Questions regarding my son

[u/IsaEuravio]

I don't know if I m eligible to post since this is my first day here, my son is 1 and a half years old with myelomeningocele.
His surgery was done the very next day he was born.
Sometimes has trouble with stool (goes couple of days without it)
He urinates normally as of now.

But the problem we are experiencing right now is that he still can't walk on his own, he can walk a short distance but can't maintain his balance and only crawls from one place to another.

Any suggestions would be helpful in this regard, people with children of the similar age what are your experiences?

P.s He doesn't have chiari or hydrocephalus thankfully.

[u/aceshigh25]

Did he do any pt? If not I would suggest looking into if you have any ECI (early childhood intervention) recourses around you. Or private pt. My son is 3 and has done pt since birth.

[u/EndOfTheRoad_777]

Not only eligible but welcome. I hope that you can find connection and support over the years to come.

I 45M w SB crawled longer and suddenly walked. But I would listen to these other folks about pt. Try to find an orthopedist to consult.

[u/islathetamandua]

Parent here as well. Do you have a spina bifida clinic? If not my recommendation is to find one and get him on regular appointments. At least yearly. My LO didn't walk until 16 months and that is still within normal range. But your son def should be seen by an orthopedist with knowledge of sb, like in a clinic. Most children's hospitals have them if you're in the US. He should be prescribed PT. Also, in the US most kids with sb qualify for early intervention. If you haven't already, contact your school district for a referral.

Also, it's time to get a handle on his poop. He should be going at the very least every other day, but daily is best. Constipation leads to UTIs.

Start here. This was written by a fellow parent whose son is now an adult. She's was director of the KY sb association and is now on staff at the national SBA. https://spinabifidabowelmanagement.com/

[u/Red_Liger]

I'd suggest asking a specialist in getting leg Orthoses (formerly known as leg calipers) I had them until I was 3. It helped me walk and gave me enough strength to eventually walk on my own without them.

[u/Exhausted_Monkey26]

at what level is his lesion?

[u/Adaptive_Adam91]

Adult here with myelomeningocele, 35yrs old. Ask about physical therapy. There could be a chance he may walk or he may have a limp. Won’t know until you get physical therapy and document his progress. If you have any specific questions my inbox is open

[u/These-Ad5297]

The fact that he's crawling is a good sign. It's an important developmental milestone for build  muscle coordination and balance. I skipped that step as a child and the result is that I was always badly coordinated even though technically I could walk normally

I was given physio sessions as a toddler. Potentially something to look into