K's medication-wash

Discussion in 'General Parenting' started by totoro, Nov 13, 2009.

  1. totoro

    totoro Mom? What's a GFG?

    it has been over a month. We did it with the support of psychiatrist, therapist, School Nurse and the School plus her Teacher.
    She has been on an AP since December of 2006. She has developed severe or worsening drooling, tongue thrust, tics, movement issues, internal agitation, inability to sit still, weight gain that we have had to to monitor and constantly regulate.
    Many other issues that I can't think off of the top of my head. Of course the doctor's poo-poo'd these things for the longest time.
    But I journal, I keep track.
    Our current psychiatrist said, "well lets go for it and see"
    We also just wanted to see what she is like now, who she is, what her actual symptoms are, what we are actually treating?

    She has just not gotten better and our gut has told us she needs to be seen without medications because she has gotten older and changed.
    Everyone has been wonderful.
    The first week was great! ;)
    She started going back to herself after that, we knew she would, but you know that hopeful feeling?

    She has changed though so we do not regret doing this and everyone still agrees.
    Her hallucinations have decreased almost to nothing! :surprise:
    Her delusional state has changed also! All of the side affects from all of the various AP's have slowly gone away. Or decreased :D
    I don't know if the Hallucinations and Delusional state has just changed due to her Mental Illness just changing with age? Could be.

    She is raging and violent. She is unfocused. She is emotionally labile. Giddy, up and down. He psychiatrist felt our wonderful support system and full time care at home was better than doing this in an Residential Treatment Center (RTC) or hospital.

    This past week we trialed Focalin, it really helped a lot, but it caused sleep issues, we will try it again once she is at a therapeutic level of a MS.
    We did it maybe to help while we titrated up on a MS.

    So now we are titrating up on Lamictal, VERY slow, our psychiatrist is cautious, 5mg 2 weeks, 10 mg 2 weeks and then evaluation.

    I don't think any other Teacher or School would have let her stay in the class with her issues. We are so lucky.
    Her Teacher told me she will do what ever it takes to get her through this and to make it so husband and I can have an OK night when she gets home.

    She has no homework, Teachers decision. They brought in an aide. None of this is on the IEP, just to help for now.

    She asked to go back on medications. She is afraid of what is going on in her head, the chaos. She does not like being out of control.

    I know some feel like AP's are the only answer, but she has done most. I will not compromise her health and mind more. Sometimes a medication class just doesn't work for someone. Her therapist who has her PHD and specialized in Psycho-Pharmacology is convinced she needs to be off of AP's also.
    I am not willing to keep messing with my 8yo in this way. She sat and drooled or paced ticcing' all over the place... not OK. Not adding Congentin to fix a horrible side affect and then add a weight pill on top of it.
    Wouldn't do it to myself, why would I do it to my child?

    Sorry this is way too long as usual!:whiteflag:
    Things are not good but we have answers and a new direction. We can't go anywhere or do anything at this point. Little tiny outings very close to home.
    But this is my fight and I am willing to do what ever it takes to help my kid.
    Last edited: Nov 13, 2009
  2. smallworld

    smallworld Moderator

    You are one brave and smart, mama!

    We've come to the same conclusion you have. APs are not necessarily the answer. Unless I had a child with unrelenting psychosis that couldn't be treated without APs, I'm not sure I would use them.

    We're in the process of weaning our kids from APs. We've decided the long-term side-effect profile is too risky. J is already done with Seroquel. We will try to wean M from Zyprexa beginning in January once her Lamictal dose is higher (Zyprexa saved her from a life-threatening eating disorder, and I am grateful for that). A takes 25 mg Seroquel for sleep, and we're trying to come up with an alternative.

    Lamictal has worked wonders for all three of my children with zero side effects. I hope it works well for K, too.

    You guys deserve only the best. Hugs.
  3. totoro

    totoro Mom? What's a GFG?

    Thank you SW that really means so much. Our therapist said that she doesn't have that many parents who are willing to do this.
    I understand, it is so hard. Our lives have been horrible. I haven't been on the board much, just here and there, because I have been trying to protect N and K.
    I have lots of tears and times questioning myself. Lots of anger at life and why this has to be.
    But through it all I just keep telling myself that we have to help these kids. Every time we have a tiny bit of good it just send her over the edge... the only truly good thing is that her teacher fully agrees that the medication wash has changed in many good ways as well.

