The Spina Bifida Clinic

Alex had his big day at the Spina Bifida clinic this past Thursday. It was very informative to say the least. Everyone was so nice and organized--- and made Alex feel very comfortable. He is 38 inches tall and still around 32 pounds. We saw many different medical professionals but I am going to focus on just three--- the Medical Director of Physical Medicine and Rehabilitation, the Urologist, and the Neuro-Surgeon.

First we saw the MD of Physical Medicine. She was very friendly and encouraging. She diagnosed his SB as Lumbar 4-5 level myelomeningocele. This describes the level the lesion is at on his spine. Alex's happens to be near his tailbone. Anyway, she is pretty confident he is going to walk---- unassisted remains to be seen. She has prescribed AFOs (ankle foot orthosis) which are braces that will support his legs so that he can walk better. Alex is also going to be wearing a knee immobilizer at bedtime on his left knee to try and straighten the leg out. Alex is going to be getting Physical Therapy (PT) as soon as it is lined up and will be evaluated for Occupational Therapy (OT) . She explained how Alex would start out with a walker and AFOs and hopefully move on from there to fore-arm crutches and finally no crutches! Of course there are no guarantees, but her optimism was very inspiring! Only downside to our meeting was when I learned that she didn't see any reason to refer Alex to an Orthopaedist for his dislocated hip. I wasn't satisfied with that so I have emailed her for clarification.

The Urologist had me on information overload but gave me lots of handouts to read at home. Basically she said keeping an eye on Alex's kidneys was the most important thing to do in regards to his SB. His Ultra-sound and x-rays show that Alex's left kidney is smaller than his right. He has a neurogenic bladder which makes emptying his bladder difficult which can lead to kidney problems. I will be learning to catheterize Alex very soon which will hopefully make him continent. In many situations cathing alone does not solve the problem but without a case history the Urologist does not want to jump into doing any surgeries prematurely. I agree. She has also put him on a low dose antibiotic for his grade one in severity reflux. Hopefully the cathing will take the pressure of his full bladder and take care of the little bit of reflux he has. I asked her about the ACE procedure for bowel continence, but she wants to hold off until she can reevaluate Alex in six months. By then we should have more answers. So until then we are going to do antibiotics and catheterization. The main thing we need to keep in mind here is whether we just do the bare minimum to keep him healthy or if we go down the path of doing whatever is necessary to make him urinary and fecal continent. Surgery will most likely be required to make one or both happen-- something that should not be taken lightly. Above all, I think that Alex would like to be able to achieve these two milestones to help with self confidence and social independence. I think in Alex's case, the benefits associated with these kinds of surgeries far outweigh the risks.

Lastly, we saw the neuro surgeon who said that Alex does not have hydrocephalus. Yes, his ventricles are enlarged but he in no way shape or form as water on the brain. Praise the Lord. However, he does have a tethered spine which is not clear when it happened. Alex shows no regression from this tethered spine. In fact he is thriving and well on his way to being ambulatory. Yet, the neurosurgeon would like to operate. I asked her some tough questions.

"What are the benefits?" It may improve his mobility.
"Anything else?" No, not really.
"What are the risks?" He can get hydrocephalus resulting in needing a shunt that very likely will need one or two revisions in his childhood. He can also become non-ambulatory after the surgery.
"If this was your son, would you you fix it?" She said yes.

As of right now, we are leaning toward not fixing the tethered cord unless it begins to cause problems. It doesn't appear to be, so why fix something that isn't broke?