K is off of medications...

[totoro]

Well this will be short!!! Who me??? I need to be in bed. husband is yelling at me. I wanted to do a quick update, K will be done with her Lamictal, as of Saturday. We Difficult Child'd it very slowly... She is actually doing really well.
Did I say great? NO.
I must say, I am not patting myself on the back, but I think some of it is her growth, but I think all of the structure and mods we have put in place over the years. We try SO hard to be consistant and help her have an outlet. We try to give her the tools... to let her know she can't just freak out. That she needs to use her words... not violence. Give her options... We have centers set up all over the house for outlets.
We watch her like hawks, for red flags, and then swoop in to help her, help her see that she is elevating. And then go do something else... it doesn't always work, but she is learning. AND she is TRYING so HARD!!!
She is asking me if she can do things, like turn on the TV ...
She told me the other night after a break down, that she was sorry, but she was just out of control, and lost it. She wanted to keep it together, but could not.
She would try harder next time...
We are taking more vitamins... fish pills, melatonin.... etc.

I have no fantasy that she will remain medication free forever, but as long as she is non-violent and non-suicidal, and not hallucinating. We can handle this!!! It is better than what she was dealing with before...
And when she has to take medications again. It will be one at a time, maybe only one... and a long time to see the results....
I know how it is. I have to take medications for the rest of my life, so I am by no means delusional about the reality of Bipolar Disorder.

We are in the process of moving, it will take some time... we are not going to sell our home in Idaho yet.... We will rent it out. The market is too umm @#*$#&#*@@& right now... we would lose our @&$$&^#& if we did try to sell...
So we will enjoy the summer, the girls will start school in the fall in Tucson!!!
We have 2 psychiatrist apts in the next 2 months, in Tucson.
When I called to cx with psychiatrist3. He never called back to talk, like I asked... nothing... So on to psychiatrist5...
K is a wreck, don't get me wrong... but she is not cognitively dulled, she is not a medicated wreck...

We will see... we have hope.

 

[Wiped Out]

Totoro,
Seems like things are going reasonably well. I'm glad things with k are going o.k. It sounds like you have a great plan in place to help her. I hope you find a good psychiatrist soon. Hugs.

 

[Big Bad Kitty]

Hugs and lots of prayers that this is the start of something wonderful. You have so much on your plate.

Smack that man upside his head and tell him I said to stop yelling at you. Or I'll meet him at the airport next time he flies into Chicago and yell at him myself.

Big kisses to K.

 

[totoro]

It was weird we went out to diner!!! Very scary. But we said we have to do things. We have to try!
So K was doing , pretty well, the food came. She started to elevate. She started shaking, "It is too much, those noises"
She started to push her plate and slip down onto the floor... you could see it was too much and too overwhelming for her. She was gonna elevate and freak!!!
So normally I would grab the food and just leave.
We just looked at her and said... You need to pull it together, now.
I said, "I want you to get up and walk over to the fish tank and look at the fish. Leave your angries, try really hard to calm down, please"
"Come back and we will do anything we can to help you"
SO she did... and she was fine!!! We are looking at our techniques and the way we handle things...
But she held it in, and she had to let it out later when we got home. But I am so proud of her and how she is, becoming a big girl and so aware...
Her little mind is also so much clearer... she is just thriving. With the cycling...

 

[pepperidge]

Sounds like you are doing a great job managing her moods as best you can. With all these coping skills in place, imagine how good life might be if and when you find a psychiatrist and some medications that might help her. Your plans to be methodical with the medication trials make sense. I am also glad that you have this time again to get a baseline on her. It will make you more confident going forward with medication trials and able to distinguish what is the effect of the medications, good and bad. hope that she can keep it more or less together....

 

[totoro]

Pepper-
That is exactly my wish... thanks. Actually this new psychiatrist5 sounds pretty cool. FINGERS crossed again. She is highly regarded. we are going in with no real expectations this time. It is funny, we are pretty calm this time. It is as if by giving up... we have hopefully found an answer.
She is seeing just us first. And then a week later us with K.

