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bgb67

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Freshman

Posts: 2

(01/13/09 08:06 AM)

"You have given us a precious soul to whom everything is new."

To all of you who welcomed me to this site. I know that if we have a child with a MI, that we all do "get it." My dd has been medicated for approx. 3 years, and is currently taking Abilify 5 mg. ( I have now asked kindly TWICE that her dosage be increased, as her weight has changed by 20+ lbs, but she remains on the same dosage), Vivanse 5 mg. and Guaficine 2x per evening, with occasional Melatonin given as needed for sleep. We implemented an IEP for her at the end of her 4th year in school, but I continue to "mainstream" her until she can no longer do what is asked. WE'RE THERE! And this single mom who works 2 jobs, 7 days a week to keep this boat afloat can no longer do her work for her. Of course, this results in WWIII around here, as her will to combat me becomes stronger. And magically, I turn into this horrible troll in her eyes when I don't do what is asked. My other 2 daughters are 16 and 6, and dd has done her best to terrorize them to the extent that sometimes....we ALL want to leave. I AM AN EMOTIONAL HOSTAGE to my beautiful, kind and amazing 11 year old daughter!

Lvnmomofbpkid

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Junior

Posts: 116

(01/13/09 08:24 AM)

bgb67 wrote:
To all of you who welcomed me to this site. I know that if we have a child with a MI, that we all do "get it." .....
......dd has done her best to terrorize them to the extent that sometimes....we ALL want to leave. I AM AN EMOTIONAL HOSTAGE to my beautiful, kind and amazing 11 year old daughter!

Amen to that! I am sure we have ALL been there and wanted to leave. Emotional hostage here! The worst part is you know the "honeymoon phase" exists, you know its coming, you know its here, you know it's going to end and yet somehow they always manage to end when you least expect it and draw a punch like you never imagined.

My hats off to you being a single mom, working two jobs and dealing with this. You truly are a VERY strong mom and woman! Please share more of your/your daughter's story. It sounds like you were able to get a dx early on. I fought for years to get my son's.

You mentioned you wanted your daughters Abilify increased because she has gained weight. I am intriqued. My son to is on Abilify and definately has gained weight. He also was always very thin. He at one point in time long before dx had to go to a Nutritionist because he had remained 29 pounds for 1 1/2 years. Was your daughter's weight always worrysome low?

Nicole - Sometimes ... Sleepless in Seattle
Dale age 14 - Diagnosed Bipolar w/schizophrenic tendencies & ADHD 2/2006 (after 8 long years of searching for a diagnosis) Meds: Abilify 15mg at night, Lexapro 10 mg at night
William age 11 - Healthy

Last Edited By: Lvnmomofbpkid 01/13/09 08:26 AM. Edited 1 times.

momofalexa

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Posts: 7431

(01/13/09 08:38 AM)

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"Life is a millstone - YOU decide if it's going to grind you down or polish you up."

Hi BG! Glad you made it over to Venting & Support. I love your Avatar. That is so cute!

Interesting about the Abilify. My dd has taken 5 mg then 10 mg then 15 mg, then she had rapid eye blinking, so back to 10 mg and that's where she has stayed for a while. She originally was on Risperdal and talk about weight gain. That one was so much worse! Unfortunately all these atypical antipsychotics seem to cause this weight gain. It's horribly frustrating! Geodon is not supposed to cause the gain but it has not proven to be as effective for the masses as the other atypicals...of course!

Oh do I know what you mean...emotional hostage is a good way to describe it. I always classify myself as feeling like I'm in P.O.W. camp. My dd at times has woken me up by screaming and yelling. It's like being a prisoner of war, seriously...very traumatic.

How is your dd sleeping? Will she ask for or take the Melatonin without a fuss?

Have you requested an IEP meeting or some accommodations on an informal basis, or a 504 Plan, yet? Or just still realizing that is where it's heading at this point?

I am also a single mom and yea it s*cks...no one to talk to or to confirm that we are doing our best. The good part is there is no one messing with what we are doing or criticizing us. It's a double edged sword but so exhausting either way!

How do you feel about your dd's other meds? Is she still rageful on the Abilify? Or is it more of the temper tantrum stuff our kids also do sometimes?

Please keep posting...looking forward to getting to know you better.

Heather
Mom of Alexa, (17 years old) Diagnosed BP-NOS (09/05), updated to BP II w/psychotic features (05/08)
Abilify (10 mg), Lamictal (200 mg), Provigil (100 mg - a.m. and 3 p.m.), Claritin, Klonipin (.5 mg) as needed
Topamax at night only (100 mg) Seroquel at night only (200mg)
Attends alternative high school (Ohio)

kristin3

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Posts: 2145

(01/13/09 10:56 AM)

Pharmacy
Maven

Abilify is supposed to cause less weight gain. Correct me if I am wrong but I think you mean you think she needs more than 5 mg because she has grown.

