Re: Good news, bad news, massive frustration

[Guest guest]

Well, the doc didn't call on Friday, and they had the phones going straight to voice mail.  So Friday night, I told him not to take the clonodine at all, and go back to the Remeron, and he finally got about 7 hours straight of sleep (more sleep than he got all week).  Saturday, though, the doc called back, and called him in Trazedone.  He's not yet sleeping a full night, but he's at least getting a decent night's sleep. 

On the good news front, Calvin Hagenback has gone home!  His dad even captured a video of him walking out the hospital with the assistance of an AFO.  His coumadin levels are finally up where they need to be!Tina

 

Poor Devin!  Shame on that doctor for not having a back up!!

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

 

 

To: MSersLife

Sent: Friday, November 11, 2011 3:25 PMSubject: Re: Good news, bad news, massive frustration

According to his dad's latest post, they are just waiting on his Coumadin levels to get higher before discharge from the hospital.  Of course, he still needs lots of OT and PT, and since he's on blood thinners, we just have to hope that nothing else happens, and the blood clot goes down.

Yeah, the store manager said that a lot of parents wouldn't have made the kid bring it back.  I was totally floored when I heard that.  Devin is actually doing worse.  He's barely sleeping at all now.  Since Tuesday, we've been cutting his clonodine pills in half to wean him off it, so tonight he won't be taking any, and I'm going to have him go back to taking the Remeron until the doctor gets back to us.  He's just so exhausted, and I think that is where the hallucinations that he had came from.  The doctor is supposed to be back in the office today, but they haven't been answering their phones - just letting it go straight to voice mail, and I still haven't received a return call.  So I'm doing what I think is best for Devin.  Last night he was working on homework that he hadn't turned in last week, it was about 10:30, and he couldn't function.  I told him just to go to bed and get on it today -

which he did and was done in about 30 minutes.  I do think he's getting more sleep than what he's saying - I think he drifts a lot, but it's still not a lot of sleep.

Tina

 

What good news on little Calvin!  Thanks for the update.  He's a little fighter, isn't he?  How are his parents doing?

It sounds like you and your husband handled the shoplifter incident appropriately.  I think having to go back to the store is the best punishment of all. 

It does sound like your 16 year old is having an adverse reaction to the new medication.  How is he doing now?  Do you have another psychiatrist in mind for him?  Good luck finding a good doc for him. 

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

 

 

To: mserslife <mserslife >

Sent: Thursday, November 10, 2011 1:46 PMSubject: Good news, bad news, massive frustration

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.

[Guest guest]

I am glad the dr got back to you and that things are getting better and that

Calvin went home. Continued prayers.

Hugs

nne

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> * Good news, bad news, massive frustration

>>

>>

>>

>> 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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[Guest guest]

Great news on little Calvin! Prayers were answered.I'm glad to hear your son is getting some sleep finally. He must be absolutely exhausted!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, November 14, 2011 12:15 PMSubject: Re: Good news, bad news, massive frustration

Well, the doc didn't call on Friday, and they had the phones going straight to voice mail. So Friday night, I told him not to take the clonodine at all, and go back to the Remeron, and he finally got about 7 hours straight of sleep (more sleep than he got all week). Saturday, though, the doc called back, and called him in Trazedone. He's not yet sleeping a full night, but he's at least getting a decent night's sleep.

On the good news front, Calvin Hagenback has gone home! His dad even captured a video of him walking out the hospital with the assistance of an AFO. His coumadin levels are finally up where they need to be!Tina

Poor Devin! Shame on that doctor for not having a back up!!

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: MSersLife

Sent: Friday, November 11, 2011 3:25 PMSubject: Re: Good news, bad news, massive frustration

According to his dad's latest post, they are just waiting on his Coumadin levels to get higher before discharge from the hospital. Of course, he still needs lots of OT and PT, and since he's on blood thinners, we just have to hope that nothing else happens, and the blood clot goes down.

Yeah, the store manager said that a lot of parents wouldn't have made the kid bring it back. I was totally floored when I heard that. Devin is actually doing worse. He's barely sleeping at all now. Since Tuesday, we've been cutting his clonodine pills in half to wean him off it, so tonight he won't be taking any, and I'm going to have him go back to taking the Remeron until the doctor gets back to us. He's just so exhausted, and I think that is where the hallucinations that he had came from. The doctor is supposed to be back in the office today, but they haven't been answering their phones - just letting it go straight to voice mail, and I still haven't received a return call. So I'm doing what I think is best for Devin. Last night he was working on homework that he hadn't turned in last week, it was about 10:30, and he couldn't function. I told him just to go to bed and get on it today -

which he did and was done in about 30 minutes. I do think he's getting more sleep than what he's saying - I think he drifts a lot, but it's still not a lot of sleep.

Tina

What good news on little Calvin! Thanks for the update. He's a little fighter, isn't he? How are his parents doing?

It sounds like you and your husband handled the shoplifter incident appropriately. I think having to go back to the store is the best punishment of all.

It does sound like your 16 year old is having an adverse reaction to the new medication. How is he doing now? Do you have another psychiatrist in mind for him? Good luck finding a good doc for him.

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: mserslife <mserslife >

Sent: Thursday, November 10, 2011 1:46 PMSubject: Good news, bad news, massive frustration

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.

