Thursday, September 29, 2011

Better Living Through Chemistry

Well, Dylan's been on the meds for almost 2 weeks now.  After having a knock down, drag out battle with the insurance company and then his pediatrician (in which she called me up at 8:00 in the morning screaming at me), I got his meds covered.

It's been an interesting process.  It's almost like the world has been on fast forward and by giving him this medication, we hit the pause button.  He's seeing things in a new way and he's letting us know too.  While the quality of his speech hasn't changed that much, the content has changed dramatically.  He's instigating conversation so much more now, telling us about what he's noticing and what he's doing.  He's received two certificates for good behavior (we've never had one before) and even the school nurse asked me if he was on meds.   It definitely feels like we made the right decision.

Tuesday, September 20, 2011

Do Superheroes Have Sensory Processing Disorder??

A post on the SPD Blogger Website got me to thinking.  I’ve always considered Dylan a superhero.  Since he was a baby, I’ve said that his smile will change the world (one of his many super powers).    On Beth’s post, I shared with her the one time I saw a child in sensory gear I told him he looked like a superhero which got me to thinking…..

Do superheroes have Sensory Processing Disorder????

Let’s explore shall we??

Spiderman wears a skin tight costume (compression garment) from head to toe. He flings himself off buildings, swinging back and forth through the air (vestibular stimulation).  He wears his costume under his clothes and rips them off at the first sign of danger or a human in need (tactile defensiveness - tags and seams probably drive him nuts)

Superman also wears the skin tight costume (compression) and flies (vestibular) through the air with the greatest of ease. Now think about it – who other than someone with SPD would be remotely comfortable with flying without a plane or helicopter?

I think we can all agree that the majority of superheroes wear compression type costumes which give sensory input.

Batman also has a utility belt and based on the number of gadgets (fidgets anyone?) I’d say that would be a weighted belt (sensory input).

Daredevil is blind but uses all his other senses to fight crime (just more support to my special needs = super powers theory).

Flash, Wonder Woman, Punisher, Storm, Thor, all wear compression suits, use heavy objects, seek vestibular input and, in some cases, in their alter egos, have proprioproceptive issues (hello clumsy Clark Kent!)

So the next time you see a child, teen or even adult wearing compression clothing, weighted garments or other “unusual” item, please don’t stare, don’t point fingers, don’t make faces. Please DO engage us and (if the parent seems receptive) or kids. Ask them what their super powers are! Chances are you’ll be able to figure it out on your own. Dylan’s smile and laugh, his ability to see good in everyone, his uncanny ability to make himself known in a very short period of time, those are his super powers. What are yours?

Friday, September 09, 2011

Starting meds

This weekend we are going to try meds on Dylan at the recommendation of the researchers in Boston.  We are excited and terrified.  We (Marc, myself and Dylan's developmental pediatrician) have put a great deal of thought and research into the medication.  We needed something dye free (very hard to do), his doctor felt going the stimulant route was best and we all wanted something that was single dose.  We also had to be conscious of the fact that Dylan has had seizures in the past so couldn't do something that may lower his seizure threshold (some drugs that are used off label for ADHD can lower the seizure threshold like W3llbutrin). 

Tomorrow morning, after giving him a good hearty breakfast, we will open up a capsule of Metadate, sprinkle it in some pudding, give it to Dylan and wait and pray.  I"m excited at the possibility of him being able to focus on something - anything.  I'm terrified that it would trigger a seizure (though very unlikely, I'm still worried) and I'm even more terrified that it will take away his amazing personality.  That's one side effect we are not willing to live with.  Tics are another possibility but even though they can be unnerving, they will go away as the drug leaves his body.

We saw his behavioral therapist who basically told us that he hasn't seen much good done by the drug class we're trying and that stimulants are not a good idea for him.  So, essentially, he's going against some of the top researchers and a doctor at the #1 children's hospital in the world (strike 1).  He also suggested that Dylan would benefit more from a mood stabalizer like... w3llbutrin (strike 2).  When I pointed out that wasn't an option he mentioned drugs like depakote (strike 3).  WTF!  Of course, I didn't sleep because now I was worried that we weren't doing this the right way.  I called the developmental doc who basically said that he was way off base which is what our instincts were telling us.  I'm thinking we may have outgrown our behavioral doc.  He's helped us a great deal but our parenting has improved and we really can't afford to keep going to him ($160 an hour!).  As my best friend pointed out, he has a vested interest in the drugs NOT working.  We are going to play this one by ear.