Approx. 3 years later and I can see how far we've come. We are living with a much more stable M than ever. We went through many med changes, some growth in maturity, and see to have now found a good balance.
M currently takes 600mg of Seroquel XR, 100 mg of Lamictal, and a little kicker of 5 mg Celexa. Seroquel seems to be the only Atypical Anti-psychotic that works for him, though we must always be slow with our changes as not to cause urinary retention (those days were never fun). It keeps him away from the edge of explosion and the XR allows him to only take pills in the am. We added the Lamictal to further enhance his mood and it brought him up some. But, even then, M seemed like he was merely existing and that's no life for an 11 yr old. He should be living life and enjoying it as much as possible. So, I requested Lexapro, but since my insurance doesn't like to pay for it, we settled for its original version, Celexa. I realize that at 5 mg, it's like nothing. Celexa is like 1/2 the strength of Lexapro and even 5 mg of Lexapro is nothing, but we see a bit of improvement. Not sure if the pdoc will want to keep it at this "insignificant" level at our next appt, but if things are going so well, i don't see the point in messing with the equation. Also, his tics seem to be well controlled on this combo. We only see them when he is really stressed or perhaps over stimulated.
We switched pdocs about 2 yrs ago. Our original pdoc was always unwilling to listen and was very condescending. I don't suffer from anxiety, but I literally had a panic attack after one of our appointments and blacked out. The man is just awful. So, on the suggestion of a friend, we found an out-of-network pdoc about 30 minutes away from us that is wonderful.
One thing I do intend to keep an eye on is the developments with the new DSM. They are proposing a new dx called Temper Disregulation Disorder. Reading the description describes M to a "T"! I just sat there after reading it and said, "WOW!" The recommended first line of treatment for this is SSRI's, where for a bipolar dx, SSRI's can throw one into a manic state. So, it's a dangerous line and I hope if this new dx is added, that pdocs head caution and really look at the child before prescribing. But, perhaps our dx of bipolar could stand some revision over the years....as the teens hit, perhaps we'll get a clearer picture.
So, right now, we have a dx Bipolar, 11 yr old boy who's nearing puberty, but remains fairly stable. Thank the universe for that!
Wednesday, August 11, 2010
Monday, July 16, 2007
Slowly watching the irritability increase...
So, M has been on Celexa for about 6 weeks total (4 wks at 20 mg's) and 4 1/2 weeks on the Tenex. I'm slowly seeing his level of tolerance decrease...he's becoming more irritable and I'm starting to see a return to the less stable M that we knew before the meds. We're not *at that point* yet, but I'm waiting for the other shoe to drop.
Last night apparently he just flicked a switch in his head and decided to be a pain for dh while I was a work and then refused to take a shower or bath. By the time I got home, he was a whiney mess. Right before bed he was complaining about a itch/spot on his finger that if he pressed on it or itched it it made a spot on his wrist "feel funny" and he was rolling all over the couch and kicking his legs and throwing a nice little fit. After several attempts at remedying the situation, I finally convinced him to go to bed.
I don't know how to sort out whether this is solely in reaction to the fact that he started the Summer Program at school or if it's also the med's not working enough or what. M has a pdoc appt in a week and then his first tdoc appt at the end of next month.
Last night apparently he just flicked a switch in his head and decided to be a pain for dh while I was a work and then refused to take a shower or bath. By the time I got home, he was a whiney mess. Right before bed he was complaining about a itch/spot on his finger that if he pressed on it or itched it it made a spot on his wrist "feel funny" and he was rolling all over the couch and kicking his legs and throwing a nice little fit. After several attempts at remedying the situation, I finally convinced him to go to bed.
I don't know how to sort out whether this is solely in reaction to the fact that he started the Summer Program at school or if it's also the med's not working enough or what. M has a pdoc appt in a week and then his first tdoc appt at the end of next month.
Thursday, July 12, 2007
1st Meltdown Post-Phosp (jinxed myself)
I knew it as soon as I did it. I opened my datebook today and counted the weeks since M's last phosp admit (3 1/2 weeks- WOOHOO! A new record!) and as soon as I rejoiced and commented to myself- out loud- that we've been meltdown-free the entire time, I knew I jinxed myself! Doh!
M got off the bus from his Summer Program at his theraputic school and when asked how his day was, gave me his standard "good" answer. Shortly after he got home, the neighborhood kids started showing up, one by one, until we had three of them here. They went downstairs to play and M was clearly on edge and easily aggitated by EVERYTHING...every sound, every comment, every thing! I eventually told M that perhaps it would be better if he took a break from his friends and have them go home for a while. I went upstairs to use the bathroom and by the time I was out, his friends were gone and M was on the couch wrapped in a blanket with his forehead all tense.
