Please read if you are just starting out...
We've had over 9 months of 3-5 hour rages about 3+ days a week plus moods and meltdowns in between the full blown rages.... The past 2 years have been pretty rough.
Well, my son started Abilify over one week ago. The first 4 days on 1mg - no change. Next started on 1mg in morning and 1mg at night on Monday. Today is Friday. We have not had one single meltdown in 5 full days. All of his reactions have been appropriate to the situations. He has not even been triggered by his sensory issues - he just mentions them and moves on. He stopped obsessively cleaning his glasses and has hardly chewed on his shirt at all. We were in the emergency room early last week due to a rage. Then on last Sunday at 2:30 am he woke up in a rage over his glasses and tried to grab a knife - that's how bad it was.
But we have had 5 normal days...the FIRST 5 straight normal days in a LONG time. Like, normal-normal. Not him trying super hard or anything, just completely, flawlessly normal.
AND we finally got a call back from the neuropsych office and are getting in within a month from now, results in mid-August.
I just wanted to share this because I am so happy. I am still really tense - just waiting every minute, every hour, for the meltdown or rage..but it hasn't come yet. It will take me a while to be able to relax, when I know this change is for real, maybe after a month or more.
I have physically aged about 10 year in the past 2 years. It has been so hard.
I know that he is not cured. I know that the medication may need to be adjusted. I know that this may not be a long-term change...but 5 whole days is quite a HUGE success for us.
We actually made 4 stops this week - got gas, stopped at indoor ATM, Village Hall to get a sticker, and Walgreens. I know it sounds like nothing, but we have not even been able to do things like this in a long time. We have been completely isolated other than work/daycamp. I have had to do everything I need to do on my lunch hour because my son is usually ready to explode by the time I pick him up from summer camp and we must go straight home or pay dearly for it (e.g. having rage in parking lot and damaging someone's car...hitting self on head and screaming at top of lungs while leaving a store).
I am having visions of having a near-normal life like other people I know. Going to the store, going outside, walks, parks, friends, sleep....we have been so isolated for so long.
I just hope tomorrow is like today, or at least not like before.
If you are just starting out, hang in there. It may be a long haul. We still have a long haul ahead of us, but we will get there and so will you.
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BJ - 31 yo single mom - hypothyroid, hypoglycemia, Levothyroxine
Eli - 9 years old, Mood Disorder NOS (BP suggested), highly superior IQ, Sensory Disorder, Just started Abilify, working dose up slowly
Kat - 16 months old, minor skeletal dysplasia, suspected growth hormone deficiency, critically low weight, special diet
BJ, thank you for sharing your story. I think many of us can relate to that immense relief that we feel when we have a 'normal' day or even hour. And at the same time we are almost afraid to say anything for fear of jinxing our good fortune. But, as you point out, just being able to do simple things like going to the store, running errands, having dinner as a family . . . we appreciate this gifts SO much because of what we've been through. We get to experience profound joy every day for things that others just take for granted.
I hope that you continue to have more good days, and that Eli is enjoying stability as much as you are.
Warmly,
Nanci
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Nanci Schiman, MSW
CABF Program Manager
nschiman@bpkids.org
WI Mom to:
S - 17; BP2, Lamictal, Lithobid, Synthroid, Seroquel
A- 15 Zoloft
L - 13; BP NOS, Trileptal, Amantadine, Lithobid, Synthroid, Lexapro, Niacinimide, Klonopin
DH - D, 50
I think I just re:d you in our group--- Yeah!
Heather
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Heather (40) Cymbalta; Seroquel XR
DS (9) BP, ADD, IED (TBD?) 1800 mg Trileptal; 10 mg Abilify; therapeutic level of Keppra; Clonidine for sleep, trying Home School in the fall; DH (39); DD (7); DS (3); Dog
Wow - can I relate. I just said to someone the other day that I long for the day that I can run an errand or two with my son without being tormented. So happy for you.
That's a great thing. I hope things continue to get better. I used to think it was just my kid who acted so weird/wild and attention seeking when we were outside the house. I'm learning more and more about this terrible disease.
