Risperdal & Flovoxamine

[Guest guest]

Hi: I am only about two weeks into this new world. My daughter, 9 yrs old, is

now in treatment. We have her enrolled in a intense outpatient facility 5 dys

per wk. She is out of school and working with an entire team who deal with only

children. My daughter is now on Fluvoxamine and Respirdal. I am not convinced

that the Respirdal is doing anything more than keeping her sedated. She is a

petite little girl who looks drugged. She is on the smallest dose possible.

The psychiatrist said if we, her parents, do not give her the Respirdal with the

Fluvoxamine he will not treat her and she will have to leave the program. I

honestly do not like this man at all but the rest of the team -- those that

spend the most time with her daily -- are extraordinary people who have been

very helpful and work well with her. Has anyone ever heard of a doctor refusing

to treat a child if the parents didn't follow their exact advice? My thoughts

are putting your child into treatment is hard enough - giving up your rights to

make decisions you feel best for your child is unreasonable. Am I wrong here or

just naive? Also, I'm reading a lot about this Pandas. My daughters onset was

virtually overnight. We always new she had some OCD tendencies but once she

confessed she has been " checking " for over a year (without us even knowing it -

I have been blindsided by all of us, the not knowing as her mother)and she

cannot stop. She clearly sees this is a problem and is frustrated. She has

asked us to help her and of course we immediately did that. I have asked her

pediatrician to order blood-work to test for anything any everything that could

have possible triggered this onset. The doctor agreed but said really this

isn't something that can be found in blood work. How is it diagnosed? Does is

show up in blood work? What specifically should they be testing for? I don't

get to post often but I read this as often as possible so please don't be

offended if I don't respond right away. My time is so limited with driving her

almost 2 hrs to and from and staying in that area all day long. I am so

exhausted and much more frightened of where this all could lead. I just feel

lost-

[Guest guest]

Hi,

I'm sorry you are going through this.

I can understand your frustration about the treatment program. It sounds like a

great program to help your daughrter with the therapy she needs, but yet, if the

doctors are not willing to listen to you and work with you on medication

changes, I would consider pulling her out. Is she a difficult child with

behavioral challenges? If not, they certainly have no reason to keep her on the

Risperdal ( This med did the same thing to both of my kids) If the Fluvoxamine

is working , they should leave her on that alone. I would ask what their

reasoning is for the anti-psychotic.

There are no tests for diagnosis with PANDAS. If the child's titers are through

the roof and the child had a sudden onset, that is usually a good indicator of

PANDAS, but still it is not always the case.Dr. K asked me if my son gagged on

his food and was afraid of choking as part of his OCD, and he used to do that.

He said that is a huge symptom of PANDAS.

My son only had a few bouts of strep that we were aware of, but years later when

he had bloodwork done, it showed he did have strep with NO symptoms.If he is

around someone with it, he gets it and we don't even know it.

Just some quick thoughts. I have to run!

I wish you luck and Hugs!!

Judy

________________________________

To:

Sent: Thu, January 14, 2010 6:24:35 AM

Subject: Risperdal & Flovoxamine

 

Hi: I am only about two weeks into this new world. My daughter, 9 yrs old, is

now in treatment. We have her enrolled in a intense outpatient facility 5 dys

per wk. She is out of school and working with an entire team who deal with only

children. My daughter is now on Fluvoxamine and Respirdal. I am not convinced

that the Respirdal is doing anything more than keeping her sedated. She is a

petite little girl who looks drugged. She is on the smallest dose possible. The

psychiatrist said if we, her parents, do not give her the Respirdal with the

Fluvoxamine he will not treat her and she will have to leave the program. I

honestly do not like this man at all but the rest of the team -- those that

spend the most time with her daily -- are extraordinary people who have been

very helpful and work well with her. Has anyone ever heard of a doctor refusing

to treat a child if the parents didn't follow their exact advice? My thoughts

are putting your child into

treatment is hard enough - giving up your rights to make decisions you feel

best for your child is unreasonable. Am I wrong here or just naive? Also, I'm

reading a lot about this Pandas. My daughters onset was virtually overnight. We

always new she had some OCD tendencies but once she confessed she has been

" checking " for over a year (without us even knowing it - I have been blindsided

by all of us, the not knowing as her mother)and she cannot stop. She clearly

sees this is a problem and is frustrated. She has asked us to help her and of

course we immediately did that. I have asked her pediatrician to order

blood-work to test for anything any everything that could have possible

triggered this onset. The doctor agreed but said really this isn't something

that can be found in blood work. How is it diagnosed? Does is show up in blood

work? What specifically should they be testing for? I don't get to post often

but I read this as often as possible so please

don't be offended if I don't respond right away. My time is so li! mited wi th

driving her almost 2 hrs to and from and staying in that area all day long. I am

so exhausted and much more frightened of where this all could lead. I just feel

lost-

[Guest guest]

Hello Dema9

I know the feeling of helplessness and fear you are feeling in

the middle of this crisis. I know the frustration when doctors don't

seem to be listening and improvements are not coming fast enough.