Since she is not fully in puberty yet, 5mg is probably the appropriate dose. She may need another mood stabilizer or something to go with it but higher doses are for much older people. Doses don't increase for aps like they do for stimulants like Ritalin. Puberty is the main factor, not body size.

As for the homework, I suggest that you have homework exempted for her on her IEP. If it is causing that much of a battle, then don't do it. Or set a timer for 20min and only do that much. I find that you have to go without for a few weeks and let the sparks die down first and then introduce a small amount.

My son is mainstream as well but he gets 1 period a day with the special ed teacher to catch up. I think a lot of schools like to push you straight to small class when they don't all need it. There are other options in between. Find out what they are. Maybe you can get an ed assistant in her class part time to help with written output. Ask for an OT assessment or speech and language assessment. She may also have executive function deficits as many of our kids do. She may need someone to help her chunk her work into manageable amounts so she doesn't freak out.

Bottom line though, she is going to continue to freak out until her meds are straightened out. She definitely needs more help there. I can relate.

Kristin

Alex 12-GAD, mood disorder, 37.5mg Effexor, 3mg Invega, 100mg Topamax BID

Matthew 9-ADHD, dysthymia, 300mg Wellbutrin XL

Lvnmomofbpkid

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Junior

Posts: 120

(01/13/09 11:29 AM)

My DS is not exempt from homework, but he does have a class at the end of the day that is designed to teach them how to organize themselves and gain learning strategies. They are also allowed to complete homework in that class with the assistance of the classroom aides, so that battle is not fought at home. It might be worth checking into to see if they have something similar or if they may have a study hall she can have to work on homework. I do suggest however if there is a study period for her that it is in her IEP that she have an aide to help her work through the material. It has made a huge difference with my son. Exemptions are even better to not having the fight, but I haven't had wonderful response from schools in regards to this. They are usually more open to providing a time and some assistance then saying your child doesn't have to do it. Especially as they enter into the higher education classes. My son isn't at Highschool yet but he will be next year and the closer he gets the more emphasized they are on homework requirements.

Nicole - Sometimes ... Sleepless in Seattle
Dale age 14 - Diagnosed Bipolar w/schizophrenic tendencies & ADHD 2/2006 (after 8 long years of searching for a diagnosis) Meds: Abilify 15mg at night, Lexapro 10 mg at night
William age 11 - Healthy

kristin3

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Senior

Posts: 2149

(01/13/09 11:34 AM)

Pharmacy
Maven

My oldest is in grade 7 and he didn't get homework for the first 7 weeks of school this year. It made a tremendous difference in his attitude about homework. He did eventually start getting some but she added it gradually so he accepted it. She kept reinforcing how hard he was working and how much he was getting done all by himself. He also now believes me when I say he will only do X min of homework. The battles are much reduced.

Ask if he can get a month off to get his mood and homework stress under control or approach it from the angle of reducing what is assigned for completion so he can get it done during that period. There is more here than the learning problems. He sounds stressed. That will only diminish one way. Take the pressure off. Then he will get more out of what he does learn.

Kristin

Alex 12-GAD, mood disorder, 37.5mg Effexor, 3mg Invega, 100mg Topamax BID

Matthew 9-ADHD, dysthymia, 300mg Wellbutrin XL

Lvnmomofbpkid

[-]

Junior

Posts: 121

(01/13/09 12:55 PM)

Here's a link of homework hope and a place to vote on less homework! I found it interesting.

http://today.msnbc.msn.com/id/28624181/?GT1=43001 or http://www.parenting.com/...-Less-Homework-Revolution

Other related links:

http://www.parenting.com/...The-Great-Homework-Debate

http://www.parenting.com/...omework-Revolution-Survey

http://www.parenting.com/...ions-for-Homework-Hassles

Nicole - Sometimes ... Sleepless in Seattle
Dale age 14 - Diagnosed Bipolar w/schizophrenic tendencies & ADHD 2/2006 (after 8 long years of searching for a diagnosis) Meds: Abilify 15mg at night, Lexapro 10 mg at night
William age 11 - Healthy

bgb67

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Freshman

Posts: 3

(01/13/09 06:10 PM)

"You have given us a precious soul to whom everything is new."

Just want to say thank you, again. You are all so kind and insightful! Oh, this road has been a long one - but I know that it is just the beginning in comparison to the whole scheme of life. Sometimes I look at her and feel so much love because she is much like that verse in the nursery rhyme we heard as children...."when she is good she is very, very good", but then the bottom drops out and I hear the rest of the verse, "when she was bad she was horrid." Period.

