Can I get off the Roller Coaster??? Long

Discussion in 'General Parenting' started by totoro, May 20, 2007.

  1. totoro

    totoro Mom? What's a GFG?

    even for a few minutes??? The past week and a half has been up and down to say the least!
    mother in law in the hospital for 5 days... she is OK now. husband bestfriend's brother killed himself (he has kids and a wife), one of my old highschool friends died of a heart attack.

    Then the kid's... difficult child 2's Occupational Therapist (OT) feels that her sensory issues are much worse than difficult child 1, and very opposite. One is sensory seeking while the other is sensory avoiding... they have similiar sensory issues as well, noise, vision. So they feed off of each other and elevate each other... basically make each worse. She is struggling with how to work with this issue. difficult child 2 will shut down while difficult child 1 will become anxious... it is all one big conflict!

    difficult child 2 started hippotherapy, awesome! The first real great thing in awhile... she is going to do one month or so of Hippotherapy and then progress to Therapeutic Riding, with another difficult child!!! Yeah.

    I met with the public school regarding difficult child 1 starting kindergarten, I went fully armed with the facts, just to talk about if difficult child 1 would be a good fit in the school etc. They had the principal, psychologist, kindegarten teacher and the Special Education teacher!!! They listened to everything I said, really were uninformed on Early Onset Bi-Polar (EOBP), and the situation in our area. They suggested a shadow/aid for difficult child 1 so she can transition seemlessly. The psychologist said I think we need to start with a 504 plan. I said if she starts having issues that need interventions I will be filling for an IEP and they said OK. They will not ask for any evaluation, because my are from the people they would send me to anyway... The nuero-psychiatric report says she needs accomodations etc, and that is who they use. I felt really good leaving, I know it isn't perfect and they don't have a lot of resources, but they are trying to help. They thanked me for being so informed about difficult child 1 and prepared! I still have to meet the PSR guy/girl, I have used them before and didn't like them too much but that was pre-diagnosis for difficult child 1.
    Our therapist was blown away, she said the school never offers these types of things here, let alone shows up with all of those people for just a talk about entering the school!!! I had called and just gave a brief overview of difficult child 1.

    Then psychiatrist apt on Friday, she talked to difficult child 1, told her she heard voices and they told her to hurt herself, and that she tried to hurt herself at times... :frown: She hits herself sometimes. She told her she was sad sometimes... husband said "I think it is time to try another Mood Stabilizer" She agreed with Lamictal!!! The meeting went pretty well, 45 minutes no rush. I then said I have asked for blood work and noone will do it, she said OK!!! Then husband said is there any easy way to get ahold of you when difficult child 1 is having issues? Or when we have a medication question, like an e-mail??? She said yes!!!

    So we started Lamictal Saturday, I saw the Lamictal thread! 12.5mg to start, is that a good starting point I belive we are doing this for a week, and then up another 12.5...etc. To 50mg will be our next apt. She also gave us enough sample to get us through till next apt!!!

    Then the other night difficult child 1 started talking to the voices in her head in front of husband, she usually only does this with me, they were telling her to die... :crying: She told the "Mean Fairy" she would die, then told me she was just telling him that so he would leave her alone... and that she really wasn't going to die, don't worry Mommy. I think this really hit home for husband, he was a bit skeptical up till this point... didn't want to believe. My poor baby. psychiatrist thinks we may have to change the Abilify, if it isn't touching the Auditory Hallucinations and she is still slightly raging... after we get the Lamictal up to therapuetic range.

    So it has been 2 days and we have seen nothing so far, which I read is to be expected. She has been cycling pretty bad, her mixed states are so extreme and she is so close to full blown mania again! The other day she was trying to get out of the car, kicking my seat throwing stuff at my head, this happened 2 days in a row, luckily we can lock her door from the inside.
    Anyway I am sorry for the length, I have been so busy, with all of the apts, and trying to get people together, phone calls etc. This week is worse husband is gone and I have to take her for her first blood draw, with difficult child 2 also. I told them I wanted Emla.

    I just feel overwhelmed, I am also looking for a babysitter who can work during the day and a pre-school for difficult child 2...

    Thanks if you have made it this far...
  2. SRL

    SRL Active Member

    Talk about a good news/bad news thread! Whew! Poor little baby.

    I'm really surprised that they could assign her with an aide if she only has a 504 plan. You might want to check into that.
  3. flutterbee

    flutterbee Guest

    (((HUGS)))) You have so much on your plate. You need a break! Good luck on finding a babysitter! It does sound as though you had some VERY positive meetings, though. :warrior: I'm very impressed with the school thus far. I'm keeping my fingers crossed that it continues. I'm thinking it won't be too long until the 504 plan is changed to an IEP. I'm so relieved for you that psychiatrist started a mood stabilizer. Phew/whew!! I'm keeping my fingers crossed that this starts difficult child on the road to stabilization.

    Do you have a child lock on your car doors? Eventually, she's going to figure out how to unlock her door...or maybe you meant that you had the child lock on.
  4. totoro

    totoro Mom? What's a GFG?

    They aren't assigning her the aid, I am, they suggested it, they told me the place to use, the place that other people use, and said we should get started this summer so the aid and difficult child 2 are comfortable with each other. So I said that is a good idea. This was before the psychologist said lets do a 504 plan as well.
    I believe this will go through my insurance, and the school will OK shadow/aid to come in??? There is basically only one place in town that has people qualified to do this sort of thing... I am going to look into all of the details, I was just excited that they were even into the idea.

