Thursday, March 23, 2006

Neurologist

Well, since Anna's 15 month check-up, we've been going to a variety of doctors and physical therapists to see what might be wrong with our little girl. As most of you know, she has a pronounced gross motor delay, meaning she doesn't stand, bear weight on her legs, pull up or walk.

It's been a harrowing experience listening to all these serious medical personages telling us, with serious expressions, that there may some kind of long-term problem with Anna's development. It all culminated yesterday, finally, when we took her to see a pediatric neurologist.

I cannot even TELL you how much I was dreading this appointment, but it turns out, it was the best one! Dr. Grabert let me hold Anna the whole time, and just observed her to check her reflexes and motor skills. Then he said that his diagnosis was something called cerebral hypotonia, or dissociation of maturation.

What does that mean, you're wondering!? It means that she has a severe gross motor delay but no other major delays. It means she has low muscle tone, especially on her lower extremities and is very flexible. It means that when you hold her up, she "sits on air" with her legs out in front of her. It means she's not walking yet and doesn't bear weight on her legs or pull up to stand. It means that in all liklihood, she's going to be JUST FINE.

The condition is known to be totally benign, and while she'll probably always be a little behind her peers in her gross motor development, she'll eventually start walking, he said probably in the next few months. Her walking may look funny at first, too, very stiff-legged, but eventually she'll establish a normal pattern. He did say that his diagnosis of this has been wrong two or three times and that if she's not walking by 20 months, we need to bring her back in for further tests. But he was really confident that this was the problem and that we'd never have to see him again.

WHAT A RELIEF!!! He even said that while physical therapy, which she started earlier this month, will help her achieve milestones more quickly, it's not something that is totally necessary. We're going to keep it up, though, becuase now we've just found this therapist who Anna really likes.

It's funny, but another one of the characteristics of the syndrome is the babies being easily frustrated, just starting the cry like mad all at once in the middle of nothing... and that is SO Anna, she does that about four times a day! It is really hugely gratifying to know that, while there is definitely something unique going on with my girl, it's not something BAD, she'll have a normal life, with no long-term negative impact. That was my biggest fear. So now, all we have to do is wait and watch as Anna figures out walking. The average age for walking with this diagnosis is 18 months, and she's 16 and a half now. Plenty of time to get things moving, baby girl.

2 comments:

Anonymous said...

so glad to hear this! can't wait to see anna this weekend.

Anonymous said...

My son was diagnosed with same thing. One of the physical therapists gave me some special sensory integration work to do with him and it has significantly reduced the temper tantrums just in the last week. I would be glad to share info with you.

lanowack@aol.com