RE: Fwd: Good news, bad news, massive frustration

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Tina you will remain in my prayers.

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nne

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> Good news, bad news, massive frustration

> To: mserslife mserslife >

>

>

> 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.

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