Matthew now has a Baclofen Pump

What is it?  The Medtronic SynchroMed^® pump is a programmable, battery-powered medical device that stores and delivers a prescription medication called Lioresal^® Intrathecal (baclofen injection). It is surgically placed in the abdomen. A thin, flexible silicone tube called as catheter is inserted near the spine and connected to the pump.
Why did he need it? Matthew's brain tells him "HEY hold your legs muscles really tight and never relax!"  That's putting it in a nutshell.  When that happens, your muscles will eventually pull your femurs right out of the sockets and that's what happened to Matthew.. twice.
He had a bilateral hip surgery a few years back because his hips were coming out of the socket.  They had to break the femur, re-position it into the hip sockets and put back together with pins and plates.  They also lengthened tendons of his abductors and behind his knees.  This fixed the results of the extremely spastic muscles but not the cause.  A year later I noticed the same thing happening again.  I did some research and found the site about the Baclofen pump.  At the office visit I ASKED WOULD A BACLOFEN PUMP HELP KEEP HIS FEMURS IN THE SOCKETS. I was told face to face that NO because Matthew was Not a candidate because he had poor head control and it would make that worse.  If I could go back in time I would have Slapped that doctor upside his big head and said you are an idiot. Never just make up crap you don't know anything about.  I find out later that baclofen pump has NOTHING to do with head control. So meanwhile, Im waiting on what I was told was inevitable, the femurs to come all the way out, and that he would just have to have another surgery to fix.  We put off as long we could.
As long as he was in no pain, we would not do surgery.
Will it work for my child?
Well, 2 years later he's in pain.. even on 70 mg of oral baclofen, his hips were both out of socket.  Now he kept them pulled up and it was hard moving and changing him.  Any movements were painful because the balls joints (trochlears) were rubbing on the hip sockets.

So now we take him to another orthopedic surgeon. First question out of his mouth is  "Why doesn't he have a baclofen pump?"  I explain to him what I just explained here for you all, now that is where we are now. He wanted Matthew to get the pump first to see if it would help.  The trial to see if he was a candidate was scheduled and it was like a miracle.  HE WAS a candidate for the pump.  It even relaxed from his arms down.. He actually has BETTER head control because the baclofen is not hitting his brain first.. it's going right into the problem areas.

If you want to read about the pump please click the link above this story.  If you have any questions, email me personally ckappler@cablelynx.com

Matthew had the baclofen pump trial March 10th. It involved a CT scan to check his brain fluid levels first. CNS fluid was drained off during the procedure so baclofen could be inserted. For Matthew is was relatively painless.  Within 5 minutes, we knew he was a candidate.  We came back now on the 30th and he is sporting his new hardware now.  There will be several adjustments on the amount and times the baclofen is released to get it just right.  Right now he's on 100mg every 8 hours and he is relaxed and

I can tell a big difference in his spasticity.

Matthew's only problem has been congestion.  He doesn't want to cough so he has kept a lot of gunk in his throat.  He doesn't want to cough because when he does it hurts.  A guy I found on you tube that had the same surgery told me to put my hand on the surgical area and hold down while he coughing because that helps a LOT.  I am so thankful for people that can "speak for Matthew" that have been in his shoes. I am thankful for the advice.  I will not stand for him to suffer when there are so many out there that can offer advice on what to expect or what to do for kids like him.  I'll do what I have too and listen to whoever has advice that will keep him from being in any unnecessary pain. That's one of the reasons for this web blog. I don't want others to have to have their child suffer because they "didn't know".  Of course, these are our experience and no kid is alike, Im not a doctor either so you can take the advice or leave it. It's your kid! lol

We are suppose to go home today. I'll post any other important things we learn about the pump as we go.. Remember to email me if you have questions. There are a lot of other warnings and problems that can  occur with the surgery and the pump so make sure you read up and do your research.