Looking for advice for adolescent recently diagnosed

[Sabriel]

Our daughter (early teens) has progressed in the past 6 months from feeling she was being watched to hearing whispers to hearing voices telling her to harm herself. She's been in an adolescent psych unit twice in three months (just got back from four days last week).

I'm looking for some advice from folks who've been there themselves or who have a family member in this situation.

--Would she benefit from a teen support group? She hasn't been much of a social person or joiner in the past, but....
--What resources or Web sites have you found useful or supportive?
--How do we support someone who realizes the implications of what's happening to her? She's very bright and well-read, so she knows the stats and long-term issues associated with the drugs she's taking and the continuous care she'll require.

Anything you'd like to share would be helpful. It's all completely new and overwhelming. And scary for everyone.

In case you have drug advice, her psychiatrist just took her off risperidol and put her on 100 mg. of ziprasidone.

Thank you, in advance.

[Tobin S.]

1. Ziprasidone has been a miracle drug for me.

I've been taking it for ten years and I haven't had any serious issues. It has completely controlled my psychosis with minimal side effects. The only distress I had with it is that I had a problem with bladder control a couple of times when sleeping when I first started taking it. But that side effect went away and it's been nothing but progress since then.

The main thing you have to be careful about with ziprasidone is if you have a rare heart abnormality the drug can exacerbate that. But for the vast majority of people that is not an issue.

I have Bipolar I and I was suffering from the same type of symptom that your daughter has been. I started hearing whispers and I spent a lot of time focusing on that trying to figure out what they were saying. I was absorbed in it. Then the voices became louder and more discernible. It was a hellish experience.

I became ill when I was 20 and suffered greatly until I was 30. That's when I finally started to get the proper treatment. I take ziprasidone as well as lithium and bupropion. Like I said, I've been taking that stuff for ten years and it has done nothing but help me. I'm 40 now. I'm married and I have a good job. We are hoping to have a child. My life is normal now in almost every respect. I just have to take those meds twice a day and see a doctor once every three months. It's become routine and mundane. My symptoms are gone.

If you have more questions, fire away. Also, feel free to send me a PM.

[Sabriel]

7. Thanks, Tobin S.

It helps to read your story and know that it's not necessarily as bleak as it seemed the past couple of months.

Although the doctors have avoided putting any label on her, I've often thought for years that she was bipolar. It's not hard to see. So, we'll probably have to deal with that one day as well.

I appreciate the post. You have no idea what an impact it had.

[LiberalEsto]

2. Try NAMI

http://www.nami.org/

National Alliance on Mental Illness

They have classes, support groups and much more

[Sabriel]

8. I thought of that, but...

We're in a relatively small city (about 60,000). There's a good chance she'd run into a fellow student at the teen meeting they hold each week. She's willing to go, but the idea of sitting in the same meeting as another classmate is problematic.

Maybe later this year, when we've all come to grips with the whole thing.

The NAMI site is excellent, though. Really helpful.

[fizzgig]

3. i don't have any advice

but good luck to your daughter and your family

[momto3]

4. I have been dealing with a similar issue with my daughter.

My daughter started hearing voices when she was 10, a little over 3 years ago. She was subsequently diagnosed as having bipolar I with psychosis.

I completely agree with the poster above that suggested NAMI. They have a wealth of information and may have support groups in your area for your daughter as well as the rest of your family.

We were told that the most difficult time would be the teen years due to the constant changing of hormones and growth. This has been true. She has been on 8 different medicine cocktails thus far. Some work well for awhile and suddenly stop, others worked well with horrific side effects and others had no effect at all. I have found it extremely useful to keep a diary of the meds and their effects on her. A diary is also useful to keep track of mood changes or relapses. You may find that they are cyclical which allows you to prepare in advance.

Please remember to take care of yourself as well. This was a hard lesson for my husband and I to learn. Counseling and support groups for your daughter are important, but we have found counseling for us to be invaluable as well. It is always good to know that you are not alone.

If you would like more details, please PM me. I am in no ways an expert, but am always willing,to share my experiences.

[BeHereNow]

6. +1000

Check out the Julie Fast web site.
Her books and newsletters have made all the difference in the world to our family.
Hugs to you-
I've been walking this road for six years now, and as a mom, I know your pain
and feeling of powerlessness.

All you can do is take care of yourself and make every medical solution possible to your child.

My daughter refuses to rake ANY medication, including the fish oil that was recommend by our doctor,
which studies have shown actually HEALS the brain.

Sigh...
PM me with your number if you want to talk.

BHN

[Sabriel]

10. BHN, I appreciate the response

At this point, she's OK with taking the drugs, but I can see already that she'll most likely refuse them one day and try managing without. She's very, very bright, so the way the meds slow down her thinking and affect her physically is as bad as the events that led her to take them, I think.

[Sabriel]

9. Another person also suggested a diary

I should start one, but everything's been so overwhelming lately that I avoided it.

And I'm not a diary-keeper. Gah. I guess I am now.

Thanks for the response! It helps a lot to know that others have dealt with a similar situation and are still able to post coherently.

[BeHereNow]

5. As a Mom, can I give you the best advice I have ever been given?

YOU have NO control over the illness, OTHER than to make medication, doctors etc...
available to her. If you do not take care of yourself, you are no help to her.

My daughter was diagnosed 6 years ago with BP1.
She too, went through a period of hearing voices.
It is imperative that your daughter stay away from drugs- other than those prescribed
by a qualified doctor.

Lithium was the magic bullet for my daughter, but she refuses to take it, and as a result
I now have a fractured rib.

I have continued to store bottles of Lithium, should she decide to take it again.

I recommend the Julie Fast web site for your edification.

http:www.bipolarhappens.com

Thank the heavens for the ACA- it provided insurance to our child until she turned 26
in December. Now we can not find an insurance company anywhere, due to her records
as having a "pre-existing" medical condition.

If you want to talk- PM me with your number.

Mopinko is also an excellent person to talk with, BTW-

Hugs to you, and remember to take care of yourself.
Otherwise, you will be no help to your child.

XO~ BHN

[Sabriel]

11. I'm sure you remember what it was like at first

It's like being physically punched. All those years of breastfeeding, making sure she had a bike helmet, making the perfect meal (OK, almost perfect...), and now this. It's still in the nightmare phase, even after three months of in-patient and out-patient treatment.

I know we'll all cope eventually, but right now, it seems like a Movie of the Week.

Thank you for the post!