Then he started telling me about how angry he was and I asked him how long he's been feeling angry and he said all WEEK..wednesday, tuesday, and monday (he started the Summer Camp Program on Monday). He went onto the floor and started with his comment about how his body felt funny (which he sometimes says before he goes into a full blown rage) and then started kicking and rolling around and going on and on about how he had to stop going to the camp. He shared a few things like how some of the other kids kick and bang on the walls which really annoys him and makes him angry and how because the camp makes him angry he thinks he'll get sent back to the hospital. He also said that his class size is larger than his typical class size...10-15 as opposed to 7, which he feels is too many kids, which he also thinks is making him angry.
So, after about 20-30 minutes of him going on and on, I was able to talk to him and I told him that we had a couple of options...if he feels there are too many kids in his class at camp, then I will call the school tomorrow morning and talk to someone and see if anything can be done about maybe getting an adult to work with him more one-on-one or check in with him throughout the day to see how he's feeling and I asked him how he felt about that...he said that sounded good and he wants me to call FIRST THING in the morning! LOL Then I said the second option was that if that wasn't enough and he was still feeling really angry, then perhaps his medication wasn't helpful enough or at the right doses, so we could call the pdoc and get an appt to talk to him about how he's feeling and see what pdoc says (we don't have a tdoc appt until late next month yet). He said OK with tears in his eyes. I grabbed his hand and told him that I was glad he told me how he was feeling and that I was SO proud of him for how well behaved he's been at camp and that we were going to work hard to make sure that he feels better.
I *SO* hope this is not the begining of a downward spiral...that it's just a blip...a bump in the road...a wrinkle that can be ironed out.
M got off the bus from his Summer Program at his theraputic school and when asked how his day was, gave me his standard "good" answer. Shortly after he got home, the neighborhood kids started showing up, one by one, until we had three of them here. They went downstairs to play and M was clearly on edge and easily aggitated by EVERYTHING...every sound, every comment, every thing! I eventually told M that perhaps it would be better if he took a break from his friends and have them go home for a while. I went upstairs to use the bathroom and by the time I was out, his friends were gone and M was on the couch wrapped in a blanket with his forehead all tense.
Then he started telling me about how angry he was and I asked him how long he's been feeling angry and he said all WEEK..wednesday, tuesday, and monday (he started the Summer Camp Program on Monday). He went onto the floor and started with his comment about how his body felt funny (which he sometimes says before he goes into a full blown rage) and then started kicking and rolling around and going on and on about how he had to stop going to the camp. He shared a few things like how some of the other kids kick and bang on the walls which really annoys him and makes him angry and how because the camp makes him angry he thinks he'll get sent back to the hospital. He also said that his class size is larger than his typical class size...10-15 as opposed to 7, which he feels is too many kids, which he also thinks is making him angry.
So, after about 20-30 minutes of him going on and on, I was able to talk to him and I told him that we had a couple of options...if he feels there are too many kids in his class at camp, then I will call the school tomorrow morning and talk to someone and see if anything can be done about maybe getting an adult to work with him more one-on-one or check in with him throughout the day to see how he's feeling and I asked him how he felt about that...he said that sounded good and he wants me to call FIRST THING in the morning! LOL Then I said the second option was that if that wasn't enough and he was still feeling really angry, then perhaps his medication wasn't helpful enough or at the right doses, so we could call the pdoc and get an appt to talk to him about how he's feeling and see what pdoc says (we don't have a tdoc appt until late next month yet). He said OK with tears in his eyes. I grabbed his hand and told him that I was glad he told me how he was feeling and that I was SO proud of him for how well behaved he's been at camp and that we were going to work hard to make sure that he feels better.
I *SO* hope this is not the begining of a downward spiral...that it's just a blip...a bump in the road...a wrinkle that can be ironed out.
Thursday, June 28, 2007
1 1/2 Weeks Post Discharge and *Glup* All is well!
So, believe it or not...M was discharged a week and a half ago (Monday, June 18th) to go directly to his new school and life has been relatively copacetic!
