Well who packed me and moved me to Hooverville?

[totoro]

We are tritrating K off of Lithium! Oh joy of joys!!! I am so happy that one more medication has not worked.
Oh and K has now started ripping her eyelashes out! Could I not be happier?

I am currently getting 2 e-mails a week from Teacher where we are brainstorming about how to help my child.
K's anxiety is sky high, she is so freaked out about tests and School in general.
We are adapting everything that is freaking her out as each one comes up.

We are seeing nothing with the Lithium and an increase in her negative symptoms. Whether or not this is to be attributed to the Lithium? Who knows.
Taking her to a higher blood level is pointless. she is at .6. If we were going to see any positive we would have by now and going higher is not going to magically produce something good.
Fact of the matter is a lot of studies say that Lithium is not good for kids with ADHD and mixed states, which K has both.
We should have seen some positive by now.

She is doing horrible. She is miserable. She told psychiatrist this morning how bad everything is. How she just wants it to stop, how she wishes there was a pill to just make everything better.

Our therapist is freaking out.
psychiatrist told K that we need to help her better and we trying our best.

I started crying when I left School this morning. She missed the big 2nd grade party for the tie-dye's they did on Friday.
She was with husband at the psychiatrist.

I just stood there watching all of her classmates smiling and dancing around, all 3 classes were together and she missed it.

I walked off and started crying.

And she is in the fricken psychiatrist's telling her about the stupid Fairies...

Mental Illness hoovers

 

[klmno]

I'm so sorry, Totoro. I hope and pray you find something that helps her soon. I feel so bad for her and you both.

 

[Shari]

Sending many hugs and prayers, Toto. You are doing the best you know how, and looking for ways to do better. That's all you can do.

You are right - it hoovers. And I'm sorry.

Hugs.

 

[gcvmom]

I'm sorry Totoro... it's not fair. Wish you were closer, I'd come over with some hugs and brownies and donuts.

 

[smallworld]

I'm sorry. It does totally hoover.

I have read that it does make a difference whether the level is between 0.8 and 1.2.
And whether generic Lithium is used.

What's the plan at this point?

 

[totoro]

I know the levels do matter. But from what I have read and from what I read from boards on which people are actually taking Lithium.. they all say you should be seeing some positive affects within days, weeks at least within a month.
You will not see stabilization until you reach the optimal blood level, but you should see some benefit. Not negative and not nothing. I am not talking about side affects like the tremors or inability to read. .
I do agree about that some people react differently to generic vs. non.

We did not try this. Her psychiatrist feels if she was just not reacting that well but having some positive maybe. But we are seeing nothing and negative since starting it.

We are thinking Lamictal again because she did OK before on this, but was jacked up on other medications with it.
And I do really well on it.
We only took her off of it because we had no psychiatrist and we were frustrated and had no help.
So when we found new psychiatrist we were starting fresh.

Thanks you guys I am just frustrated all over again and tired. We just don't have any help and never have a day off. It gets so tiring.

 

[klmno]

The medication battle is a roller-coaster ride, as you know. difficult child was given lithium as his first MS and it either didn't do anything or made him worse. After trying lamictol, we went back to lithium, except then psychiatrist rx'd lithobid and I did see differences within a couple of weeks. I never knew though with my son when/if it's the medication, stability coming and going on it's own, or difficult child efforts. I have heard that the mental state of the difficult child when first starting on lithium can effect how effective, if any, it will be.

 

[crazymama30]

Hugs toto. It is so hard to see what they miss out on. When my difficult child missed his field trip to the zoo, it was about all I could take. I drove him to school to go to his in school suspension (which he deserved) and watched all the other parents dropping off kids with sleeping bags and overnight bags.

Hugs. I wish I could offer more, but all I do is offer a cyber shoulder.

 

[smallworld]

I'm a big fan of Lamictal since it's been a very good medication for all three of my kids. Given that it works well for you and it's worked for K in the past, there's a good chance it will work again. I'm crossing all body parts for you.

 

[Steely]

A zillion, million hugs girl. It WILL get better. Please know you are not alone. I spent the last 18 years crying over all of the lost opportunities difficult child missed out on because he was mentally ill. It truly is like any other illness. Let there be no mistake. I am going to PM you.

