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. 


  1. Always trust your instincts. Your best friend is right - there is an agenda there - conscious or not. I'll be waiting to hear how it goes...

  2. I just stumbled upon your blog. I'm no professional, but I am working on a BA in Psych and have personal experience with medication resistant psychiatric disorders. I hope everything goes well. It is good to see someone take a vested interest in being informed and sharing that experience.

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