update on us -- psychosis, Clozaril for older difficult child

Discussion in 'General Parenting' started by barneysmom, Jul 16, 2010.

  1. barneysmom

    barneysmom Member

    Hello all,

    I wanted to write and update.

    My gfg16 had been in an unlocked juvie after his third assault on our family -- first his little bro, then me, then his dad. He has been to the psychiatric hospital 5x from June 2009 to Jan 2010. Each time he was discharged aggressive and unstable, and we were told to access CMH. That's pretty stressful when we're dealing with a violent kid, and getting services from CMH takes awhile.

    Anyway he became psychotic in juvie and spent 70 days in a psychiatric hospital locally, then transferred to a residential facility which is not long-term, but just until the kid gets stable (it could be four months or so). The staff specialize in "tough" cases and are dedicated clinicians. It's the best place he could be and we're very satisfied with it. It's through CMH. I had to hire an outside consultant and call our state representative's office to get him there. The state representative's office was extremely helpful in bringing our case to CMH's attention.

    He's been there since mid-June. The diagnosis they gave us is schizophrenia, and also on the spectrum -- not sure whether AS or Pervasive Developmental Disorder (PDD)-not otherwise specified, that hasn't been clarified yet. He's on a pretty high dose of Clozaril and I'm not sure what other medications -- I mean, I know what they are, we signed all the consents, but I can't think of them right now.

    His psychosis has had good results from the Clozaril but last time we visited for family therapy he was pretty dysregulated when he saw us. Meaning he blew up. We have had some good visits, but when we start talking in therapy about things that won't go his way when/if he gets home (like no BB guns/gun games on PS) he can't handle it, and explodes.

    Meanwhile gfg13 is slowly recovering from the trauma of his big brother being gone, and the violence which was the norm at our house. His recovery is progressing faster now -- he spends a lot of time at the community pool instead of isolating at home, and is on a sleep-over there tonight, bonfire, smores etc. He had some encopresis going for awhile there, but has recovered.

    husband and I are barely making it but we are taking care of ourselves -- amazing how much sleep we need after all this trauma, just to be able to function. We drive there once a week for family therapy -- 2.5 hours each way which is exhausting, but we know we are lucky it's so close.

    I'm hanging in there. I'm glad I have you guys -- reading here always gives me a boost. Life is normalizing a little! We have a home-based service which is required when your kid goes to this particular residential facility, mostly to coordinate services when the kid is discharged. It's kind of weird when gfg16 isn't home, but the case manager is helping us with getting our lives back into a healthy routine and recovering from the trauma.

    Psychosis is really hard to handle for the psychotic person (as many of you well know) , and for the family as well. We have a family meeting with the CM for two hours a week which is great because I would never get husband and gfg13 to sit down for a family meeting longer than ten minutes! And we're finding it gives the three of us a sense of solidarity, and the fact that we include gfg16 in our discussions makes his situation less scary.

    Best to all and hugs
    Last edited: Jul 16, 2010
  2. Fran

    Fran Former desparate mom

    barney'smom, I responded to your post but it seems to have disappeared.
    Basically I said, Residential Treatment Center (RTC) sounds like the both worlds. Your difficult child has structure, supervision, and life skills and your family gets to heal, rest and plan for the future.
    Hugs to younger son. difficult child's are brutal on siblings.
    He is where he should be and hopefully, you will have a non violent teen when he comes home.
    Thanks for the update.
  3. susiestar

    susiestar Roll With It

    I am sorry that he is fighting such a severe problem. The Residential Treatment Center (RTC) and other services really do sound like the best of both worlds. Bless your state rep for being so helpful.

    It is great to hear that easy child is beginning to heal. Fran is right, the sibs really have a tough time. The CMH program seems wonderful. Hopefully you will get a nonviolent teen when/if he is able to safely return home, that the right medications will be found quickly and that long term medication compliance will never be a problem.

    Delusions are so scary for both the ill person and the family. Be sure to take good care of yourself, even if it means that sometimes one of you stays home from a therapy session while the other one goes. Running yourself down will not help anything.

  4. I'm sending you gentle hugs Barney's Mom. It sounds like you have difficult child where he needs to be. I can't imagine what it has been like to get him there. When Clozaril works, it is nothing short of a miracle drug. They began using it years ago at one of my referral facilities and I could not believe the transformation it created in some of my clients. Hang in there, and do take care of yourself, like susiestar suggested.