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June from NJ
DGS13: b/p; ADHD; Depakote 750mg; seroquel 60mg
DGS12: ADHD; vyvanse 40mg
lovey:dog 6yrs
cat: cat 15 yrs
self: cymbalta; busbar; avapro
BJ: That is great to hear. I'm new here. I came on tonight to vent, but I haven't figured out how to post or to find my Support Group (it's #12). I found your post from your subject heading and I'm glad I read it. I hope stability has continued in the few weeks since you posted.
It's been years since my daughter has gone 5 straight days without a rage. In fact, I can't remember her ever being stable for 5 straight days.
Edrex
--
dad to:
Rebel (daughter), 9, not stable (dr has not officially diagnosed her as BP yet. In two weeks, she will be assessed at a clinic that specializes in childhood BP), Tenex 1mg (was on Zoloft 25 mg for 11 days and the bottom dropped out so we stopped that)/ melatonin (for sleep). Will start Omega-3 shortly. Entering 4th grade, gifted program; and
Linus, 7, strong-willed, anxious, currently well-controlled asthma
Eliot, 7, peacemaker, eager to please, God's most patient creature (oh, yeah, and dyslexic, but doing amazingly well)
married to:
Jess, best partner in the world (despite passionate disagreements), her severe depression is currently under control (when she was hospitalized a year ago, I thought I'd lost her for good. But finding the right dosage has been nothing short of miraculous.) Zoloft, Wellbutrin (xanax and sleep meds as needed)
dorito, dog (15), condroitin, knees are bad, mood is great
Where is the clinic that specializes in pediatri bipolar?
--
Suzi
dh - Shawn
dd - Tarryn 9 years old
ds - Eli 5 years old-- Sensory processing disorder, Bi-polar I Mania, mood disorder n.o.s. on Risperadone MTabs 1.5 mg in the a.m. and 0.5 mg in the p.m. (wrapped in cotton candy :))
Charlotte, NC
Hi...try to go to Packard Children's Hosital at Stanford- Palo Alto. They have some pdoc spesialized in BP.
Good Luck
vivi, 46yrs
mom to ds, 18yrs, BP1, Bupropion SR 300mg, Propanolol 20mg, Valproic Acid 500mg, Seroquel XR 400mg, Seroquel Regular 200mg, Lamictal 100mg, Nordic O3 1o00mg, Vit B, Volic acid, Vit E
Congratulations! That is definitely a victory to celebrate BJ. I know the feeling. My daughter is unstable right now and I'm praying for the return to semi normalcy that we once had a few years ago. thank you for sharing your story. It makes me feel less alone and very blessed in so many ways.
Chanda
Chanda. single mother of 3
daughter (8) dx @ 5: BP, ADHD, ODD, PTSD, Intermittent Explosive Disorder, Impulse Control Disorder, Anxiety Disorder w/ Insomnia.
son (14) dx @ 13: dysthymia, anxiety
son (3) dx @ 3: anxiety
Ohio
Edrex,
The above tab says connect, if you scroll over it it gives a drop down, click on supoort group, then scroll throught he groups till you find yours. Hope that helps.
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Gerri - Mom of 3 wonderful children...that sometimes needs a little help along the way!
T 6.5,gifted with no dx pdoc says 6.5 is to young but will treat the symptoms -...Meds are: pms-risperidone liquid - 1mg/ml @ a dosage of 0.125 ml x2 daily can do 3 doses if needed. Strattera had irritablity and his head was buzzy/bad disconitnued 8/2/10.
apo-benztropin 2mg @ 1/2 tablet as needed for muscle cramps/ spasm (rare side effect of the Risperidone - so far haven't used!)
M 8.5, tired of putting up with T, and my musical whiz kid -working at school to have her designated as gifted.
S 14 dramatic arts next year in HS RAP program, typical teenager, tired of putting up
with T's crap. Is happy he is old enough to get out of the house, when it gets bad.
