Dean’s Next Step

Yesterday Dean had a big doctor’s appointment.  I went in prepared with a long list of questions and ideas about what was going to take place in this appointment.  Of course none of my ideas were correct and I left feeling pretty out of control.  I absolutely hate that feeling!  I hate not being in control and not knowing what is best for my own child.  Yet it is a feeling I need to get use to because I feel it all too often after appointments.

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It took over 2 months to get in with this doctor who we have already seen, he is a pediatric physiatrist.  Our first appointment was almost a year ago now.  Pediatric physiatrists are physicians who specialize in the rehabilitation care and medical management of children with brain injuries, spinal cord injuries, neuromuscular disorders, and an array of musculoskeletal conditions.  Dean’s stroke is considered a brain injury and at this point I feel like he can help us more than our neurologist.  During our first appointment we discussed options to help with his spasticity as well as therapy options.  Because of the stroke Dean has trouble controlling the muscles in his fingers which leave them contracted.  He also has trouble supinating his wrist and using his shoulder.  We have always noticed there is much less spasticity in his leg than arm.  Which is a good thing!  From day one we have been told there are 2 options for Dean to help with his spasticity, Botox and Baclofen.  We have said no to both for the past 18 months.

My thoughts in the beginning were you want me to inject Botulinum toxin in my baby? Botox is a nerve impulse ”blocker.” It attaches to nerve endings and prevents the release of chemical transmitters, which activate muscles. These chemicals carry the ”message” from the brain that tells a muscle to contract.  If the message is blocked, the muscle doesn’t spasm.  This is the same botox that people put in there face.  But in people with spacisity they inject small amounts in the specific muscle groups.  It took a while for me to come to terms with it but ultimately Ryan and decided we thought it would be beneficial for Dean.  We went in expecting the doctor to agree and even give him the first dose while we were there.  Well, we were wrong.  He did not agree and felt the Botox was too much upkeep, having to reinject every 4 months or so and the pain from the injects was not benfefical.

So he decided to start Dean on Baclofen.  Baclofen is a medicine that treats muscle spasms and tight muscles. It is oral so it affects all the muscles not just the affected ones, which worries me.  I’m worried about regression in his walking and other skills because his muscles are loose.  We also need to give the medicine twice a day because it wears off.  And of course it has some nasty side effects which terrify me.  To say I am not excited about it is an understatement.  I am optimistic though.  We are starting of slow and increasing the dose each week.  Ryan and I will be watching him close for side effects.  Of course there is a glitch with insurance and we are going through the pre-approval process.  Hopefully I will have a positive update in a few weeks!

 

 

 

4 thoughts on “Dean’s Next Step

  1. I’m just ‘behind’ you in that my RH boy is nearly 20mo, just starting to take his first steps. Also more affected in hand. Neither of these have been mentioned by our doctors yet, but i’m fully versed. I agree with you re: Botox but I also felt that weighing them up, the side affects are possibly less than the meds? Argh, what a decision. Have you looked into e-stim? I read it can be similar effects but obviously completely non invasive?

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  2. You have the right doc to help Dean now. Ped physiatrist is a specialty not often heard but a very important doc for Deans improvement. God bless you all. I still say that Dean will continue to improve. His body is still working on improving and he has a great curiosity that will help him.

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