

[AmandaP]

We go to the Clinic in Halifax already. Is your daughters Dr Dr. Walling? I think that he is amazing!! We go back down in about a week so that Emmy can have her untethering done. It's so nice to finally find someone who goes to the same hospital as us!

[Gymp]

I have numbness in parts of my legs and feet and can walk unassisted,for long jaunts I use a cane
.

Gymp

[lrllnd1]

My daughter sees Dr Waling and Dr McNealy they are both great. When you go to clinic it is one of those two Doctors they are the only two Pediatric Neurosurgeons at the IWK( I think) My daughter has seen Dr Howard and Dr Hyndeman for Othropedic Surgeons. She also sees Urologist there so far it has been Dr Mc Cellan and Dr Anderson. The nurses are great there who work at the clinic. I am always calling them asking them questions and no question is too small for them to answer.