  5. TerryJ2

    TerryJ2 Well-Known Member

    Wow! You've had a lot going on. I know what you mean by needed lots of sleep. It takes a lot out of you.
    I am sorry that difficult child's issues are so severe. Wow. You've done a great job, and it sounds like he's in a good place right now.
    I am very, very happy to see that his brother is healing and growing.
    Many, many hugs. Thank you for coming back here! We miss you.
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I agree with the others that it sounds like he is where he needs to be. You must be absolutely exhausted. It's good to hear there is healing going on. I'll be keeping your difficult child and your family in my prayers.
    by the way, difficult child is on the same medication. It seems to be helping some but I'm not sure if his dosage is right yet. We have to go up slowly.
    Sending the gentlest of hugs your way.
  7. barneysmom

    barneysmom Member

    Thank you Sharon. "Gentlest of hugs" -- I am imagining what that feels like right now. Good.
  8. timer lady

    timer lady Queen of Hearts

    Barney'sMom, I so remember those days with my wm (heck & with kt). wm spent 3 months in phospital before entering Residential Treatment Center (RTC). The gentlest of hugs are being sent to you & yours. Use this time for healing. You & husband need the time together. Your youngest needs to be reassured that he is safe & will be kept safe.

    The worst was keeping kt connected long enough to understand that wm was not coming home any time soon & that she was safe ~ physically, emotionally & mentally from wm's rages & the like. husband & I slowly began the healing process.

    I truly believe I lost husband to the ongoing stress of caring for the tweedles; please take care of yourselves as a couple. You've gotten difficult child treatment & he's in a safe secure environment so you have some breathing space.
  9. barneysmom

    barneysmom Member

    Linda, I've been following your posts although I've been too overwhelmed to post myself. I've read about your husband -- my condolences.

    I believe what you just said about your husband -- I could feel the truth in it. Thank you for your fearlessness in saying that. Now I will have to really take your advice (on caring for ourselves as a couple) to heart -- I wouldn't dream of ignoring such hard-won advice from you Linda. You really are the Queen of Hearts.

    Some days I think I'm going to have a heart attack (not actual symptoms, just the accumulation of tension). I've been talking with husband lately about how we must get enough rest, vitamins, nutrition etc. and even have some fun. We took gfg13 to a movie yesterday and it was Fun! Kind of disconcerting, even disorienting, to see how much fun we had not been having.

    Your watercolors are beautiful (I've seen them when you use them as avatars).
  10. barneysmom

    barneysmom Member

    Valerie, thank you for your encouragement and especially about the Clozaril. There is kind of a mythology around Clozaril that makes it kind of scary. It still seems like a "new" drug to me though it came out in the 90's.

    Terry -- thanks for the welcome back. With one difficult child gone, I seem to be posting a lot. It's all kind of spilling out. For awhile I thought it was just to horrible to talk about. But now I think I was wrong about that. I could have talked about it here.

    susie and fran -- thank you for the encouragement about Residential Treatment Center (RTC), and especially for validation about the sib issue. No one else really gets how profoundly the sib is affected -- and then the impact of our (the parents) additional responsibility and accountablity for the sib is quite overwhelming! I kind thought things would just be peaceful immediately after gfg17 left. Not! It has definitely been a process. Getting there though.
    Last edited: Jul 18, 2010
  11. totoro

    totoro Mom? What's a GFG?

    I can't imagine but I am glad that the clozaril is helping. I can't remember at this point if this one that they had K on in her psychiatric hospital stay... blurry Mom brain! LOL
    Her delusional/psychotic times at this point are only lasting hours or short bursts. She cycles pretty rapidly, which is nice, if you can say that about our kids...
    We can give her a Seroquel and it kicks it's butt pretty quickly or knocks it down a bit. She is still small and young, I do not look forward to the teens.

    I hope progress continues for all of you.
  12. barneysmom

    barneysmom Member

    Hi totoro,

    Thank you for writing. It is good to hear that the delusional/psychotic times are short bursts only. My son sounds a lot like your K. I can see how the anxiety, ADHD, Sensory Integration Disorder (SID), NLD and High-Functioning Autism (HFA) make it so hard for them to stay in touch with reality.