Yes, she does have an IEP - in fact I just contacted her school liason and teacher to schedule a meeting sooner than was planned so that we can modify her homework. I try very hard to be pro-active, and ahead of the "game," always trying to stay a step ahead of what I THINK is going to happen. My God, I am exhausted. I...am....exhausted.

As far as her meds are concerned, she has been on everything from Concerta, Metadate, Risperdal, Trileptal, Adderall, and the list goes on and on. She had a horrible reaction to the first "class" of meds, and we were actually advised (my ex-husband and I) to take her to California and have her seen at Dr. Amen's clinic. One psychiatrist actually suggested that she suffers from what is called "the ring of fire," and wants her to have a brain scan. And me, being the small town - raised totally traditionally Minnesota girl, am like, "what????" As far as the Abilify dosage goes, I do understand that it only increases with age and not weight, but she is pre-mentrual and obviously going through many changes in her body. Like I said earlier, I just want to be pro-active, and I think a slight increase in her Abilify dosage may just take care of the edge she seems to have all day long.

Lvnmomofbpkid

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Junior

Posts: 125

(01/14/09 02:43 AM)

My son is 14, soon to be 15. He is much smaller than the kids his age. His younger brother at age 11 is only about a half inch shorter and has many friends already taller and heavier than my DS. He to started with 5mg at age 12, which was bumped up to 7, then 10 and now he is at 15mg. He wasn't diagnosed until age 12 so I'm not sure how they look at the mg's in relation to age and size. I just know he has needed the bumps and when he did he was able to express it and got bumped. Along with it he had the Lexapro added to the mix and it has been bumped twice. I think the best you can do is have a pdoc that you trust, your daughter trusts and can be open with. One that listens to what is going on and works with you. That's not always easy to find. If you have that wonderful, if you don't go find it. Listen to what they have to say and work through it til something works! What works for one, may not work for the next. A good pdoc will be able to convey their reasoning and know that she may need something different. I hate the trial and error periods myself, but sometimes the closest distance .. is not a straight line, unfortunately.

Nicole - Sometimes ... Sleepless in Seattle
Dale age 14 - Diagnosed Bipolar w/schizophrenic tendencies & ADHD 2/2006 (after 8 long years of searching for a diagnosis) Meds: Abilify 15mg at night, Lexapro 10 mg at night
William age 11 - Healthy

moxleymama

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Senior

Posts: 326

(01/14/09 11:54 AM)

Nicole said:
I hate the trial and error periods myself, but sometimes the closest distance .. is not a straight line, unfortunately.

I needed that today

. I'm so frustrated with our recent medication changes. You are so right. It's not always a straight line and it is trial and error.

Thanks, Nicole!!

Susan

Mom to :
Nathan (12); BiPolar I mixed without psychosis, ADHD, PDD-NOS (Concerta 36 mg am, Clonidine .05 mg am, noon & 0.2 mg bedtime, & Abilify 5 mg at 6 pm)

Hannah (7); healthy and happy (unless you count the HSM addiction)

anonymousmom

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Senior

Posts: 1336

(01/14/09 12:40 PM)

Senior

I do want to mention that, even with the right meds, our kids are always going to have that "edge". Rob has told me that he's always aware that there is rage just beneath the surface, he knows it's there. But when he's stable, he's able to "stuff it down".

I would characterize Rob as stable right now, even though he takes no meds. But he still deals with depression and hypomania. All the time. We are learning to accept that Rob always has issues, stable or not. It's a hard realization to come to. Rob won't get well, we have to face that fact, and we have to learn together how he will be able to find his own way.

Just wanted to bring that up, as it kind of sounds that your expectations of how much the meds will help might be a little higher than you'll get.

Connie
Mom to Rob 18yo, ADHD, BP, OCD, ODD Refuses meds
Mom to Brad 26 yo, practically perfect in every way

momofalexa

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Senior

Posts: 7452

(01/14/09 01:23 PM)

Moderator,
Master of
Resources

"Life is a millstone - YOU decide if it's going to grind you down or polish you up."

Yea, what Connie said. No truer words have been spoken. My dd still will have issues from time to time. It's just how it is. Just her not having rages is wonderful though. And nowadays she does say she loves me and wants to be around me. Sometimes she drives me crazy because she is up my b*tt 24/7 but I'd rather have that than her pushing me away. Keep supporting your dd while not letting her get away with bad behavior that CAN be controlled...you know the difference....precarious a position as it is...and she will get better as she gets older, I think. Having her on some meds now is good. The only place to go when they are 11 is up, eventually....it will seem like forever...but you're on top of things!