We had a meeting with the phosp pdoc, sw, M's old school's sw, and (via teleconference) his new schools sw the Wednesday before discharge where we developed the discharge plan and made the final med change (swapped out the Strattera- finally- and swapped in Tenex). Not sure I personally feel the Tenex is either needed or helping, but it's there. I AM glad the Strattera is OUT. Life is better. The sw from M's old school was instrumental and invaluable in orchestrating our discharge and getting M on board with going to his new school. Prior to her involvement, he was adamantly opposed to going to his new school and as soon as she was on the scene, he was all for it. She pitched the "M Team" idea and it was a beautiful thing. :)
Upon discharge, the Celexa was increased to twice a day, so I'll be watching M closely for any reaction or mood changes. 10 mg, from what I hear, was a very low dose, so 20 mg a day seems a bit more substantial. We're now at 3 1/2 weeks total ON Celexa and 1 1/2 weeks on the 20 mg/day. We're at about 2 weeks now on the Tenex. M is still on the Seroquel, which seems to be a good med for him. Of the three atypical anti-psychotics we've tried, it seems to be the best fit, as long as we titrate SLOWLY in either direction. It's evident we can't go up or down abruptly or his body revolts! (remember- we doubled the dose and he couldn't pee, then he took a 24 hr Holiday to try to solve that problem and he was vomiting 'round the clock!)
So...how is M actually doing? Well, he WENT TO SCHOOL! That was HUGE! He TOOK THE BUS from day 2 on!!!! That was HUGE! He WENT TO THE PDOC without raging! That was HUGE! In fact :::knock on wood::: we've been *rage free* the entire week and a half since discharge! We've had a lot of activity the past week too....his cousins were visiting from out of town. He was very excited to see them...even said, "I can't stop smiling" when they're around. Though I was a little fearful that this was a red flag, I took it at face value as a happy moment. He also went to an amusement park over the weekend with his cousins where he bumped into an old friend/girlfriend from preschool. I wasn't there, but dh said it took him a short while to warm up to her because he didn't remember her, but after a short time they were laughing, playing, holding hands, sharing food (food M has REFUSED to try in the past...like ketchup on french fries!!!), and riding rides M has REFUSED to ride (like roller-coasters!), and was genuinely HAPPY! DH said he hasn't seen M that HAPPY in he can't remember when! It was wonderful.
I still hear "the voice." That warning voice that M makes when he's irritable, hyped up, cranky, "manic-like," whatever you want to call it. That voice that tells you, "I had better tip toe around M today or I might set him off. He still yells. He still does not accept the first answer. He still expends WAY too much energy trying to find ways to make something happen that you said NO to. He still obsesses about video games and buying things and finding ways to get someone to take him to the store to buy things. His brother still pushes his buttons. He's still impulsive. He still has trouble getting along with other kids his age (sets too many rules on play and then walks away when they don't get his rules and start mocking him).
So, life is better. I'm cautiously optimistic. I'm waiting for the other shoe to drop. I've voiced my opinion that I fear M is BiPolar...it's no secret. I'd love for that not to be the case. I'd love for his problems to purely be rooted in anxiety...maybe a hair of depression....some impulse control issues...heck, some ADD. But, the mood swings, the rages, the family history of mood disorders, the intensity of this little boy...I'm remaining cautious and my eyes are peeled. I hope that the Celexa and the Tenex are a good fit for him because they seem to be working, but I hope he doesn't go manic in the next 3 months. If he starts riding down the stairs in a laundry basket or jumping off the top of the swing set, I'm going to start to worry. Happy is great....too happy is not.
We had a meeting with the phosp pdoc, sw, M's old school's sw, and (via teleconference) his new schools sw the Wednesday before discharge where we developed the discharge plan and made the final med change (swapped out the Strattera- finally- and swapped in Tenex). Not sure I personally feel the Tenex is either needed or helping, but it's there. I AM glad the Strattera is OUT. Life is better. The sw from M's old school was instrumental and invaluable in orchestrating our discharge and getting M on board with going to his new school. Prior to her involvement, he was adamantly opposed to going to his new school and as soon as she was on the scene, he was all for it. She pitched the "M Team" idea and it was a beautiful thing. :)
Upon discharge, the Celexa was increased to twice a day, so I'll be watching M closely for any reaction or mood changes. 10 mg, from what I hear, was a very low dose, so 20 mg a day seems a bit more substantial. We're now at 3 1/2 weeks total ON Celexa and 1 1/2 weeks on the 20 mg/day. We're at about 2 weeks now on the Tenex. M is still on the Seroquel, which seems to be a good med for him. Of the three atypical anti-psychotics we've tried, it seems to be the best fit, as long as we titrate SLOWLY in either direction. It's evident we can't go up or down abruptly or his body revolts! (remember- we doubled the dose and he couldn't pee, then he took a 24 hr Holiday to try to solve that problem and he was vomiting 'round the clock!)