    I realize I need to get all of the details before I am too excited. But it sounded good.
  5. totoro

    totoro Mom? What's a GFG?

    Thanks Heather-
    yeah the child locks, a mini-van, we can push a button from driver side and lock out sliding doors. It basically overides the door.

    I don't mind pushing for an IEP, but I just wanted to give her a chance to see if she needed any interventions, you know. I know 504's don't mean squat, but I think we could get the IEP pretty easy with our diagnosis's.

    We will see...
  6. flutterbee

    flutterbee Guest

    The school is required to pay for the aide that will assist difficult child while in school.
  7. totoro

    totoro Mom? What's a GFG?

    That is what I thought. I just know how backwards our town is, I could just see me ending up paying!!! LOL I didn't want to get my hopes up
  8. SRL

    SRL Active Member

    I am excited that they are open, but you still should check in on the Special Education board. If the school is suggesting the aid, then the school should foot the bill, arrange for the aide, train the aide, and employ the aide. I believe that's the law.

    This may not seem like a big deal for this year if it's coming out of your insurance but there are caps on mental health payouts with many insurance companies and you've got a long ways to go with your girlie.
  9. flutterbee

    flutterbee Guest

    Plus, the insurance may not pay for it if it's considered educational.
  10. DammitJanet

    DammitJanet Well-Known Member

    I hope the lamictal kicks in fast for you. It probably will take a bit though to get anywhere near a therapeutic level because they start so low.

    Has your dtr tried seroquel before? Just asking because it seems one of the milder, but in my opinion better, AP's out for helping to control mania. This is purely my opinion of course based on I cant stand the others but can take a small dose of seroquel.
  11. totoro

    totoro Mom? What's a GFG?

    Yeah you both are right... I need to look into it. I am going to call the place and see what they generally do in regards to this situation. They are pretty honest about getting help financially.
    I have an e-mail into the school, so I will ask for specifics etc.

    Thanks guys I feel like such a newby with this school stuff... our therapist will help us as well. I need to go back and re-read the 504 and IEP info etc.

    I would rather the school pay for everything!!! My bills are high enough... yikes.
  12. totoro

    totoro Mom? What's a GFG?

    I have read a bit about Seroquel... it is on my list of options!!! How is it for weight gain??? We are concerned about that, she has gained 10 pounds already since dec. Averaging 2 pounds a month!!! Which is not looking good for a 5 yo's future. She is self conscious already, because of course it goes right to your belly. Poor thing.

    I just hope she can tolorate the Lamictal...
  13. DammitJanet

    DammitJanet Well-Known Member

    Its not as bad as the others I dont think. I refused risperdal or zyprexa for those reasons. Never tried abilify so I cant say. I take a very low dose of more than 75 mgs. More often no more than 50.
  14. smallworld

    smallworld Moderator

    T, I'm glad you're making some progress. However, the kinds of hallucinations you're describing are considered an emergency and shouldn't wait for an AP to be raised. difficult child 1 is clearly not at a therapeutic dose of Abilify, and the psychiatrist should not hesitate to increase it. Because Lamictal will not touch hallucinations, it seems to me that could wait a few days until you get her Abilify dose up so it is addressing the hallucinations. Then you could start on your path toward increasing the Lamictal. Just a thought . . .
  15. oceans

    oceans New Member

    Glad to hear about the school! That is great that you are finally getting Lamictal on board, too. I am not certain why there are blood draws, as Lamictal does not require them. I agree that the Lamictal will not take care of the voices, and that the Abilify would be what would take care of that at the proper dose. I am not familiar enough to know what the dose of that one would be.
  16. Alisonlg

    Alisonlg New Member

    I'm so sorry for the roller coaster you've been on! :::hugs:::

    It sounds great that the school sounds like it's on board with you- I hope they stay on board throughout her career in the school system! That would be wonderful!!!! What a help an aide will be!

    How sad to hear about the voices. Such terrible things they're saying to such a precious little girl. :frown: I hope you can get those under control ASAP. I see you've got Seroquel on your list of considerations. I know medications work differently for everyone, but I can say that my son has had far less weight gain on Seroquel than the Risperdal he was on. His appetite is basically normal on the Seroquel!!!

    I hope you can get off the roller coaster soon!
  17. totoro

    totoro Mom? What's a GFG?

    Thanks everyone...
    I know the Lamictal will not touch the Auditory Hallucinations... she has always had them, it is just sometimes like lately they get mean and worse. We have to go to pediatrician. tommorrow for blood draw so I will talk to her about it. (blood draw is for my peace of mind, no-one has done a base line yet!)

    The school psychiatric just e-mailed me with questions, and wanting to get paper work together for 504 plan!!! I made sure and said again what her exact diagnosis's were and said I was going to contact the mental health place that has the aids, and that the school pays for this, is my understanding right??? So I hope she writes back yes! And I don't have to start a battle! I also let her know on our nuero-psychiatric report it states difficult child 1 is going to need an advocate/aid to help her and an IEP or 504 Plan. As well as numerous other accomadations. This is the same place they would send us to, to be tested. I was very NICE!!! And thanked her up and down... Gosh I hope this works out!!!
    difficult child 1 told me the mean fairies pushed her into the stairs this morning...hmmm. I am going to e-mail psychiatrist!!!