On Tuesday, I spent 25 minutes talking with the girls therapist without either of them present. The therapist was pleased with how well grounded in reality GB is at this time. The therapist prescribed TLC when GB starts to get overwhelmed and suggested I never leave GB alone with Hope (Duh).
Hope is struggling and while the therapist was pleased Hope and I will get bonding time this weekend, she is more interested in how Hope reacts when it is just me and nobody to triangulate. We see the psychiatrist Monday and the therapist and I are both confident that the Abilify, while helping, does not keep Hope stable enough that we can work on her issues.
Besides the door alarm, we now have a lock box for all medication.
The girls both have CSE meetings on Monday afternoon. GB’s should be quick and easy. Hope’s will probably not come up with an appropriate IEP and will have to be tabled. Reading up on Wrightlaw’s Smart IEP goals.
Valentine Day has passed, but Hope continues to escalate. Since Hope sabotaged the Holter monitor again, we see the pediatric cardiologist on Wednesday and pray that he will clear her for meds. The school keeps inquiring about meds.
I have an intake worker coming from an intensive keep-the-child-in-the -home-program, hopefully to give more support until we can somewhat stabilize Hope on meds. We are NOT contemplating an out of home placement for her. However, her behavior warrants it and we are getting services based on that. Having more support in the house while I am
busy enjoying ORLANDO can’t be a bad thing for The Dad.
In case I have given anybody the impression that I always know what to do, I want to state here; there are many times when I am just guessing or am too T.I.R.E.D to be therapeutic. Today might be one of those days. I will know when Hope and GB get off the bus at 3:30.
Today is Friday. The week is almost over! My stitches are out, I can shower tomorrow, and I should be able to drive the five minutes to the CSE meeting on Monday. It seems like it has been a long time since I could put that much good news in one sentence 🙂
Hope’s day was no better yesterday and she started right up this morning. A part of me is happy that she chose this week to completely fall apart, because the CSE on Monday will be so much easier. All of me wishes I knew WHY she was falling apart.
I had a phone conference with GB’s teacher last night, preparing for her CSE on Monday. Mr. Teacher told me that GB seems much brighter (ie smarter) the last month. In his opinion, the Risperdal and Invega were blunting her cognitively. My mind shattered and I couldn’t get it working again before the 30 minute conference was over. She has been on these medications for over 4 1/2 years. They kept the Bipolar stable, and not having psychotic breaks is extremely important to me. I thought I always balanced the cost and benefits (especially for GB) of the psychotropic drugs. Yet, I never even considered cognitive impairment.
The new medication she is on, Loxapine, is an old anti-psychotic. The possible side effects are scary; movement disorders, tics, and Neuroleptic Malignant Syndrome (NMS). I monitor side effects so carefully… and I still missed the cognitive blunting. How can I be sure I am not missing anything this time? Scary.
GB is finally completely off Invega. In two weeks we will repeat her blood work, and, hopefully, her Prolactin level will be down. Today is the first day on the full dose of loxapine. I asked her teacher for feedback on the last couple of weeks of school. This is what I received:
Dear GB’s Mom,
We have noticed that GB is much more motivated and pleasant. She is engaged in her work and participates gladly in all activities. It has been a very pleasant and positive change.
|GB practices Tai Chi
Today I am grateful for medications that work and the professionals that help me find them.
GB is still dysregulated and manic. After trading a dozen emails back and forth, the psychiatrist and I agreed on a plan. I am not doing the happy dance. GB has been on every atypical antipsychotic currently available. The only two that stabilized her were risperdal and invega (A metabolite of risperdal). Unfortunately, Prolactin levels in the 40’s are not acceptable in an 8 year old girl. So we are left to try traditional anti psychotics. Tomorrow morning, GB starts on loxapine. It has black box warnings and we didn’t want to start her when we would have to rely on the school to monitor her.
Parenting special needs children is often like this- there is no good solution. You are stuck between a rock and a hard place and have to chose between two lousy options- in this case, no treatment or risky nasty side effects. I made my choice and I am praying that God will wrap His arms around her.
