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Status Report #2

February 25, 2009 · Posted in Medical · 1 Comment 
Dr. X,
 
Stephen has been doing better in school and working more independently and participating more with his classmates. His aid says he is calmer. He is still asking a lot of questions,but she says he is thinking  about things more and his questions reflect that. He has a burst of work energy in the afternoon and wants to work, work, work on extra worksheet etc. Also, he is staying in class longer without as many breaks.
 
At home, he is still “touchy” and can become very whiney in the evening, but he is not hitting, kicking, or biting. He has become a little more playful. His appetite is better. He still has a hard time going to sleep but he has been falling asleep earlier than he was when he started the medication. He had a friend over on Saturday and played Game Cube for a longer stretch than he usually does, and he is actually trying to win and be competitive which was always touch and go in the past.
 
Also, he is not as jittery as he was when he started the meds.
 
He has been asking a lot of questions about people dying and this did start before starting  the Vyvanse and increasing the Zoloft. We answer his  questions and try to re-direct. I do feel that he may be afraid of dying. He has been through a lot with blood tests, doctor visits, etc.
 
To confirm, it is okay to give him his 20mg of Vyvanse in the morning and then 20mg of Zoloft right after the vyvanse then 20mg of Zoloft at bedtime.
 
Also, I called your nurse to schedule the MRI and the eeg, and she said it was not in your notes to do so. Do you want to order those tests? Also, do you recommend neuro-psch testing? 
Thank You,
His Mom

The Pink Cloud

February 25, 2009 · Posted in General · Comment 

There is an old 12 Step dictum to avoid “the pink cloud:” the days when you’ve been sober awhile, feel like everything’s under control, and are tempted to have a beer after work with friends. The Pink Cloud, the 12 Stepper’s say, is the first step all the way to the basement.

 We are having our own “pink cloud” week this week. Our son has been on new meds for two weeks now, is three weeks into a great run at school, without significant incident or meltdowns, and made it through a birthday party last weekend. We were shocked that he was invited, and even more shocked that he played from beginning to end, and that the other boys seemed to know, accept, and like him.

So, we’re feeling pretty good this week. He’s been invited to another party, but we also scheduled an MRI for him today, to determine if he has physiological abnormalities that require attention. He had a near meltdown at school yesterday, in a large, disorganized, group setting. He teetered on the edge of mayhem tonight, but pulled himself back.

We want to believe that a corner is being turned. We want to believe that “normalcy” is nearby. We need to know that this is manageable, and controllable, and predictable, and sane.

I know, though, that we are one drink away from a blackout. And, I feel guilty for knowing that. And sad.

Status Report #1

February 17, 2009 · Posted in Medical · 2 Comments 

Dr. X:

Stephen started 20 mg of Vyvanse last Thursday 2-12-09 and increased his Zoloft from 25mg a day to 40 mg a day.

The day he started I received a call from school. His stomach was upset. He was tired and slept 45 minutes at school. He had a meltdown prior to falling asleep and screamed, bit, kicked, and hit his aide. He rested and performed well the rest of the day.

He didn’t go school last Friday because his stomach was upset and he was very tired.

Throughout the weekend, he has been talking very fast. He is anxious and more clingy to me (mother) than usual. He is more serious. He is very focused on his narrow range of subjects and has been asking a million questions. He does this anyway and more so when anxious. He has not been as playful and not as interested in his brothers’ friends as usual. Also, he had a huge meltdown Saturday night with biting, kicking, screaming etc.

He has had privileges taken away for his behavior, and we are still making him accountable for his extreme behaviors.

His appetite has been decreased but that was better yesterday (2-16-09). He is having a hard time getting to sleep and wants to sleep late.

Again, the negative behaviors are nothing that he hasn’t displayed in the past, but he is more jittery and anxious than usual. Also, he did have 2 meltdowns at school last Wednesday BEFORE taking the Vyvanse. My husband and I think that was a reaction to the office visit which was last Tuesday, where he heard about all of his negative behaviors, but we agree with you that he needs to know that these are problems that he has to work on improving his behavior.

Thank you,

His Mom

On the positive side, he has been more focused doing school papers that he practices at home, and he now has a skill down that was giving him trouble. He sat and watched 2 movies all the way through which he rarely does.

 

Fatherhood

February 17, 2009 · Posted in Uncategorized · Comment 

How far could you carry a child, if you had to?

If your child was injured, bleeding, maybe dying, and you had to carry him 10 straight miles, non-stop, could you? Running? You would, but could you?

Could you carry a 54 lb boy, in distress, probably kicking, screaming, and biting you, maybe while you are also adjusting a tourniquet, or performing intermittent CPR, or trying to arrange for specialists to meet you at the Emergency Room because he’s having a seizure, all the way from your backyard to the nearest qualified medical facility? Do you even know the right facility, or how to get there on foot? Could you do it running, and get him there before it’s too late?

How far can you carry him, at top-speed, with his life on the line?

Can you even go top-speed anymore? Do you have a stent in your right coronary artery, and are you afraid it might burst, because you still smoke sometimes and probably drink more than you should and you haven’t been able to run more than two miles in over two years? Sure, you swim laps, but I doubt that the ER is across a lake. You’re not fording a river, you’re running and lifting and carrying and crying, to save your son’s life.

Can you go top-speed, with a child in your arms, all the way to the best doctor you can find? Over the river, and through the woods, if you have to? Over any obstacle, to find the most qualified doctor, the one who can save your son’s life?

Can you pay that doctor, now, are you employed, still, and with benefits?

How far can you carry this child, right now, if you have to?

How far?

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