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.
But...
But...
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".

Sleepin' on the cheap

Wow, it's been a while since I blogged.  Before we went away on vacation last week, G and I took the kidlets out on the town, to a hotel and a waterpark. 

  For those that don't know, every year, a bunch of the hotels in Niagara Falls offer a bunch of rooms super cheap.  The money goes to local charities, and all the local people get to have fun and stay at hotels that we wouldn't normally stay at or know about.  Geoff and I always try to pick one that has a water park.  This year, we got the Skyline Inn and the Fallsview Waterpark.


Sawyer and Geoff at dinner



Me and the kid at dinner

 So, we headed down to Clifton Hill.  We checked into our hotel, which was pretty cool.  They have courtyards set up, with an open area, and 2 levels of rooms facing in on it.  We dropped off our stuff, and headed out.  We went to Botson Pizza for dinner.  Sebastian was super stoked because from our seat, he could look across the street and see the Count (the vampire on the Count Dracula Haunted House sign).  We ate a really cool meal, lots of yumminess. 

  

Sebastian leaning over to see the Count.

After dinner, Sawyer and I had decided to go on the big Ferris wheel.  Sebastian wasn't interested at all, and Geoff is funny with heights.  So, the girl and I decided to take it on.  She liked it, but got bored quickly.  It was really, really high, so I got a little tingly in the tummy a couple of times, but it was ok and fun.
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Sawyer on the Ferris Wheel

After the Ferris Wheel, we went into the arcade and played a bunch of games.  The kids ran around like crazy and had some fun.  When it came to prizes, Sebastian picked out a cool stuffed animal.   Sawyer decided that all she wanted was 2 purple shoes- that is purple croc keychains.  She got them, and was thrilled.  

After that, we went to the hotel.  They had a cool event, where they would show movies in the courtyard.   That night, they were showing Cloudy with a Chance of Meatballs.  Kids would go in their pj's, with their pillows and blankies.  Sebastian and Sawyer went right up front, and snuggled in.  It was very fun and very cool. 

Movie at the hotel

After that, we headed back to the room and bed.  Bastian crashed early, Sawyer took a bit longer, and I followed right along behind. 



The next morning, we met my mom and dad at the Perkins restaurant for breakfast.  It was lovely and delicous.  Then we headed to the waterpark.

    

Both the kids had a blast.  I picked fights with an 8 year old and a 10 year old.  I'm not even sorry, because I thought they were picking on Sebastian.  The little girl (8 year old) looked like she was going to cry.  The 10 year old boy was just a dick.  I am still not sorry. 



 Anyway, Sebastian gets tired pretty easy, so we took quite a few breaks.  Poor Geoff got stuck with the crazy Sawyer, as she ran all over and played and played and played.  But it was a fun day, and I am glad we went.

Sebastian posing with his sister, ready for the picture

Sawyer, unhappy and yelling
Typical.

Already looking forward to next year :)

Rosie N. Grey



The N stands for "Niagara Falls fun night!"

Dinner Time Shenanigans

Meal time is always an adventure here.  Sebastian won't eat veggies, anything smooth or creamy, anything with sauce, anything too hot, etc, etc.  Sawyer won't eat meat, needs to have ketchup for pretty much everything (including dessert) and will at time arbitrarily decide to not eat anything at all. 

Tonight, Geoff made a really nice dinner- ham, mashed potatoes, raw veggies with dip.  Sebastian ate the ham.  Sawyer however, was not happy with the food selection.  She had set the table- with paper plates, soup spoons and an ice cream scoop.  She decided that she wanted ice cream for dinner.  Nothing else would do. 

I had a stroke of genius.  I took the ice cream scoop, and scooped up some mashed potatoes.  I put it on her plate, all rounded and nice.  I told her it was white (aka vanilla) ice cream. 

 Geoff laughed convinced this wouldn't work, and for a while it was touch and go.  She was angry that we didn't have black (aka chocolate) ice cream.  She cried at that, but didn't blink when I suggested that she put butter on her ice cream.

Finally, after some whining and carrying on, she decided to sample her food.  Using the ice cream scoop, she started by licking the butter only, then gradually moving on to the potatoes. 

Her final verdict?  "This isn't bad.  Dinner isn't yucky!"  All with the amazement and enthusiasum of a 3-year old.

Dinner isn't yucky!  Win!

Rosie N. Grey

The N stands for "nom nom".

Vacation

I am back from a week's vacation.

I will get into the details of the trip in other posts- I am far too tired to do it now.  Suffice it to say that the trip was lovely, no drama, wonderful weather and fantastic company. 

We were busy every day, walking and visiting, and sightseeing.  But we were also taking time to relax a bit.  I got a couple of sleep-in days, and a bit of a tan.