Sooooo glad to hear! I remember the sheer dread of taking my children anywhere :( Now, there is some measure that (at least 1:1) they will manage without a meltdown of some sort, at least untill we get back home. That of course is touch-n-go...
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Melody Altamura
Mom of three children; dd-9, ds-8, dd-3.
We're in upstate NY and both school agers are attending a public charter school.
Me- ADD, PTSD, Anxiety: Methylin, Zoloft, Fish oil & various vitamins
The two oldest have BP diagnosis.
DS- BPD, ADD, PTSD, Anxiety: Risperdal, Adderall, Zoloft, Fish oil, Vitamin D, B-12
DD- BPD, ADHD, Anxiety: Risperdal, Adderall, Zoloft, B-12
Update? How has it been since July 2, 2010?
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Dana (me), 34, dx: depression rx: Prozac
Dad, 34, dx: bipolar I Rx: Lithium 900mg, Zoloft, Trazodone 150mg
Evan, 5, dx: Bipolar I, ADHD, ODD, OCD Rx: Abilify 7.5mg, Tegretol 100mg three times daily, Atarax 10mg, Clonidine 0.3mg
16yo brother - Depression
4yo twin brothers - "normal"
Hi, I am a grandmother that has been raising a granddaughter, now 10 for the past 3 and a half years. Her mom has her on weekends. We cannot seem to get her on medication that can keep her balanced. Right now she takes Geodon and it either puts her to sleep or keeps her up all night. She didn't sleep at all Friday night. Then she fell asleep at 2 in the afternoon and slept for 18 hours! She has been on 5 different meds. Nothing seems to be a good fit for her. Her mom and I are totally discouraged and extremely exhausted.
You have a lot of good questions. However, since this is the "Stories of Hope" forum, I'm afraid not many people will see your post and respond. I would suggest you re-post your question either on the General Forum or the Med. Forum.
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Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 16, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 15, BP,AS: Seroquel, Eskalith CR, inositol
B, 13 & H, 10
Married 17 years to DH, 50
FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
--I has been a long while since I have came onto this site. Things have not by any means been perfect. When I look back, I don't beleive they ever where perfect. But, they are so much better. A few bumps in the road, a couple of very large mountains to climb, but we are climbing them together. My son now 16, has been on his medications for a year. He has improved tremendesly. One bump in the road, was when the pharmacy we were using changed there generic brand. I didn't beleive it was a big deal, but boy was I wrong within 10 days he was getting suspended, cursing out t eachers, and stupid me didnt realize that it was because of the change in the generic brand. After a month of extremly bad behavior, the principal of his school called, he was suspened again the 4th time in 3 weeks. She said he was uncontrolable, I reminded her he was on meds and she said to me manybe they need to be changed. At that exact moment I realized that they were changed. Within two days I found a new pharmacy willing to order the meds from the pharmicutical company that we were getting his original meds from. And within 10 days I had my son back. My son said something to me, that forever changed they way I think about him being bipolar. He said mom, will I always get this angry. My heart broke. My sesative loving son really was trapped inside his own brain wanting so bad to get out and be the person he used to be.
Our children need us....more then the NORMAL child needs there parent......the rages are horrible.......beleive me I know...I have replaced every single thing in my house beacause of the rages......i have locked myself in my room, and made my own daughter leave my house.....it took till my son said those words to me to realize, that he was trapped inside himself. It is so sad.......but as long as we are there for them to make sure they take there medications, I beleive in my heart that our children will be saved.
I also beleive now that there are mountains to climb to make us and them realize that with the right meds, you can become stable. My son had been asking for months to get off his meds because he felt fine, but look what happened when all they did was change the brand. He now, comes in the kitchen and says its time for me to take my pills.............we have come a long way. I wish this for all of you..........its a bumpy road.......he will never be the same as he was......but he is now a new perfect in my eyes.........because my eyes are now wide open.
My prayers are with you all. Tina the mother of a very stable bipolar son whom I love with all my heart
tina
bp son 16 200mg lamical 10mg abilfity........and stable
daughter 13 healthy
husband of 23 years
me 44 heartbroken