Worry about the future. Worry that the decisions you make might not

be right. First, things will get better. People told me that and as

much as I wanted to believe it, I wondered " how do they know " ? You

are in crisis mode and your stress hormones and adrenaline are pumping

at an accelerated rate. You need to deep breathe and reach the

calmest state you are capable of reaching. You need to direct your

energy where it will do the most good. I make these recommendations

based on what I did right as well as what I did wrong.

The smartest thing I did was keep a written record of

everything. Conversations with the doctors and equally important

behaviors and interactions with my daughter. If you don't have a

written record of the weeks/months that have led up to this crisis,

try and do that now. Doctors rely heavily on your description of

behaviors. They cannot get a complete picture of your daughter based

on the minutes they observe her, especially since they are observing a

scared child in crisis.

One of your questions to this group is should you find a new

doctor that listens to your concerns? I could answer that both ways.

First, I should have gotten a " team " for my daughter earlier. On the

other hand, my doctor listened to me and chose a medication that I

suggested instead of the one that she chose as her first choice. I

was wrong and it took 6 weeks to adjust the dosage of " my medication "

to the point that the medical communities' protocol (slowly raising it

until maximum is reached before trying a different medication) agreed

that it wasn't working. 6 weeks of trauma for both my daughter and

myself. Many of the mistakes I made were due to my impatience with

the process and my need to be " involved " with the decisions.

So, perhaps you can accept that the doctor's belief in risperdol

is well founded. This doctor does not know how to communicate well

with parents so I would suggest that you talk to another member of the

team to see if they can adequately address your concerns. If they

have prescribed risperdol, it must be that they believe there is more

than typical OCD involved here. The best psychiatrist in Illinois

considers risperdol the drug of choice for mood disorders. If the

team can convince you that there is reason to believe your daughter

has some mood dysregulation, then you might want to give risperdol

time. The " drugging " effect should be temporary.

PANDAS is a possibility but that is still considered

" alternative medicine " and you probably won't get much support from

your medical team. You need to trust your team even as you question

them intensively. Use your energy to educate yourself and develop an

alternative plan that you can turn to if you loose confidence in

tradition medicine. This group will be very helpful. Lots of wisdom

and knowledge.

Dorelle

[Guest guest]

Doctors can and do refuse to treat if their prescribed care isn't followed -

even in medical situations. I believe that that should be a last resort and if

it isn't, he doesn't sound like a doctor who is wiling to work with you. That

is key when you're dealing with a child. Mt son is on a tiny dose of Seroquel.

When I tried to take him off, I saw some behaviors that made me start it again

for now. Larger doses made him just about psychotic as do other meds. Another

thing I noticed is that it takes a bit to really see the effect of the drug (a

few weeks). Perhaps it wouldn't be outrageous to decrease the dose of

risperdal. Relative high doses (doses high for the individual)can cause some of

the behaviors that you're trying to quell and it so then it becomes a vicious

cycle. Our psychiatrist is good in my opinion, but even he didn't realize that

there were such things as treatment emergent side effects with some drugs and it

took him a while to trust my instincts. Whenever he tries to sell something I

ask him why we're changing things, when can I expect results, what symptoms

should prompt me to call him, what are the other options.

I have been in the depths of things like you are now, and I know you feel

helpless. I think what helped us most was time and maturity and finding the

right help. Perhaps you can have a team member speak candidly on your behalf

with the doctor? They must see what you're saying too. Keep looking for

answers and follow your instincts. You really do know what's best though I know

it's scary when you can't find outside help.

Best wishes,

Bonnie

>

> Hi: I am only about two weeks into this new world. My daughter, 9 yrs old,

is now in treatment. We have her enrolled in a intense outpatient facility 5

dys per wk. She is out of school and working with an entire team who deal with

only children. My daughter is now on Fluvoxamine and Respirdal. I am not

convinced that the Respirdal is doing anything more than keeping her sedated.

She is a petite little girl who looks drugged. She is on the smallest dose

possible. The psychiatrist said if we, her parents, do not give her the

Respirdal with the Fluvoxamine he will not treat her and she will have to leave

the program. I honestly do not like this man at all but the rest of the team --

those that spend the most time with her daily -- are extraordinary people who

have been very helpful and work well with her. Has anyone ever heard of a

doctor refusing to treat a child if the parents didn't follow their exact

advice? My thoughts are putting your child into treatment is hard enough -

giving up your rights to make decisions you feel best for your child is

unreasonable. Am I wrong here or just naive? Also, I'm reading a lot about this

Pandas. My daughters onset was virtually overnight. We always new she had some

OCD tendencies but once she confessed she has been " checking " for over a year

(without us even knowing it - I have been blindsided by all of us, the not

knowing as her mother)and she cannot stop. She clearly sees this is a problem

and is frustrated. She has asked us to help her and of course we immediately

did that. I have asked her pediatrician to order blood-work to test for

anything any everything that could have possible triggered this onset. The

doctor agreed but said really this isn't something that can be found in blood

work. How is it diagnosed? Does is show up in blood work? What specifically

should they be testing for? I don't get to post often but I read this as often

as possible so please don't be offended if I don't respond right away. My time

is so limited with driving her almost 2 hrs to and from and staying in that area

all day long. I am so exhausted and much more frightened of where this all

could lead. I just feel lost-

>