Bipolar is back. Not that it was ever really gone, but the Invega controlled the bipolar so well, the bipolar rarely made the radar screen. GB has only one volume at the moment- loudest. The pressured speech makes it hard to understand what she is trying to say. She is only completing one thought in four. The rest gets lost in the whirlwind of mania. She has no attention span. My biggest dread is that as the mania cycles higher and higher, she is more likely to experience psychotic breaks. Please pray for her… she doesn’t understand what is happening and is scared.
We took the girls to see the psychiatrist today. Both girls had high prolactin levels, but GB’s was through the roof again. We had to cut her Invega dose in half and now we pray that when it is tested again in three weeks, it will have gone down. If it doesn’t, she has to come off it. I am not sure that a 1/2 dose will maintain her stability. I dread having to take her off it completely.
Hope now carries a diagnosis of PTSD, along with RAD. The therapist at school is focusing on her trauma during their sessions. The outside therapist is not. The shrink told me today that I had to make sure that the outside therapist refocuses her therapy with Hope and keeps in contact with the school therapist. She said ideally we would just use the school therapist, but since this is the third school therapist in the year we have had Hope, we would need to keep the outside therapist for consistency.
So far today, I am doing well with my attitude Challenge. This afternoon we have to take the hour ride back to Little City because it is Therapy Tuesday. Hope struggles with therapy. I am going to be very mindful of my attitude.
To start, I want to make it clear that I am pro psychotropic drugs for any person, including children, that need them. GB has Bipolar I with psychotic features, as well as ASD and FASD. When she is stable on the right medication her joy is infectious. I know she will be on medication for the rest of her life and I am grateful that there are medications that work for her. My feeling about Hope and medication are different.
Hope is not Bipolar, ADHD, FASD, or ASD. Hope is RAD. Since all the other disorders were eliminated, one by one, by seeing various medical professionals, the goal has been to help Hope heal, and ultimately have her medication free. When she came to us, the first thing we eliminated was clonodine. That left us with .75 mg of Risperidal a day. We have gradually reduce that over the last four months and now Hope is only getting .25 mg a day. Until she spoke to her first adoptive family (AKA, The Texas Parents), she was doing OK on the reduced dose of Risperdal. Since then, she is back to long rages again.
Last night, at gymnastics, Hope raged in the waiting room. In the almost an hour it took for The Dad to get to us from work, I manged to restrain her and keep her from hurting anybody but me. When The Dad showed up to take over, I was bloody, my arms were swollen, and I had bruises all over. I gave her .5 mg Risperidal last night and it still took her 1 1/2 hours to go to sleep. The Dad wants to go back to Hope getting .25 mg after school and .5 mg Risperidal at night.
I understand his feelings. I look beat up today and looked even worse last night. BUT, before that phone call, we could contain Hope on .25 mg of Risperdal and were contemplating eliminating it completely. And that is my dilemma. Hope’s issued are caused by trauma- trauma she is not responsible for and should have never happened. GB will always be Bipolar I… Hope can heal and have healthy relationships. Medication is a given for GB. Medication for Hope appears to be about controlling her behavior.
I have never believed in using medication for the sole purpose of controlling a child’s behavior. So now there is a decision; to medicate or not. What is in Hope’s best interests?
The drug that made my day yesterday was Invega @1.5 mg. Paliperidone, the generic name for Invega, is the major active metabolite of risperidone. I have got to get GB off Zyprexa.
Today is the sixth consecutive day the girls have been home. Good things happened anyway. The Dad and I went to speak with the psychiatrist(word is too long. That’s why I usually call them shrinks) who did the psychiatric evaluation on Hope. It is now official- Hope is RAD. She may also be ADHD. We will be weaning her off the Risperdal over the next three months starting with the morning dose. Good luck Mrs. VY Teacher. After she is off the Risperdal, we will have her evaluated for ADHD. Doesn’t sound like something to celebrate. Ah, but there is more. Hope’s VCS (Very Competent Shrink) has agreed to treat GB, so instead of a 5 1/2 hour round trip to Manhattan, it will be a 2 hour round trip to the little city. She also said that the next generation of Risperdal is now available in a child’s dose. It doesn’t have the weight gain or the prolactin problems Risperdal does. YIPEEEE! She is sending me more information. I can actually dream of a stable GB again. Granted, she will still contend with FASD and ASD, but that will always be true. No more psychosis! If my body was working better, I would be dancing. Good thing this is a blog post- you can’t hear my tone deaf singing 🙂