    We didn't have the head start that you have with K -- we've always been clueless about what's going on with gfg16 -- he's had so many labels we've never been able to pin it down. We had a family session today and are looking more closely at the autistic issues along with the mood disorder. I feel like tiny pieces are coming together.

    I think you will be able to shield your K. For example, we didn't know what was up with M (after countles medications, t and psychiatrists, phosps) and he ended up in juvie (violent) where he became psychotic. I think somehow that could have been prevented. I'm also reading about NonVerbal Learning Disorder (NVLD) for him too.

    However in my heart I believe that if he hadn't got so sick, he wouldn't be getting the help he needs.

    I and others are blazing a trail for you for the teen years! You will be ready. I was taken completely by surprise with this psychosis.

    Getting a bit easier as time marches (drags) on.
  13. barneysmom

    barneysmom Member

    Hello all.

    Our home-based CM was here today (she's been coming weekly for about a month -- if a kid goes to this particular Residential Treatment Center (RTC), you have to have home-based services along with it -- which is good). She said based on all her assessments she's going to recommend a step-down residential in our town when 17 is discharged from current Residential Treatment Center (RTC). The current Residential Treatment Center (RTC) is pretty short-term, with emphasis on medications, diagnosis -- it's a teaching hospital with lots of medication students, etc. difficult child has been there a month. Also they have a holistic emphasis -- difficult child told us he swam 20 laps the other day.

    Anyway we were thrilled to hear about a step-down plan -- usually it's hustle him home and down the tubes we go. It's a nice facility here in town which wasn't chosen for difficult child at the get-go because it's more of a behavioral emphasis, and difficult child needed the clinical aspect when environment when he was so sick. They said they would update his neuro-psychiatric while he is there, to assist with discharge planning (school, etc). IEP is next week.

    Then when he is ready to come home, we will have home-based already in place. Then we will be able to have family therapy without driving 2 1/2 hours, and home visits for the weekend, etc. And I took Linda's advice and really pushed for the respite for me and husband.

    i think I'm dreaming! I think the mental health community is finally realizing how sick this kid is -- and how vulnerable. And us too. So I have hope. Wow!

    Regarding payment -- we found out difficult child is eligible for medicaid if he is out of the home for 30 days. He was 70 days in the local psychiatric hospital before the bureaucracy allowed him to go tho this Residential Treatment Center (RTC). So that counts. It's like a miracle. When/if he comes home permanently, we will have a huge chunk of co-pay. But it's great the Residential Treatment Center (RTC)'s should be paid for (unless SNAFU but I'll worry about that later).

    Last edited: Jul 27, 2010
  14. barneysmom

    barneysmom Member

    We got a diagnosis on GFG17 today -- schizoaffective disorder. This is pretty much what we thought, but I did enjoy being able to write "Psychosis not otherwise specified" for awhile in the diagnosis line. It is a difficult diagnosis for my little boy and I have to say I am getting teary and choked up as I type, and although we have been fortunate in getting him help this time around, I don't want him to have this burden, but that is his and our journey.

    Anyway, difficult child is doing very well. We visited today for family therapy and clinical update -- all favorable progress. We were able to take him out on a pass -- his first. We got him his first haircut and shave of 2010 -- between juvie, psychiatric hospital and residential, it just hasn't been possible. It was a pleasure to do this for him. The "Great Clips" was in a strip mall and he got to choose a spot for a quick dinner -- he had a choice between Mexican and a place called Cheeseburger Cheeseburger and he chose the later. Great burgers and he downed a huge banana shake.

    We'll need to keep a routine in place -- this Residential Treatment Center (RTC) is huge on physical exercise and our formerly sedentary difficult child is doing well in gym, and swimming a lot in the huge pool there. He's having a lot of successes -- we'll need to really keep those going in real life. I have hope.
  15. TerryJ2

    TerryJ2 Well-Known Member

    Barneysmom, I am so sorry that your son will have this lifelong issue, but as you pointed out, he will get help now. I know what you mean about being teary eyed. {hugs}
    I really like the phsycial activities that he's in ... they really help. That, and the routine.
    I'm sure he looks great with-his new haircut and shave. Sounds like you had a great visit.
    Best of luck!