Heather
Mom of Alexa, (17 years old) Diagnosed BP-NOS (09/05), updated to BP II w/psychotic features (05/08)
Abilify (10 mg), Lamictal (200 mg), Provigil (100 mg - a.m. and 3 p.m.), Claritin, Klonipin (.5 mg) as needed
Topamax at night only (100 mg) Seroquel at night only (200mg)
Attends alternative high school (Ohio)

bgb67

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Freshman

Posts: 6

(01/14/09 03:32 PM)

"You have given us a precious soul to whom everything is new."

I think my expectations of anything "bottomed out" a couple of years ago. I'm just frustrated with the fact that we've seen several different pdocs, and have found someone we're comfortable with, but there just seems to be this inability to find the "right" combination of anything to help my dd find some relief. From what? I don't even know, but I can't remember the last time my sweet baby had a moment of peace in her life. And the funny thing is, I resisted meds for her for almost 3 years! I thought I could fix her!! What???? We have yet to find a therapist she even remotely likes - and I've been taking her to someone since she was 4. I don't know if she'll ever be stable, or maybe not until she gets through puberty. I don't even think I was stable during puberty!

You know what it is? I think I'm just scared right now. Which is probably why I sought support, after all this time. I'm afraid that she'll never find that peace within herself, and I can't help her and it makes me so sad for both of us.

But I WILL keep going, and I WILL keep trying to help her. One day at a time, right?

Beth (mom of Meg, 11) BP NOS, ADHD, OCD

aggierules

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Sophomore

Posts: 148

(01/15/09 03:30 AM)

I am learning a lot from all of your posts! I have a question.... What is the "ring of fire" that the doctor suggested she was suffering from?

Angela
dd Marissa,13, depression/mood disorder Luvox, Risperdal

bgb67

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Freshman

Posts: 7

(01/15/09 08:14 AM)

"You have given us a precious soul to whom everything is new."

Angela,

Thank you for saying that. All I can do is try to stay on top of things, and honestly? Some days I believe my dd daughter when she tells me I'm the "dumbest, stupidest mom in the whole world." Really I do. But, then I go to sleep and say my prayers and ask for the strength to get me through another day. And I KNOW everyone will understand when I say this. Somehow, magically I wake up with a renewed spirit and strength to face another day.

The "ring of fire" I mentioned is an actual photo of a brain scan that I was shown by our pdoc. When our children suffer from any type of mood disorder, there are certain areas of the brain that turn a different color when they are aggitated. With the "ring of fire," the entire area looks like a big red circle - meaning that almost the entire area is the color red, and it looks like a ring of fire on the scan. I know this next part will sound silly, but every...single....time I hear that term, the Johnny Cash song pops into my head!

Again, thank you and although I am new to posting - the information that I am getting just from reading everyone's posts and knowing that I'm not alone is an amazing comfort to me.

momofalexa

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Senior

Posts: 7464

(01/15/09 11:20 AM)

Moderator,
Master of
Resources

"Life is a millstone - YOU decide if it's going to grind you down or polish you up."

Beth, I'm glad you are feeling the love. We want to help if we can! Sometimes just having people who understand listen is really helpful! I think you are doing a FANTASTIC job with your dd. I can tell you are a kind person from your posts. She is lucky to have you!

Interesting about the "ring of fire", too!

Heather
Mom of Alexa, (17 years old) Diagnosed BP-NOS (09/05), updated to BP II w/psychotic features (05/08)
Abilify (10 mg), Lamictal (200 mg), Provigil (100 mg - a.m. and 3 p.m.), Claritin, Klonipin (.5 mg) as needed
Topamax at night only (100 mg) Seroquel at night only (200mg)
Attends alternative high school (Ohio)

ellenscrochet

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Sophomore

Posts: 78

(01/15/09 01:07 PM)

Freshman

I'm afraid that she'll never find that peace within herself, and I can't help her and it makes me so sad for both of us.

Beth, this has been my fear for awhile now with my son. I don't know how many times he has said he wanted to kill himself or die since he was 4. He is only 8 now and I can't fathom how someone so young can feel so hopeless about his life. The other day he said "you can't help me, nobody can, my life is just too bad". It is just so sad!

Ellen

- Mom to ds JJ age 8, bp, selective mutism, gad, sid
currently on risperdal

lilyns

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Senior

Posts: 1852

(01/15/09 05:43 PM)

Senior

Beth,
You described so eloquently exactly how I feel. I know that I will never give up with my DD either, but at the same time, the despair overtakes me when I think about what could have been as compared to what probably will be. At least there's comfort in knowing that we all have each other.

Loads and loads of

to you!

Lynne,
Mom of Lilah, age 15 (Abilify-25 mgs. and Lamictal-200 mgs.)

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