How do we get through the interim?

[totoro]

Well I am still waiting... I got her to school yesterday. I picked her up and she started crying. Her best friend wanted to sit with someone else. They were in the library, she didn't know how to handle it. She sat by herself, was very upset. Asked to go home, the music lady said no, was not helpful to her, K said she was very upset. I told K that she can and should go to the Office next time and talk to the ladies in there. They are very nice. Just to take a T/O. I told her not to get upset and just to tell someone she needs to take a break and go to the office.
I am ****** because I have asked for this... I have tried to explain this. So she is in the car sobbing. I end up having to skip Horse Therapy. She was yelling that she was a loser and that she might hurt the horses by the time we got home.
She was a little bit calmer last night. So I mistakingly thought she might be coming down...
She came downstairs happy this morning. slept pretty well, but then I was trying to help her spell something, she started yelling at me. I was in the middle of making her Porridge, she asked for it, she was spelling Slipper... so she got to S-L-I-P-P and I said what makes the end sound... the eeerrr sound and she "r" I said No not the "RRRR" sound the "eeeerrrr" sound with an emphasis on the E... she starts screaming at me that I am wrong and it is R... From that point on she decides it is spelled , Slippre. I walk over to her and tell her if she is going to get upset with the computer and start yelling at me she is going to be off of it and done.
"You are wrong" I ask her to calm down and look at me, I write down how to spell it and show her... she starts stabbing the paper and runs off screaming, "Mommy is wrong it is spelled RE, RE, RE!"
Then she starts in on husband....
Well she wears herself out and comes back into the kitchen and I ask if she is ready for her Porridge? Yes. Now she is depressed... I am horrible, I lose things. Full blown. I tell her it is OK and I am not mad at her. I will sit with her and get her some slippers... LOL
She has forgoten the incident now, or doesn't remember. So now she is singing songs about death and dragons... and talking to her friends who are not there...
Last night she was sad that her "good Fairies were gone" the ones that she hears. She wished on a star that they would come back.
She said that the bad ones are still around.
Yesterday No phone calls...
So we wait... and try not to bug anyone with our desperation. We will wait a few more days before we start the medwash... we will do the Topamax first.
therapist just called and said she is supposed to talk with psychiatrist on Mon, so I called and gave a verbal release.
UofA is supposed to call today...
Oh I feel tired... it is 9:30

 

[Big Bad Kitty]

I don't know how many more pieces my heart can break into when I read this. I wish I had a wand to wave and make it all go away (and I know I am not the first one to say it here).
Praying so hard for you guys. Sending the Biggest Baddest Kitty hugs.

 

[totoro]

Oh BBK you just made me cry... seriously...

If any of these Doctors could read what these kids go though... it might make them try or just do something a little different...
She is refusing school again. After yesterday. She is taking a little horse that she glued a little saddle onto... and "giddyupping" him all over the house right now... the saddle is quite inventive!!! It would be pretty funny if she wasn't SO manic!!!

 

[meowbunny]

My heart just breaks for you and K and N and husband. I have no words. I don't think there are any words that can help. Life isn't fair, but it certainly should be a little kinder.

(((((HUGS)))))

 

[howlongto18]

I wish I had something to offer you! You have described what we were going through with Juan Carlos last month to a T. Sounds exactly the same, only it isn't bad fairies with Juan Carlos, it's the transformer boss. The Transformer boss "told him" not to let us take him to the doctor and not to take medicine because he would lose his powers. He was violent just the same... his eyes were blank. He would hit me and say he liked to hurt me. It was horrible and we were desperate. He barely even talked, mostly growled. There was no peace in our home. I almost hopitalized him a few times, but chickened out. I homeschool so it was all day every day, not that he would have been able to handle public school anyway... I couldn't teach him at home either, we just had to set school aside for a while.

I hope that you find the right help for her. Our doctor prescribed Seroquel and it's a whole new world right now...

In the mean time all I can offer is my sympathy. I suggest you and your husband trade off if that is possible. Buy a new video game or anything at all that you can do to take some pressure off and give you time to be yourself again. And try your darndest to distract yourself. i found that even when I did get away I felt guilty for leaving my husband with it, and would sit and fester on it all. I really need to find a better distraction myself.

 

[howlongto18]

Just to clarify, I meant the video game to keep her busy, not for you - LOL

 

[wakeupcall]

If these doctors could REALLY see our children when they are in a state....I think they would be soooo surprised. Even when they are hospitalized it isn't the same as when they are on the home turf and displaying these behaviors. So often I think they think it's the parents glorifying the situation. 'So sorry, Totoro, that you can't find someone to help you, NOW. If we could....ALL of us would take her for awhile and give you a much-needed break so that you can breathe. Your stress level must be off the charts.