[Guest guest]

Great news on little Calvin! Prayers were answered.I'm glad to hear your son is getting some sleep finally. He must be absolutely exhausted!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, November 14, 2011 12:15 PMSubject: Re: Good news, bad news, massive frustration

Well, the doc didn't call on Friday, and they had the phones going straight to voice mail. So Friday night, I told him not to take the clonodine at all, and go back to the Remeron, and he finally got about 7 hours straight of sleep (more sleep than he got all week). Saturday, though, the doc called back, and called him in Trazedone. He's not yet sleeping a full night, but he's at least getting a decent night's sleep.

On the good news front, Calvin Hagenback has gone home! His dad even captured a video of him walking out the hospital with the assistance of an AFO. His coumadin levels are finally up where they need to be!Tina

Poor Devin! Shame on that doctor for not having a back up!!

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: MSersLife

Sent: Friday, November 11, 2011 3:25 PMSubject: Re: Good news, bad news, massive frustration

According to his dad's latest post, they are just waiting on his Coumadin levels to get higher before discharge from the hospital. Of course, he still needs lots of OT and PT, and since he's on blood thinners, we just have to hope that nothing else happens, and the blood clot goes down.

Yeah, the store manager said that a lot of parents wouldn't have made the kid bring it back. I was totally floored when I heard that. Devin is actually doing worse. He's barely sleeping at all now. Since Tuesday, we've been cutting his clonodine pills in half to wean him off it, so tonight he won't be taking any, and I'm going to have him go back to taking the Remeron until the doctor gets back to us. He's just so exhausted, and I think that is where the hallucinations that he had came from. The doctor is supposed to be back in the office today, but they haven't been answering their phones - just letting it go straight to voice mail, and I still haven't received a return call. So I'm doing what I think is best for Devin. Last night he was working on homework that he hadn't turned in last week, it was about 10:30, and he couldn't function. I told him just to go to bed and get on it today -

which he did and was done in about 30 minutes. I do think he's getting more sleep than what he's saying - I think he drifts a lot, but it's still not a lot of sleep.

Tina

What good news on little Calvin! Thanks for the update. He's a little fighter, isn't he? How are his parents doing?

It sounds like you and your husband handled the shoplifter incident appropriately. I think having to go back to the store is the best punishment of all.

It does sound like your 16 year old is having an adverse reaction to the new medication. How is he doing now? Do you have another psychiatrist in mind for him? Good luck finding a good doc for him.

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: mserslife <mserslife >

Sent: Thursday, November 10, 2011 1:46 PMSubject: Good news, bad news, massive frustration

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.

[Guest guest]

Great news on little Calvin! Prayers were answered.I'm glad to hear your son is getting some sleep finally. He must be absolutely exhausted!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, November 14, 2011 12:15 PMSubject: Re: Good news, bad news, massive frustration

Well, the doc didn't call on Friday, and they had the phones going straight to voice mail. So Friday night, I told him not to take the clonodine at all, and go back to the Remeron, and he finally got about 7 hours straight of sleep (more sleep than he got all week). Saturday, though, the doc called back, and called him in Trazedone. He's not yet sleeping a full night, but he's at least getting a decent night's sleep.

On the good news front, Calvin Hagenback has gone home! His dad even captured a video of him walking out the hospital with the assistance of an AFO. His coumadin levels are finally up where they need to be!Tina

Poor Devin! Shame on that doctor for not having a back up!!

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: MSersLife

Sent: Friday, November 11, 2011 3:25 PMSubject: Re: Good news, bad news, massive frustration

According to his dad's latest post, they are just waiting on his Coumadin levels to get higher before discharge from the hospital. Of course, he still needs lots of OT and PT, and since he's on blood thinners, we just have to hope that nothing else happens, and the blood clot goes down.

Yeah, the store manager said that a lot of parents wouldn't have made the kid bring it back. I was totally floored when I heard that. Devin is actually doing worse. He's barely sleeping at all now. Since Tuesday, we've been cutting his clonodine pills in half to wean him off it, so tonight he won't be taking any, and I'm going to have him go back to taking the Remeron until the doctor gets back to us. He's just so exhausted, and I think that is where the hallucinations that he had came from. The doctor is supposed to be back in the office today, but they haven't been answering their phones - just letting it go straight to voice mail, and I still haven't received a return call. So I'm doing what I think is best for Devin. Last night he was working on homework that he hadn't turned in last week, it was about 10:30, and he couldn't function. I told him just to go to bed and get on it today -

which he did and was done in about 30 minutes. I do think he's getting more sleep than what he's saying - I think he drifts a lot, but it's still not a lot of sleep.

Tina

What good news on little Calvin! Thanks for the update. He's a little fighter, isn't he? How are his parents doing?

It sounds like you and your husband handled the shoplifter incident appropriately. I think having to go back to the store is the best punishment of all.

It does sound like your 16 year old is having an adverse reaction to the new medication. How is he doing now? Do you have another psychiatrist in mind for him? Good luck finding a good doc for him.

hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: mserslife <mserslife >

Sent: Thursday, November 10, 2011 1:46 PMSubject: Good news, bad news, massive frustration

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.