 

[susiestar]

Totoro,

K is so very blessed to have a mom like you. And a dad who will help also. I know it may seem that there is no option other than to do whatever your child needs, but many people just don't see that.

The centers sound like a great idea, how cool!

Hugs and prayers that things go well with the new psychiatrist and with the interim no-medications period.

Susie

 

[jannie]

I'm glad to hear that K is actually able to use some of the strategies you've been teaching her !! Way to go !! Fingers crossed things continue to go well while off all medications. I think it's great that you've been able to take her off all medications and get to see what she's like without any medications. My difficult child 1 has been on medications since May 2005...I have no idea what he'd be like without medications and I'm way to scared to even try....

I think it's great the new psychiatrist is meeting with you and husband alone for the first time...you can definately get a feel for him....

 

[SRL]

difficult child was on an SSRI about the time he was K's age. After 9 months we wound up pulling it due to side effects and found that even that much time made a big improvement in his ability to apply coping skills for anxiety. That held until he started all day first grade and what that even worse medication experience made us do was decide we would go to great lengths and endure a great deal before going that route again. (Sibs were seriously begging us not to put him on medications again).

I know we're talking a different child, and different diagnosis, but the treatment was worse than the cure in those few experiences of ours. It took a full year for all the negative behavioral side effects of having an anxiety crash combined with medication reaction to settle down and get back to "just difficult child". It was probably 6 more months before he started making forward progress from that baseline. Especially in the early months it felt like we were taking the long steep road and I would have paid a whole lot for that one magic pill to give him and our family some relief.

difficult child's been medication free for 5 years now. I'm not bashing medications and am not closing the door on future use, but I'm really glad we did what we did and give him a good long period to undo the damage done by the combination of the medication and the emotional experience he'd been through. I won't kid you--it's been a ton of money and a lot of work. We set up the sensory gym in the basement right around then and our lives were pretty much given over to keeping him calm and basic family functions. But it's worked...so far. We kept up a relationship with a doctor able to prescribe for him for another year or so but we don't even have that anymore.

You might try bringing a gel ball along to restraunts if she can tolerate the texture. If heat is a comfort a baby sized hotwater bottle or microwave heat disc. Simple things can be a whole lot of help for some kids.

 

[Jena]

wow i am so happy and impressed by you and your husband. it's not easy and it sounds like the both of you are working so very hard and so very well for k. she is very lucky to have you guys.

moving can be quite stressful i wish you luck, renting the house out is a good move. the market is very bad right now.

omega 3's i've heard are great. it's so funny you said that because i'm going to store with difficult child today to go and get some vitamins she's been very freaky after the evaluation. violent almost hit me last night.

i'm so glad for you i really am i hope this road you are on continues to go in the right direction. you are right who knows regarding the medication's but it sounds like right now you have things well under control. i love the centers things.

ok i'm sorry i'm late to this one. just wanted to say hi and good for you guys glad to hear k is doing better and good luck with the move.

Jen

 

[totoro]

SRL~
We bring her hand tools with us everywhere we go, but I had not thought of a warm gel pack!!! In the summer a cold pack might be "cool" also!!!
WHat a good idea!!! We bring their leapsters with us, but as we know sometimes... what works, does not at others!!! I just want the both of them to live as normal as possible... even N with her Sensory Integration Disorder (SID) and anxiety has to deal with this as well.
THanks everyone....
We have an 6+ hour car ride today!!!!
WIsh us luck....
I will fill ya'll in later...I am packing for it right now...
We really do feel good about these decisions...

 

[TerryJ2]

Good for you and K and everyone, Totoro! It is a lot of hard work, as you know, and you will all reap the rewards. It's something K won't know until she's your age, but that's the way it goes.
Sounds like you have a good plan for summer. Moving is always h*ll.

 

[SRL]

We got one of these microwave heat discs with a fleece cover for the bunny and I thought right away how helpful it might be to kids who are comforted by heat. My difficult child used to sleep with a heating pad by his feet but I would have prefered this non electric deal.

http://www.amazon.com/s/ref=nb_ss_gw/102-3552894-8264141?url=search-alias%3Daps&field-keywords=snuggle+safe