 

[totoro]

Thanks all again!
I really hope it works as well.
I think it helped her?
Because the psychiatrist then had her coming and going on all of the other medications it seemed as if the Lamictal and Abilify combo had to help her at the time.
I tend to be in a mixed state and rapid cycle, so I am really hoping it works for her.
But I know she is getting worse with time, despite the great services we have in place for her.

I just know in my heart that a medication is not supposed to make you feel worse. I am not going to do that to her. I am not expecting a cure, but I know enough to know that she should feel some sort of relief.
She is smart enough and can verbalize well enough to tell us that she hated the way Lithium makes her feel.
I am not doing that to my 8yo. My medications do not make me feel horrible, they make me feel better.
I know we will find something for her.

 

[Star*]

Toto,

I would not say this if I didn't feel like the dope fairy myself. And (exhales after much thought before saying this) I want you to take this for what it is worth and understand that this is my son I'm talking about and not your daughter so it is two completely different people, with two completely different types of problems. That being said here goes.

In the world I know now that there are a lot of very disturbed children because I am the former wife of a very disturbed man. I am also the Mother of a child who was labled at 4 years old as so disturbed that there was little hope. I mean literally who lables a kid that disturbed at four? So we started him on medicine after medicine. Guinea pig treatment after guinea pig treatment. Up, down, up, down went his moods, his behaviors and everything else in our whole world. Everything.

Sixty seven medications later if you ask me if I had it to do all over again with medications would I allow the doctors to prescribe again? Knowing that 13 years of medications did nothing? No. No I would not. We tried SSRI's of varying classes. We tried anti-depressants. We tried mood-elevators. We tried stimulants. We tried downers, uppers, inbetweeners. Combinations of almost everything known and each time there was something new out? The doctors would suggest it as the only thing left to try. Desperate - I'd say, beg, cry, plead - please let it be the one that helps him. It never was. Never.

At sixteen years old Dude finally told everyone he wasn't taking any more pills. In Department of Juvenile Justice they told him if he didn't take his prescribed medications? He would get more jail time and solitary time. He took the medications and ended up trying to commit suicide - again. So what was the use? Now years later I can actually say that for as many years as I was pro-whatever works for the moment, my house isn't so sure after all we've gone through that it ever did. Matter of fact - when they suggested Lithium for Dude it was the first time we said No and backed away from medications period.

I understand your frustration about K's missing out on the Tye-Dye party vs. frickin fairies in the T-docs office. She's your baby - and you want her to have as many norms as she can and when she misses them? It's hurtful. I know - Dude spent more time in hospitals than he did in school OR at home - so believe me I know. I have 3 actual school pictures of him - the rest are of him in Residential Treatment Center (RTC)'s. Makes me just cringe when I see those 12 years of school photo frames......but - at 19 he's still trying to get a GED and that is noble. He still get's up every day despite whatever gets thrown at him and goes on and to me that builds character. So it's not all for not with our kids. They'll get a whole other life lesson that a lot of other "normal" kids will never get. Maybe if you think like this - Our kids get a non-elective class that is so special you actually have to be one of our kids to get the lessons - that not just everyone gets in - and at some point? The lessons they learn DO help them in life where other kids in mainstream wouldn't "get" what our kids "get" because....they didn't GET it.....get it? - Makes our kids just a cut above in that respect.
It's an exclusive club. Really. Secret society of sorts. lol.

I still mourn some of the things that I feel Dude never got - that's pretty normal. (Shrug) I still morn a lot of the things I never got - (okay not counting the PTA thing - but I did get to meet great ladies who would go absolutely out of their way to stick 3 stone donkeys in the sand, and one Mr. Meany with a rope out and take pictures and write an awesome story - and I bet you no other person in the regular world has ever gotten something so cool...'cause I know they haven't. And...I can tell you for sure - no one else has 2 princesses living in Arazionia..and a story made just for them...huh? Yeah...right? So there are perks to being no so normal. And you can probably get K a tye-dye shirt kit - and make her one at home - (not the same I know) but.....what if her Auntie Star sent her - HER Grateful Dead dancing bear Tye Die Shirt? Huh? - NO? Okay then....(groan) lol. Just sayin. ahem. Actually probably better cause I wouldn't have anything for N...lol. Oh wait - I do have that Bdazzled Rolling Stone tongue thing - huh?? No too huh? Okay - I tried.