So...how is M actually doing? Well, he WENT TO SCHOOL! That was HUGE! He TOOK THE BUS from day 2 on!!!! That was HUGE! He WENT TO THE PDOC without raging! That was HUGE! In fact :::knock on wood::: we've been *rage free* the entire week and a half since discharge! We've had a lot of activity the past week too....his cousins were visiting from out of town. He was very excited to see them...even said, "I can't stop smiling" when they're around. Though I was a little fearful that this was a red flag, I took it at face value as a happy moment. He also went to an amusement park over the weekend with his cousins where he bumped into an old friend/girlfriend from preschool. I wasn't there, but dh said it took him a short while to warm up to her because he didn't remember her, but after a short time they were laughing, playing, holding hands, sharing food (food M has REFUSED to try in the past...like ketchup on french fries!!!), and riding rides M has REFUSED to ride (like roller-coasters!), and was genuinely HAPPY! DH said he hasn't seen M that HAPPY in he can't remember when! It was wonderful.
I still hear "the voice." That warning voice that M makes when he's irritable, hyped up, cranky, "manic-like," whatever you want to call it. That voice that tells you, "I had better tip toe around M today or I might set him off. He still yells. He still does not accept the first answer. He still expends WAY too much energy trying to find ways to make something happen that you said NO to. He still obsesses about video games and buying things and finding ways to get someone to take him to the store to buy things. His brother still pushes his buttons. He's still impulsive. He still has trouble getting along with other kids his age (sets too many rules on play and then walks away when they don't get his rules and start mocking him).
So, life is better. I'm cautiously optimistic. I'm waiting for the other shoe to drop. I've voiced my opinion that I fear M is BiPolar...it's no secret. I'd love for that not to be the case. I'd love for his problems to purely be rooted in anxiety...maybe a hair of depression....some impulse control issues...heck, some ADD. But, the mood swings, the rages, the family history of mood disorders, the intensity of this little boy...I'm remaining cautious and my eyes are peeled. I hope that the Celexa and the Tenex are a good fit for him because they seem to be working, but I hope he doesn't go manic in the next 3 months. If he starts riding down the stairs in a laundry basket or jumping off the top of the swing set, I'm going to start to worry. Happy is great....too happy is not.
Monday, June 11, 2007
Meds & Plans so far...
So, we're on day 11 of phosp stay 3 and here's where we stand: the new pdoc think's M problems are caused by anxiety, so he started M on an SSRI (Celexa) a week ago (last Tuesday). My concern with an SSRI is that he'll go manic, but I've got my fingers crossed that it's really just anxiety like the good Dr thinks. He was supposed to come off of the Strattera, but for some reason, he's still taking it. No idea why?
We've been fighting for psych testing (specifically with a Neuropsych) since admit #1 back in March, but the problem is that the Hospital doesn't do testing because Insurance pays them under one big balloon payment and they don't have anyone on staff that does testing and we can't get M stable and out of the phosp long enough to do any testing outside of the hosp! So, after much complaining, they have asked our Insurance company if they would pay to bring in a Neuropsych while M is inpatient and they said YES! Now, the one thing we are crossing our fingers on is waiting to hear that the Neuropsych has agreed to come in and do the testing.
As far as discharge plans go, we don't have anything set yet because we don't yet have any discharge date in mind. The big battle however, is getting M to school...his new school. So, the tentative discharge plan is that M will be discharged early in the AM to leave directly for school so that staff can assist in prepping him to be physically and mentally ready to go so he's not raging at home. Then, if he loses it, he is to be immediately re-admitted. The downside to this plan is that he is currently admitted under our old insurance plan ($250 co-pay) and will be re-admitted under our new insurance which is a 10% co-pay! YIKES!
Current Meds:
Strattera: 25 mg bid
Celexa: 10 mg at 8 am
Seroquel: 100 mg at 8 am
150 mg at 8 pm
PRN's:
Benadryl: 25 mg for agitation or insomnia
MiraLax: 17 g packet for constipation
Tylenol: 325 mg for headache
We've been fighting for psych testing (specifically with a Neuropsych) since admit #1 back in March, but the problem is that the Hospital doesn't do testing because Insurance pays them under one big balloon payment and they don't have anyone on staff that does testing and we can't get M stable and out of the phosp long enough to do any testing outside of the hosp! So, after much complaining, they have asked our Insurance company if they would pay to bring in a Neuropsych while M is inpatient and they said YES! Now, the one thing we are crossing our fingers on is waiting to hear that the Neuropsych has agreed to come in and do the testing.
As far as discharge plans go, we don't have anything set yet because we don't yet have any discharge date in mind. The big battle however, is getting M to school...his new school. So, the tentative discharge plan is that M will be discharged early in the AM to leave directly for school so that staff can assist in prepping him to be physically and mentally ready to go so he's not raging at home. Then, if he loses it, he is to be immediately re-admitted. The downside to this plan is that he is currently admitted under our old insurance plan ($250 co-pay) and will be re-admitted under our new insurance which is a 10% co-pay! YIKES!
