Good news, bad news, massive frustration

[Guest guest]

The good news first.  Remember the family that I requested prayer for, because their 4 year old son Calvin had a stroke after hitting his head on a rock?  Well, I've been getting regular updates on him.  He's walking, thanks to an AFO device, and yesterday he got himself dressed - he even unbuttoned his pj's!  He's having to relearn how to manipulate and control his whole left side, including his arm and fingers, but he's getting better at it.  Last night he complained of a headache at bed time, but it was just a regular headache.  He is out of ICU and he will be going home as soon as the Coumadin levels get right in his blood (as he still has a blood clot in his brain).  His level right now 1.2, and it needs to be 2 before they go home, so his dose was increased.  He learned how to swallow pills last week, and now he's going to be taking a lot of them!  The severed carotid artery is making progress repairing itself as well.  He's amazed all of his doctors.

The bad news.  Okay, I'm still shaking my head over this one.  Last Saturday, my mother in law took the boys shopping for what was supposed to be a back to school outfit (?).  She got them pants, a few shirts, and (ugh) more Halloween candy that was on sale.  Well, while they were checking out at Wal-Mart, evidently, , my 14 year old grabbed a bottle of 5 hour energy and stuffed in the pocket of his hoodie....no one noticed.  The only reason we realized something was wrong was because after he got home, instead of showing me his things, he bolted upstairs.  His dad was just coming out of the bathroom after a shower, and asked him what he was doing, and he claimed he had to go to the bathroom.  Hubby waited until he got out of the bathroom and he was headed for his room, and asked him to empty his pockets, and there it was.  Well, we took him back to Wal-Mart and made him turn it in and talk to the managers, and they said it was of too little value to press charges (thank god), but he got read the riot act by the managers (we had already done that), etc.  He claims he doesn't know why he did it, why he took that in particular (I think because it's something he's not allowed to have).  Hubby thinks he did it because he's attention seeking.  We'll see.  I'm just at a loss on what to do with him.  He was already grounded for not turning in school work.

The frustration.  Well, there are a couple of frustrations.  Let's get to them in order.  Last week, when the boys saw their psychiatrist, he changed Devin's (my 16 year old) evening meds from Remeron to Clonodine - in the hopes that it will let him sleep better.  Well, we didn't start it until Friday night because we don't start new medications on a school night during the school year.  Friday night he slept fine, Saturday he slept okay, Sunday and Monday he barely got any sleep, and started complaining of what I believe to be sleep deprived induced hallucinations, generally when he's on the edges of sleep.  Sunday morning, he saw a man sitting on his dresser smoking, Sunday night, he said he heard things that he's sure weren't there, Monday morning he looked up at his ceiling and saw holes all over his ceiling.  He didn't tell us all of this until Monday evening, and we said take the med tonight, we'll call the doctor in the morning.  Well, I call the doctor Tuesday morning, and he's out of the office until tomorrow, or after tomorrow, I'm not sure.  And he has NO COVERING DOCTOR, at all.  Patients who have immediate problems are advised to go the to Resource Center for the psych unit for that hospital.  I call Devin's pediatrician, they wouldn't advise anything because they don't prescribe those kind of drugs, so they don't want to take responsibility for it.  The Resource Center said they wouldn't be able to advise until he was seen and evaluated psychiatrically......this isn't necessarily a psych matter, this is a medication side effect matter.  So finally I called the pharmacy, who said that if I wanted to take him off the med, I would have to cut the pill in half (despite his only being on it four days and it being the lowest prescribed dose) for a few days before taking him off it completely.  Wednesday night he had half a pill and took Benedryl at bed time and slept some better.  Same routine last night, but didn't quite sleep as well.  I'm currently looking for a new psychiatrist for the boys, because I can't believe a doctor would prescribe a new medication right before going out of town and being out of touch and I'm tired of him going out of town and leaving no covering doctor.

Frustration part 2.  After my last Tysabri infusion (October 7), I requested that Biogen Idec get it set up for me to have my infusions at a closer hospital.  It's not much closer, but it's all highway driving, so its quicker.  They said they would take care of it, take care of getting the doctor's orders switched to over there, all that.  November 7th, I called Biogen again, as I was now due for an infusion, and hadn't heard back from them.  The new infusion sight (St. 's Hospital) called Biogen on November 3rd to tell them that the doctor had never sent the order to them.  Of course, without the order, they can't schedule me.  The person who answered the line at Biogen was going to talk to my case manager, and find out what the hold up was.  Just in case, I went ahead and called my doctor, and left a message saying that I can't get my infusions at the new infusion center until the doctor sends the order to them, and why hasn't the order been sent yet....and I haven't gotten a call back.  I just hope this goes through soon.  I don't like missing my dose like this.

Tina.