I missed my babies like crazy.  Every time we did something, I would think about how much Sebastian or Sawyer would have loved to see/hear/taste whatever it was that we were seeing/hearing/tasting.  As I got news from home about them through the week, my heart would ache a little and I would begin to wish for home.

However, when the week came to a close, I was reluctant to leave the warm weather, and the overall attitude of the island.  Everything is very laid back and casual.  Even for me, who thinks and worries about work almost constantly from morning to night, I relaxed and stopped.  I didn't worry about work.  I didn't think about the overtime I was missing.  Until the 2nd to last day, I didn't worry about the emails piling up, and the inevitable changes that were taking place, that I would have to catch up on. 

Instead, I lived in the moment, experiencing a different culture, trying different foods and activities. 

And now that I am back??  I am trying to adjust.  Today was hard.  I wanted to cry a lot.  I feel overwhelmed and discouraged.  It is hard to be motivated to learn and try and complete these increasingly difficult tasks.  My dissatisfaction with the daily grind is back and worse than ever. 

My vacation was wonderful.  My goal now is to make my life as wonderful as the vacation, every single day.

Rosie N. Grey
The N stands for "next vacation, please."

Never, never, never

Tonight, Geoff and the kidlets and I were walking around the mall, beginning our Christmas shopping.  While we were window shopping, we walked past Green Earth.  They can sometimes have really cool things, and sometimes not.  It really is hit or miss.

Sebastian said his knees were hurting so he and I sat on a bench, while Geoff and Sawyer went in to browse.  While I sat, rubbing Sebastian's knee, I looked over into the window display.

There, in the bottom corner, was a stone plaque.  Very similar to a lot of the ones that you see in people's homes or on their desks.  This one was very simple, very basic.

It hit me like a ton of bricks.  It brought a big lump in my throat and tears to my eyes.   I don't know why.  I'm not questioning it.

I told Geoff I liked it, and wanted it for Christmas.  But who knows?

Anyway, weird.

Rosie N. Grey

The N stands for "never, never, never."

Not again.

No sooner do I post a blog about how Morph is ok, do I get news to the contrary. 

I had mentioned that when I took Morph to the vet, they did blood and urine.  The results came back.

I knew it wasn't good when:
1. When the vet called and left her message that the blood work was back, she didn't say "It's all good."  Just 3 little words.  Easy to say.  But she didn't.
2. When I didn't return her call yesterday (because we had a hotel room for Sleep Cheap), she called back today.  Again- no "It's all good."
3. When I did call back today, and told the receptionist why I was calling, she put me on hold to go get the vet..out of another appointment.  So not good.

So, the basics are that Morph is very likely diabetic and he has stage 2 (of 4) kidney disease.

There was some talk about what can be done.  Kidney disease is not curable,  but can be controlled and the progress potentially slowed down.  The diabetes would still need to be confirmed through more blood work.

I told her I had to think about it.  I feel horrible saying that.  I wanted my answer to be "Yes, of course, anything you say.  Spare no expense.  Save my boy."

But the reality is that I can't afford thousands of dollars (or even hundreds) in medications and tests.  I have one income right now, plus therapy and meds for Sebastian, nursery school for Sawyer.  I started my own vitamin regime, to help me feel better, and that costs money. Christmas is coming.  So no, I don't have money to spare.

Morph is also 15 years old.  I find it hard to justify doing all this stuff, just to have him die of old age in a year (or a month!) anyway. 

But as I type this, Morph is laying with his front paws and head laying on my right arm.  It's his new favorite position.  He meows at me if my typing disrupts his sleep too much.  He is heavy and warm and so cute.  I have spent much of the afternoon trying not to cry, as I think about what I want to do, what I can do, and what I should do.  It's so hard.  So hard.

I talked to Geoff, and he is understanding where I am coming from.  He gets it.  His vote is to get more information on what will happen if we don't do treatment, if we let him be.  He doesn't seem to be in any pain, but what do I know?? 

I am at a loss.  I am going to sleep on it, and try to decide tomorrow.  Tonight I will sleep with my kitty, and enjoy him while it lasts.

Rosie N. Grey
The N stands for "not again."

Update on Morph

Thanks to all of you that sent your concerns and good thoughts to us regarding Morph.  I am happy to report that he has been given a clean bill of health, realtively speaking.  Anyway, he isn't on the verge of dying, at least so far as we can tell.

The vet did blood and urine (yikes!  Costly!) and we will get that back tomorrow.  He has some dental disease and has lost a couple of teeth.  She said he probably has arthritis in his hips, and that the loss of muscle mass is the thinning out that we see there.  But nothing ground breaking or earth-shattering.

My boy will be around a little while longer. :)

Rosie N. Grey
The N stands for "news of a good nature, for a change!"