Listen - all I'm saying is that right now - there are a lot of things that are going to hurt you - and rightfully so. Belive it or not when you write about them - they hurt a lot of us for you and K too. - But we understand. Doesn't make it better - but wanted you to know that.

Just hug my angel for me. I'm sorry she's having such a rough time - and you too. Maybe the answer isn't more medicines - maybe it's less to no medicines and some type of EMDR therapy or total body massage? Have you considered allergy testing? have I asked that before? Ugh...Just a loving auntie thinking out loud. How about an MRI or PET scan? There just has to be something with her that we're all missing...AND what about? A THERAPY DOG?? I mean it....what about a pet that would be with her like a trained lab that could sense when she's about to have a meltdown and could alert a classroom aid and could get her to a saferoom? Dude had WAY less anxiety when he had a dog around...it seems with our children if they have a pet that can sense their anxiety attacks - it helps calm them - and they DO have therapy dogs available and trained for such things. How about that? Would that help her?

Hugs & Love
Star

 

[Steely]

True, you will. I have been on too many medications that have made me feel worse, rather than better, and I have had to learn to trust my inner voice not one of a Dr. as well. I am glad you are letting K do the same.

I know you know, but just as a reminder, K might need 2 mood stabs as time progresses to really get a grip on her rapid cycling. Matt is a rapid cycler, and every psychiatrist from here to the North Pole said Lithium would not work for him - yet it did make a dent in his mood stability. However it was not until we added Lamictal that the difference was truly seen. Again, every psychiatrist from here to the universe said - oh good grief - Lamictal and Lithium are more for the depressed bi polar patient, not the rapid cycler. Yet, that is the only combo that has worked for Matt. He was 17 when we found it. Not to be a gloom and doom, but it does take time. I started searching when Matt was 4.

Every patient is different, and as the difficult children parent, the best we can do is be our kids spokesperson and advocate. I have had many doctors tell me that I am over involved and over interested in the medical practices of Matt's care. Maybe I am. However, I know I was his mouth piece for words he could not say when he was young - and now I am his advocate for words he perhaps can not articulate.

 

[Steely]

I like the therapy dog idea. K would love that.

Star* I think you and I are in the same generation of medications for our kids. I almost stopped trying to find ones for Matt as well. However, there are some new wonderful ones out there, that could help K. I would not give up hope on that avenue just yet.

Toto - Dr U (you know who I mean) has done some PET scans with mixed results. I could get you at least a phone consultation with him - to get more info. There are some amazing new ideas out there, andI respect Dr U completely to give you the full scope of info.

 

[totoro]

Star*
I get it.
I also got some tears.
Both of those girls get massages every night. The Cognitive Therapy has been helpful we are going from there. Allergy, all of the other stuff you said.
My therapist would love you... she is reading your mind or Vices of Versus as my little Brother used to say.
I am finding my way, slowly... and I made sure she got her shirt.

 

[totoro]

Thank you also Steely... I know M has been down a long road and you have fought hard. I respect all of your info and advice.
I honestly don't know how you or any of the others have done it for so long with out stability.
It just breaks my heart thinking about it.
I keep hoping for changes in this science... I know it might happen, I just want it in our kids lifetime!

 

[Star*]

SO CAN SHE HAVE THE DOG?? Wouldn't that help?

How about the GRATEFUL DEAD SHIRT?

LOL - pft....okay - okay....back to my corner...I know. Bad Auntie Star. I can see K looking at the Dancing bears and saying "Mom - those fairies are hairy." and N saying "Those faireys are so hairy I have no Idea WHAT Auntie Star is thinking and why does MY Tshirt have a set of lips on it?" lol

Oh and toto - it's HOOTERVILLE - Petticoat Junction right?

 

[Wiped Out]

Just adding in my hugs. I'll be saying prayers for K.

 

[DammitJanet]

Lithium was yucky for me. It takes lamictal and topamax for me. And a tad bit of seroquel since I went looney tunes.

 

[KTMom91]

Toto...hugs. I'm so sad for K. I wish I knew how to help.