K's psychiatrist apt.

[totoro]

It went pretty well. K did not want to talk. She does not like talking, the ex-psychiatrist's have left a mark on her.
K said she was doing pretty well. Said she was doing her school work... blah blah blah.
husband and I laughed.
K then laid on the floor and played frantically.
We talked about K's last 5 weeks. Her increase in School issues, bolting from class, going to nurse and sleeping 3 times now.
The increase in rages. The depression, the talks of death, the hallucinations.
She had told K and made her promise not to bring her *fairies* to School. K has been bringing them to School... worrying about them needing to save them.

Letting us know about how much chaos is in her head. Telling her teacher how much anger is in her head.
psychiatrist really wants to start Lithium... she has wanted for awhile now. I have not been able to go to the apts for the past 3 times, so I think husband has blocked this.
He is scared.
So we said we will talk about it. I said well we would wait until after the Holidays anyway. We see her right after New Years. We are upping her Seroquel, to QID. One now at bedtime.
Only up to 150mg now.
psychiatrist does not want to use Seroquel as a main MS. She does not like the side affects. So she does not want to up it much more.
I don't know why we are scared... this is like our 18 or 19 medication. I am just scared of getting my hopes up.
I am scared of it not working... I am scared of K getting all of the bad side affects again.
I hate medication changes.
I know she needs something.

On a side note:She feels N should not see her! She knows we are not going to medicate her.
She agrees with us that Occupational Therapist (OT) would be great for N.
N was seeing an Occupational Therapist (OT) for around a year and she did so good with her.
SO we will look into this again and follow up with the University and see what they think as well. But no medications!
Anyway lots to think about.
I know that K just wants to feel normal, what ever that is. I told psychiatrist that I like most of K's behaviours. I just don't want the poor kid to hate the way she feels, the chaos, the anger, the sadness. If K doesn't like the way she feels, then I want to help her.
Thanks for reading.

 

[Jena]

hi

Alot going on, im sorry. I don't blame you for being scared and nervous it's so normal..really. I feel that way as well with the fact we are on seroquel again and inching our way up higher every other night, yet it could be the 20th medication and i think as Mom's we still get edgy and nervous. It's the unknown of it all. So, he's nervous about the side effects? have you seen any yet? I haven't, we are at 75mg now.

I've heard Lithium works wonders for some kids, yet it is a more involved medication in a sense with the blood tests and all, right?? I've heard that 150mg of seroquel to combat what our kids go thru is still low. I've heard ppl tell me we can go up to 600 or even 800.

I'm glad to hear about N and maybe that would be a good idea. I see your point with the medication issue in regards to K. I'm sure you and husband will make the best decision for her. You may just have to mull it over, sleep on it and than talk again. Sometimes if i give something like that a day or so to mull it over it becomes more clear.

I wish you luck with it.

(((hugs)))))

 

[totoro]

Thanks Jennifer
husband is worried about the Lithium side affects.
I know that Seroquel can be used at a lot higher doses but our psychiatrist does not want to use it as a MS, she is using it as an AP. I think she feels it is not the best for MS.
She does not like the side affects of Seroquel and K has had some bad AP side affects. Her tics increase and her weight etc.
psychiatrist is being very cautious with K's medications, due to her past psychiatrist's starting and stopping so many medications so quickly.
We have increased her Seroquel very slowly and will continue to do this with any medication from here on out.
One at a time and slow and low.
We have been mulling over the lithium for months now, we knew it was the next step... we have just been hoping K would *start* doing well and we had so many changes since August. Move, new School, new therapist etc.
We were not going to change her medications on top of it.
We will start it at the beginning of the year most likely.
We are gong to talk to her and make sure we are ready and K.

K has had plenty of blood draws being on Depakote and getting them with the start of other MS.
She doesn't like them but she does OK.
Bribes!!! LOL

 

[gcvmom]

I'm just curious what it is about Seroquel that the psychiatrist doesn't like compared to lithium? Did she say? (Oops... never mind, just read your reply to Jenn).

I hate medication changes too. There's always the uncertainty, the waiting-to-see, the worry that it might not work or might make things worse. But like you said, she certainly does need something because she's not doing so great with her current treatment.

I would have mixed feelings about waiting until after the holidays to start the medication change. Part of me would want to wait so that we're not rocking the boat during a special time of year. And part of me would want to hurry up and start the new medication so we can maybe see some progress before school starts back up.

Would the psychiatrist have her wean completely off Seroquel first or gradually add lithium and then back off the Seroquel?

 

[totoro]

She likes the long term and more stabilizing affects of Lithium. She likes the fact that Lithium has been used longer and she has seen better affects for kids like K.
She thinks with K's moods that Lithium would be a better fit... who knows?
We would keep the Seroquel the way it is. She thinks the seroquel is doing its job, as an AP. K is much less violent on Seroquel. She used to rage for up to over an hour with incredible violence towards all of us.
Because of the Holiday chaos and the in-laws in town. We felt with the blood draws, the side affects that occur with starting a new medication. We would be better waiting until after the holidays.
Also Lithium takes upwards of Months to see the benefits... Sometimes longer to see the full benefits.
We do not want K to equate medications with a bad time, like feeling sick over the holidays.
From what I have read Lithium can be hard on you in the beginning.
I don't know what the answer is. It is funny, so many psychiatrist's feel so strongly about certain things.
We had one who was against Lithium for kids... We had one who hated Seroquel.
One who felt Concerta was the answer for most kids!!!
These were prominent psychiatrist's!!!

 

[gcvmom]

Well, you go with your heart... it hasn't failed you yet! I hope that the next step for K gets her headed down the road to better stability.