Current Meds:
Strattera: 25 mg bid
Celexa: 10 mg at 8 am
Seroquel: 100 mg at 8 am
150 mg at 8 pm
PRN's:
Benadryl: 25 mg for agitation or insomnia
MiraLax: 17 g packet for constipation
Tylenol: 325 mg for headache
Thursday, May 31, 2007
Phosp- 3rd Admit
Ah yes...it was a beautiful day. After refusing to get out of bed for school, M worked himself up to a 3 hr mini-rage where he talked to himself and threw a few things in his room. He went on for about an hour about how so-and-so said if he got something for him, he'd be his friend, so he did and then he wasn't his friend and it wasn't fair! and then he'd scream and throw something...then he's start all over with something similar about how somebody said something, he told the teacher and HE got in trouble for something someone else did....over and over he went on like this for an hour! He finally calmed down and came down stairs, got dressed and took a nap on the couch. I woke him to eat lunch before his pdoc appt and he refused lunch. I had to physically drag him out the car for his appt. He raged for an hour in the dr's office where I had to restrain him to keep him there (I have several nail marks and bruises) and then after hiding in the office building for 15 minutes, I found him and we left. Then he wouldn't get in the back seat of the car, he sat in the front seat. I explained that it's against the law for me to drive with him in the front seat and he just stayed strapped in and clung to the seat belt. So, I eventually called 911 for a medical transport. The ambulance came and he started scratching and biting everyone and they had to restrain him because he kept unbuckling the safety belts on the stretcher. The entire 45 minute ride he kept screaming "I'm going to kill you! Let me go, I'm going to kill you mommy! I hate you all, I'm going to KILL YOU!" and other similar statements. When we arrived at the hospital, we were greeted by 4 security officers and it took 6 or 7 people to strap him down to the bed in the ER. Then, it took 2 shots of Ativan (they were about to give him a 3rd shot) and about 4-5 hours for him to calm down. They ended up re-admitting him.
This time around he has a new Social Worker and new Psychiatrist assigned to him, so he has a new set of eyes, which is good. Third time's a charm, right?
This time around he has a new Social Worker and new Psychiatrist assigned to him, so he has a new set of eyes, which is good. Third time's a charm, right?
First day of School- Off to a Good Start (note: sarcasm)
I never received a crucial phone call I was supposed to get from the BOE regarding the bus p/u time or the back-up plan should M refuse to go to school, so I planned my morning as best I could with little to no information. I set the alarm for 7:10 am, hoping that would give me enough time to get M up, out of bed, and ready before the bus showed up...IF he would even go.
Unfortunately, M's grandmother (my mother) had made a deal with M...a bribe if you will, that if he was "FEELING BETTER" (crucial words) and went to school today, she'd allow him to sleep over Saturday night and they'd go to Chuck E Cheese's. Without being aware of it (though I was fully aware the moment she said it), she gave M and instant out, and he knew it as he smiled and promised to go to school today, while in the back of his head he was saying, "if I'm feeling better."
Of course, low and behold, M is still feeling "sick" this morning and can not go to school. Big surprise. He's also refusing to take his meds, which is only going to make him sicker and more oppositional. So, he's laying in his bed screaming and working himself up to a rage. The only Seroquel he's had in over 36 hrs is his 100 mg dose last night.
We have a pdoc appt scheduled for 2:45 pm today. It should be fun trying to get M dressed and out the door to that after missing school, raging, and off his meds! And with our 3 yr old in tow nonetheless! Grant me the serenity...
Unfortunately, M's grandmother (my mother) had made a deal with M...a bribe if you will, that if he was "FEELING BETTER" (crucial words) and went to school today, she'd allow him to sleep over Saturday night and they'd go to Chuck E Cheese's. Without being aware of it (though I was fully aware the moment she said it), she gave M and instant out, and he knew it as he smiled and promised to go to school today, while in the back of his head he was saying, "if I'm feeling better."
Of course, low and behold, M is still feeling "sick" this morning and can not go to school. Big surprise. He's also refusing to take his meds, which is only going to make him sicker and more oppositional. So, he's laying in his bed screaming and working himself up to a rage. The only Seroquel he's had in over 36 hrs is his 100 mg dose last night.
We have a pdoc appt scheduled for 2:45 pm today. It should be fun trying to get M dressed and out the door to that after missing school, raging, and off his meds! And with our 3 yr old in tow nonetheless! Grant me the serenity...
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