 

[susiestar]

Hey, any word? We are all praying for you. How is N handling things?

I am a bit worried that she did not remember things. Well, a lot worried, but I worry a lot about y'all anyway!

Does she have any seizure history? It is all that comes to mind for the not remembering.

Hugs, and hoping the UofA called today and will see her ASAP!

Hugs,

Susie

 

[totoro]

Yes... Well UofA called... I was not part of this... but somehow when husband talked to the psychiatrist she told him she would call us when she got back... she did not tell her intake coordinator this. So he called psychiatrist Monday just to see if she was back in the States. Then he called Intake Coordinator also. She called us today, she fully remembers us. She felt so bad and said psychiatrist did not tell her about the phone call and she booked all of her apt's through March!!! She can get us in March 31st...
But she transfered husband and he left a message with psychiatrist again explaining that it was probably our fault and a miscommunication but we need to get in ASAP...
SO!?!?! But I told husband that would get us through the medication-wash!!! LOL

He is fully depressed... and he is supposed to leave Monday for a week for work...
K is doing a little better, just lying on the couch playing her leapster. Probably a better education than the school!
So now I have to think about what next? and our real estate agent came to look at the house! He listed all of the work we need to do!!! A LOT!!!

 

[Steely]

OMG, I am praying for you guys!!! I feel so horrible for K, and I just cannot imagine how a doctor is not jumping through hoops to help you. I mean, it just baffles me. How can a psychiatrist be so complacent, as to not pull out all the stops when a child suffers like K? Makes me momma bear mad.

It seems like you have tried all of the "new" medications - it makes me wonder if some of the old school medications might be worth a whirl. Of course, Lithium, which we have talked about before - but there are also some old school APs, and ADs out there, that can be beneficial. When Matthew was that age, he was on Elavil, which actually helped take the edge off everything. He was also on Mellaril, which is now black boxed, but was THE best medication for him, hands down, ever!!! It was like he could think again. At this point, I think I would talk to the psychiatrists about trying some of the medications that are not so main stream, since she is obviously not tolerating the new, more trendier medications. You know the new medications have only been around 6-8 years.......ten years ago........the psychiatrists still had to use things like Stellazine and Thorazine.......which have "such a bad rap" now, for whatever reason........but had helped millions of people before.

So, will this current psychiatrist see K until you move? Will he hospital her if she needs it for her safety? I think you need some sort of emergency, contigency plan for the medication wash.

As always..........BIG hugs, and mucho cyber strength sent your way.

 

[smallworld]

Actually, many kids with mood disorders need two first-line mood stabilizers plus an atypical antipsychotic to achieve true mood stability. From what I remember, K has not tried all combinations of the first-line mood stabilizers (Lamictal, Litihium, Depakote, Trileptal, Tegretol). On a BiPolar (BP) parents listserv I co-moderate, one of the most common combinations of medications is Lithium, Lamictal and Seroquel. My son is on a variation of that combo -- Lamictal, Zonegran and Seroquel. Because he's needle-phobic, Lithium really wasn't an option. He is finally doing better after two years of unsuccessful medication trials.

Because of side effects, I personally wouldn't recommend trialing the older APs until you have exhausted all combos of the first-line medications used in the treatment of BiPolar (BP) today.

T, continued gentle hugs coming your way.

 

[susiestar]

Sending gentle hugs. So very frustrated for you that the doctor is booked so far out! Hopefully the call to the doctor will get you in sooner. If not, keep trying to connect directly with the doctor, often they CAN make room for you sooner.

Hugs,

Susie

 

[totoro]

Thanks again everyone... We are hoping she calls us today. So we are going to wait by the phone... which we hate!
husband and I both know what medications we think she needs... which is why we are contemplating the medwash.
So we can get her on one of the first line medications! Do you know how many times we have sat in his office and said, "What about Lithium, Depakote, Tegratol, Seroguel, re-visiting Trileptel?"
I know we had told him we were concerned about weight gain, but we can work with things...
I just truly don't get him. He always pushes a different medication and acts like maybe next time.
Right now the only reason she may go to school is because it is show and tell... She didn't eat last night... it was work all morning to get her to eat. She was up early again and talking nonsense...
She is back to singing about death and obsessing about snakes.
I bought her a little encyclopedia about snakes because she wouldn't stop... so I figures at least she could learn about them. Instead of just making stuff up!!! Or wanting to watch every TV show about them.

OI VAY...