K's issues are very different from my difficult child 2's, whom I think of as a mild, probably cyclothymic form of BiPolar (BP)... so maybe that's why we're in the Seroquel camp today. He hasn't hallucinated (except possibly once with audio-type stuff when he was on Zoloft), never was violent or destructive towards anyone in the family, and the acting out he did against peers was pretty tame stuff (and frankly, they had it coming!), never was suicidal (although has been depressed). His problems have been primarily hypomania-related.

But I digress...

I hope you all have a GREAT holiday in your new place -- maybe you'll even get a little dusting of snow for Christmas? The desert is always full of surprises And hopefully the new year will be a good start for K.

 

[crazymama30]

Hugs, and I hope everything works out. Lithium is scary, and I hate medication changes too. difficult child tried depakote and lithium both, and both made him worse, violent. He can be aggressive, but no violence for a long time now. He also has cyclothymia. One of the nurses I work with said that Cyclothymia was listed in the DSM as BiPolar (BP) III. Not sure how that is pertains to the post, but it is an interesting fact.

 

[Wiped Out]

The psychiatrist sounds good-I like that she is moving more slowly. We had a psychiatrist that also used to start and stop medications so quickly and the one we have now is so much better. I hope the lithium is helpful-I know for many it is (didn't do much for my difficult child but every child is so different). We were always lucky with blood draws-one time difficult child told me he missed getting his blood drawn!

 

[Rabbit]

Hi My difficult child 2 is on Lithium. He has been on it
for about 4 years now. Nothing else helped before the lithium.
I know all our kids r different and I sympathize with u
trying to pick the right medication. I am trying to pick a medication for difficult child 3 and I am having no luck. I guess what I am trying to
say is u r not alone! Sending hugs Rabbit

 

[Jena]

i'm glad the seroquel combatted one of the issues, yet i can totally see your doctor's point in regards to K, and the long term use. I'Tourette's Syndrome a hard call I know, yet you will make the right choice, trust in yourself. Maybe your pediatrician can help you, or you can find stuff to add to k's diet to help with whatever the side effects are, like stomach ache's naseua that stuff.

((((hugs))))

 

[totoro]

Thank you ladies!
I don't know why we are afraid of Lithium? It has been the most studied and most affective for the most people.
I think even us, the people who are fighting the stigmas still get scared when you hear Lithium! LOL
I would take it myself if my psychiatrist felt it was the best choice, but K is my baby.
I have been re-reading up on it.
I think it is like any other medication. You go slow, you do your homework, go with your gut, blood levels, journal, watch for side effects and all of that.
I remember K starting Lamictal and everyone freaking out about *The Rash* Steven's Johnsons.
It is the same kind of thing, you watch and hope for the best!
K and I both had no problems with it.
I also have no delusions that there is a cure for BiPolar (BP). I just want something that will help K.
The one thing that kind of freaks me out is after reading a bunch of *real peoples* feelings on Lithium is how long it really took for them to know if it was the right medication. Some took years.
I remember reading, Kay Redfield Jamison's Books and her talking about how long it took for the Lithium to adjust, but once it did, it really worked!
Same with lots of other people who have BiPolar (BP).

I also know we can revisit medications down the road if this does not work.
The one thing that I really love about psychiatrist5 is that her son has BiPolar (BP) he is 22. She is honest, funny and to the point!
She works with a huge University but is working on her own so she can work as she pleases.
As we were leaving she and I were discussing how to get blood out of clothing! Her son gets bloody noses... K had 3 in the past couple of days and had one yesterday. It was funny! She was telling me a story about how when he was in school, the school would absolutely freak when he got one and send him home if he didn't have a change! They were afraid of AIDS...

I like her, she also lets us say NO.
ANy more insight is welcome!!!

 

[Jena]

I think just the word lithium rings badly in our ears. I see the same thing with the seroquel as far as the her tics and also her weight. The tics are now subsiding somewhat and i fight every day over not eating. her appetite is enormous. it just gets worse the higher we go.

i really have heard some stories about lithium and certain children and how it does work wonders.

 

[smallworld]

Toto, Lithium is the gold standard for a reason. It works for people who have BiPolar (BP). You've been fighting this demon for a long time. Time to give K a chance to have more of a "normal" childhood (whatever that is).

We've never trialed Lithium for J because he's so darned needle-phobic. But if it got down to no other options, I believe we'd find a way to make it work.

You and your husband are good careful parents. You'll find a way to make it work, too. Hugs.

 

[Steely]

Ditto what smallworld said......
It is the gold standard for a reason.

Truthfully, Lamictal is a much more scary prospect than Lithium - it is that stigma you are talking about that starts to mess with us. The effects of Lithium start back as early as the 1900s when people started using "mineral springs" to treat their depression. It is no more unsafe than using things like Depakote, or Trileptal.

I feel like a broken record, but literally the only medication that has ever made such a profound difference that I could tangibly see it was Lithium. It took about 2- 3 weeks, and suddenly what I had assumed had just been Matt's quirks disappeared - what I did not realize at the time were that those "quirks" were actually symptoms of mania.

Obviously it did not take away all of his issues - but his mania all but disappeared unless he is under highly stressful situations. (AKA his current one.)

Hugs - I know it is hard. It is all OK though.
FWIW I agree with psychiatrist -
K needs an AP as an additional, calming agent, at a relatively low level. However, the main medication that she will need to quell the storm in her brain is a MS.
(OK, I just sounded like a pompous DR...........so sorry..............but you know, just my opinion, yadayadayada, blah, blah, blah.)

 

[totoro]

Thank you all just getting it out sometimes and reading your words makes me feel better.

 

[Big Bad Kitty]

Poor K. My heart just breaks when I read about her. If you do try Lithium, I certainly hope for the good to outweigh the bad...