Friday, January 14, 2011

On a Curve

Brayden went to his orthopedist. We have not been to this doctor for a while. She prescribed him the AFOs and those have been great.

Brayden was there today for his spine and hips. Brayden has always leaned to his left, partially because of his disposition, seizures and comfort. Since the fall we have started to notice his spine was curving too much. We position him, prop him, etc. to help but without much progress.

His sternum is protruding too much and starting to cause pressure sores. Because of his weight loss, his hip bones are sticking out the back (it also does not help that Brayden had no bottom to start with)

Then Brayden's hips/legs have been extremely tight for the past several weeks.

We went to the orthopedist ready with questions and a note from Brayden's physical therapist explaining the concerns. Talked with the doctor and she ordered x-rays, which thankfully are done right in the office.
Once the x-rays were ready, we reviewed them and could clearly see the curve. The orthopedist talked about it but not enough to my satisfaction. The solution the Dr offered was a better wheelchair with more support and wrote prescription for a new wheelchair. However, Brayden does NOT spend his days in the wheelchair, nor do I want him to. He still leans in bed, when held or any other time.
As for his legs, the Dr. immediately (and rather insistently) recommended Botox. Botox is often used for children with cerebral palsy. However, I am not convinced this is an option for Brayden. The tightness in his legs has only been happening for a couple of months and we can relax them with effort, although the legs do not stay relaxed. Botox is temporary, lasting for 3-6 months, and would possibly need to be done with growth spurts or additional tightness. Also, in order to get Botox the children must be sedated each time.
This orthopedist is well known and well respected. However, she is an orthopedist...if things are broken then it is to be fixed...very black and white...problem to a solution, and Brayden is not a black and white case...things are very gray.
Needless to say, I left the appointment feeling frustrated. I called around to some friends with special needs kiddos to find out more and spoke to Brayden's pediatrician, who helped us set up an appointment with another orthopedist, this time from Children's, whom we will see in March (long waiting list).
Brayden has enough things to deal in a day, adding spine and leg problems is something we are trying to avoid.


Wherever HE Leads We'll Go said...

UGH! I do have one question about the spine. Is a TLSO an option? It is yet another brace, but it could be worn no matter where Brayden is. Then he would not be limited to his wheelchair. Just a thought.

As for Botox, we are going to be doing that soon. No fun, all the way around!

Mo said...

Just some thoughts on Botox... you may have read but we did Botox last month with Oia, right calf, two shots. Saw results immediately. *Almost* flat foot. That lasted only 3 weeks and the optimal time for a good round is up to a few months. Our doc does not sedate. Honestly, the procedure is no more lengthy than getting a vaccine. Unless Brayden is getting several shots at several sites, then he should be fine without it. It's stings, Oia cried, but we're talking a minute or so and done. I have mixed emotions about Botox. Considering it's not FDA approved, I'm really hesitant to go forward with another round. A good stretch is nice but it's a temporary fix.... surgery is still highly likely in our case so I'd rather avoid the gray area of Botox altogether. I dunno... go with your gut.

I hope something relatively easy can be done for his poor back. I hope it's not too discomforting for him at this time. You'll make all the right choices, you always do.

littleharves said...

find out about scoliosis, see someone who specialises in that in scoliosis and children. get braydons vitamin d and calcium levels checked. harvey ended up with progressive scoliosis which affected his chest cavity. i have heard wonderful things about botox helping with spasticity . it can be the tightening of muscles which cause the scoliosis and using botox can both bring great relief and prevent further curvature. side sleeping to help compress the curve can also help slow it down but talk to your physical therapist about this. sorry if this turns out to be unwanted information but it turned into a huge deal for harvey xxx

Shannon said...

I am glad the pediatrician was able to direct you to another orthopedist. I hope you have a better rapport with this doctor. Finding someone who can meet you in the midst of the gray is a must.