"Change, when it comes, cracks everything open."
Dorothy Allen

Thursday, December 8, 2011

The Adderall Diaries, Day 1-3

Geoff and I decided it was time to delve into the world of autism medications for our son.  We have tried everything- homeopathic and naturopathic medicine, OT, PT, ST, Swim therapy, Art Therapy, Music Therapy, Social Skills Groups, Special Needs Camps through Red Roof and AO, SN activities like gymnastics, play dates, swimming, etc.  We have private one on one therapy, had him in NPCC special need classes for 4 years, and therapy for a year before that.  We have been waitlisted (not once, but twice) for IBI/ABA services with Bethesda.  He is gluten free, casien free, beef free.  He eats as much organic as I can possibly afford.  I have piles and piles of clothing and aids- chewies, compression shirts, tactile and kinetic fidget toys, special adaptive pens, scissors, spoons, forks, knives, plates, glasses, paint brushes, bicycle pedals...and the list goes on and on and on...
And in all of this, Geoff and I have avoided medication like the plague.  We never even talked about it.  We have him on multiple supplements including 4 multivitamins a day, a calcium/magnisum supplement, omega 3 fishoil supplement (EPA/DHA), Brain Energy to stimulate him, digestive enzymes to help him process food more effieciently, a gluten supplement to allow him to eat gluten occasionally and still digest it.

And now, after all of this, after 8 years of trying everything we can think of and everything we read about, we decided (well, I did, and Geoff agreed) that it was time to try medications.

It's not that I am categorically opposed to meds.  I just think that the world in general (not just autistic kids) are medicated way more that is necessary, or than we should be.  The fact that little kids can become immunce to antibiotics because they have taken so many is crazy to me.  That I can look in someone's medicine cabinet (not that I do!!) and there are meds to fall asleep, to wake up, for headaches, for cramps, for back aches, for muscle aches, and so on and so on, just seems insane. I will sometimes let my kids burn a fever a little, because that is the body's way of eliminating an infection.  I let their noses run, becuase that is how the body eliminates what it doesn't need.  I rely on mentholatum rub on their chests and backs to ease a cough, and run a hot air humidifier to ease their sleep.  But, when it's bad, I will give them cough medicine to help them sleep.  I'm not an idiot.

When it comes to autism, alot of kids are put on meds automatically.  I honestly think we gave it a fair shot.  it was now time to try something new.

We met with the DR a couple of times.  He was pretty thorough when he asked me why I wanted Sebastian to try meds.  He wanted to make sure that we were doing it for the right reasons, and not because the school or someone had pressured us into it.  I knew my reasons, and told them to him straight and he agreed. 

We brought Sebastian back for a baseline work up, and he prescribed us with a low dose Adderall prescription.  The pharmacist said she had to order it in, she hadn't seen a dose so low.  That made me feel better. 

On Tuesday, we gave him his first dose.  That was the day of his school play.  We went to go see him, and the one EA said that she wanted to talk to us afterwards.  She brought him to us, after the play, and told us that earlier that day, he had an episode where he was poking himself with his pen and his marker, hard enough to leave marks.  He was shaking his hands and his arms and saying "make it stop!"  It was like he had pins and needles in his arms.  The EA gave him a pressure brushing and his "squishies" and he seemd to calm right down. 
I noticed that night that Sebastian's hands, which are always always cold, were actually warm.  I thought maybe the medication was increasing his blood flow, or his was just energized enough that he was increasing his own blood flow by just moving more.
He went to bed at 9 o'clock that night, after a night of lots and lots of chit chat, and tons and tons of eye contact.
He was up again at 11.
and up until 5am.

We finally got him back to bed about 5am, and he slept until 7am.  We kept him home from school, and gave him his second dose.
My mother, who had him much of the day, said that he was like Kermit on speed.  She said that it wasn't Sebastian at all.  I was trapped at work, and so worried about him, my manic boy, I didn't know what to do.  I had a thing for work at night, and I didn't know whether to go, what to do.  I was tired, and worried sick.  Geoff called me later, once Sebastian was home and said that he was fine.  Yes he was hyper, but still mainly ok.  I went to my work gathering, and made it home by 8:30.
My boy was still up, so I curled up with him,  I realized that when I did pressure massage on his hands, in particular, it really seemed to relax him.  I got him to go to sleep by 9. 

I decided to treat it like a newborn, sleep when he sleeps, so I can be awake when he is awake.  We both managed to sleep until 1am.  That's when he got up, and stayed up, mostly, until 5.  We laid back down and slept til 7ish.  Then he was well and truly up, and so was Sawyer.  That started my day.

Geoff and I decided it was time to call the DR, and at least find out if what we were seeing was normal.  On top of not sleeping, he had pretty much stopped eating, except for little nibbles here and there.  His obsessions seemed to be intensifiing, to the point that he was crying over a cut on his finger that he wanted "off".  That lasted for 20 minutes.  He scratched his knee hard enough he was bleeding, and was rubbing his lips and chapping them.  His stutter has gotten so bad, he can only get out maybe 1 in 3 words.
He is making crazy eye contact.  He says he feels great.  He is using phrases, just a few to start, that he hasn't used before.  When we can get him to focus, he is answering questions appropriately and in real depth. 

So, we wanted to know from the DR, whether what we were seeing was normal, whether it would go away, or at least lessen.  With two days in, is it possible for the impact to be this great, with this low of a dose?

We didn't give him today's dose.  He's asleep now, and I think he will stay asleep.  Fingers crossed.

The DR did call back eventually, and said that yes, this is all normal and to be expected.  That we should give it a week, and if it is stil happening with this intensity, then we need to look at changing dosages or medications.  We already have an appointment with the DR next week, just to check.

As always, when it comes to Sebastian, I worry that I am doing the right thing.  I hope I am.  I try to remember that nothing is permanent, and I can stop whenever I want.  I hope that this works out.  I hope that it helps.

I will keep you all up to date. Wish us luck!

Rosie N. Grey
The N stands for "new path to enlightenment".

1 comment:

  1. Roan had sleeping disruption, lack of appetite, his Tourette's tics kicked into high gear, he was emotional and depressed. Quick to cry. It went away in time. He rarely has an episode of any of the above. He is also on very small doses to the point where they are often special ordered. Keep pushing along, it will come in time.

    Hang in there. As long as you are seeing some improvement the side effects will work their way out.

    Much love to you all as you move through this next step.