The Spasticity Clinic

Wednesday morning we got ourselves out of the house bright and early to see Dr. Kwasnica at the Spasticity Clinic. Dr. Kwasnica specializes in spasticity, which is increased muscle tone often found in kids with CP. When kids have tight muscles, or they hold their body in certain positions, it can inhibit the growth and development of bones and tendons and eventually inhibit mobility of certain limbs. Sadie is young, and we don't think we have a huge spasticity problem (yet), but we also see the importance of seeing doctors like Kwasnica early on so that Sadie's progress can be tracked over time and interventions can be made quickly when needed.

I had no idea what to expect when we went into this appointment. I had had long talks with our PT, Tami, about what Dr. Kwasnica might recommend. Sometimes Botox is injected into muscles to loosen them for a period in hopes that increased coordination can result (because it's really hard to reach and grab something if your brain is telling your arm to always stay bent!!). Sometimes they recommend a drug called Baclofen (which, if you remember Sadie was on when she was little...it's the one we ODed on and ended up in the hospital). As kids get older they may insert an automatic Baclofen pump under a person's skin that administers the drug straight into the spinal cord. (scary) And having never met Dr. Kwasnica, I don't know how eager she is to intervene with medicines and procedures, so I was prepared to request as much intervention as needed before going too extreme. And I asked Tami to join us at the appointment also (as backup).

The other thing that was making me nervous was that our appointment was at the CRS clinic (remember, me talking about Child Rehabilitative Services a couple of days ago? State run, etc.?) which is famous for taking a long time. Our appointment was at 9:00am, and I was worried about getting home in time to sign on and work at 11:30!! I know some people who, when they visit CRS, they clear out their entire day.

It was NOTHING like I had anticipated. We spent more time waiting in the line to check in than anywhere else. Once we checked in, we barely were able to sit down before they called us back.

I'd like to just interrupt the story here to say that when they weighed Sadie, she was 27lbs and 8oz, which isn't gaining, but it's nice to know she isn't losing weight since we started our blenderized diet. She was also between 35 and 36 inches...long and skinny.

Then when we got into the room, I barely had time to get Sadie's diaper changed and her out of her jammies before the doctor came in. Seriously, we were done and out of there by 9:30!!

So, here's what the doctor said:

She isn't concerned about her range of motion, she could see that Sadie CAN flatten her feet, straighten her arms, get her arms above her head, and open her hands. But we explained that when she does tighten up, it's usually due to something environmental that is keeping her from being relaxed. Maybe it's pain, maybe it's wanting something she's not getting so she's mad, maybe it's being uncomfortable in her position, or even being overstimulated in her environment. The doctor was more concerned about controlling these environmental factors so as NOT to even get Sadie into that cycle where she's tight.

How do we do this???

She mentioned the ativan.  We mainly use the ativan at night to calm Sadie down so that she'll fall asleep.  But sometimes if she's very upset and agitated during the day, we'll use it then too.  We hardly ever use the recommended dosage, usually more like half the amount is good enough!

She also mentioned that she wants Sadie to have SOME tone, meaning she doesn't want her to be totally floppy, because she is learning to sit and she needs to maintain some of that control and stability to get stronger.  She also doesn't want to relax Sadie's muscles too much with medicine because of what the results of the swallow test told us on Monday...she's afraid that relaxing ALL her muscles (like by giving her baclofen) will make her aspirate more, therefore making it unsafe to eat.  And also doing that will worsen her reflux...which we finally just got under control.

So, I think she was pretty conservative in just wanting to continue with therapy and no big interventions just yet.

However, we did mention maybe fitting Sadie for hand splints.  She thought this was a good idea.  Sadie's hands are frequently in fists.  And even when they're relaxed, they're never flat open.  She can't clap.  Lately, I've been working really hard on stretching those hands out so that her tendons don't get too tight, and I think it's helping, but splints would also help with muscle memory.  She'd mainly wear them when she's sleeping, because we anticipate that she'll hate them.  And Dr. Kwasnica said that if they're making her mad and causing her to be more tight, take them off.  (I wonder if we could put them on actually AFTER she's asleep...that's dangerous territory!)

Overall it was a good, positive appointment.  I really liked Dr. Kwasnica, and of course she was smitten with Sadie (like most people are!).  She just kept laughing at her and Sadie was bringing out her personality and being super cute.  Dr. Kwasnica just kept oohing and ahhing over her hair (again, like most people do!) and when we were done, she said to Tami, "really?  You have to let her go?!  With that hair and that smile?!"  (We have one more week of PT with Tami and then we're going to start in home PT with somebody new, we're really sad.)

We go back in a couple of weeks to be fitted for hand splints.