    I am in the process of starting a support group. I need it. It is mostly Autistic children so far, but it is all parents in need of support from each other.

    What saddens Jeff and I so much are those times when you have such a hard time really liking your child...
  4. Josie

    Josie Active Member

    It sounds like you are doing the right thing. I hope you can figure out the right path soon.

    The support group sounds like a great idea. It probably doesn't matter too much what the diagnosis's are. Just to be around other parents who get it would be wonderful.
  5. Steely

    Steely Active Member

    Toto, you have been on my mind all day. I was almost getting ready to exit off the board, and I saw your post. Now I know why you were on my mind. Hugs.

    You are so, so wise about not only K and her medications, but the support that she needs. Moving to AZ just to get her the help she needs speaks volumes about your intrinsic mama wisdom. Then you look at how you have networked and found her only the best resources and I am in awe. You are the true definition of a warrior mom.

    I hope you are able to take as much time as you can for you, and rekindle you soul and spirit during those down times. K is going to be OK because she has you and Jeff as parents.

    Many, many hugs..........
  6. miles2go

    miles2go Member

    Hey totoro, you've been one of my main BiPolar (BP) resources. I am sending some power your way. I thought of starting a thread re:my difficult child titled
    BiPolar (BP):cold->(bad sleep)->(meltdown), but it seems small potatoes now.
    Me--married dad
    difficult child -- BiPolar (BP) boy, age 8, abilify
  7. totoro

    totoro Mom? What's a GFG?

    Aw, Miles!
    Nothing is small Potatoes here in our world!!! (I know I lived in Idaho for over 20 years)
    We all have something to say and a reason to feel.
    Sickness is a huge trigger... and sleep or lack of sleep is a hoover fest!
    I am a Momma Bear! I have been lacking in sleep this past week... not so fun Mom. ;)

    Thanks Hope---
    Thanks Steely... you are a warrior who inspires me and has for years! Through all of our ups and downs.
  8. ML

    ML Guest

    I am so happy you had this type of support. I agree you are doing the right thing, mom. Please give her a hug from her board Auntie. Love, ML
  9. DammitJanet

    DammitJanet Well-Known Member Staff Member

    T....I also think you are doing the right thing. Something had to give for our lil Keke. I hope and pray that lamictal is the answer. Hugs.
  10. otisgirl

    otisgirl New Member

    Also, keep in mind that it takes a lot longer than a month to withdraw from being on an AP for that long so a lot of the symptoms you are seeing - raging, emotional up and downs etc. can all still be withdrawals form the AP.
  11. pepperidge

    pepperidge New Member


    I think it is a good idea to do a medication wash particularly when the side effects are awful.

    It is interesting, we tried our 12 yr old back on stimulants. About three years ago or so they were a disaster. But he is up to 27 mg concerta with no tics and no increase in obsessiveness. And no other medications on board. I didn't want to try them but the psychiatrist kind of convinced me. We have been able to handle the awake issue with melatonin. Also I think that diminishes a bit over time. So maybe focalin will help K.

    My fingers are crossed that Lamictal will help, and that you might find a stimulant that will help to.

    We too are weaning our kids off APs. My youngest is off Abilify now, and my oldest is now only taking .25 mg of Risperdal. We will d/c that soon too. (I need to update my sig!) I don't regret that they were on them--they definitely helped, but the less medications we need to give the better.

    I hope you don't endure too much trama and chaos. If the raging continues but isn't on a daily basis maybe even an AP prn would be better than a daily one.

    I think you have some options, wishing you the strength to see the medication wash through and really see what you are dealing with. And 8 will not be the same as 12 either.

    Just rambling on, but my thoughts are with you.

  12. susiestar

    susiestar Roll With It

    Sending lots of support and hugs to you. medication washes are so hard. Wiz never managed a full one. He has gotten so suicidal every time we have done a medication wash that it is unsafe to have him go through it. If we push it, even on an inpatient basis, he makes serious attempts at suicide. Even the hospital staff were scared the last time. Big Burly guys with awesomely calm and caring attitudes were afraid they couldn't keep him safe.

    So I am in awe of your efforts with K. PLEASE remember to take time to recharge.
  13. Big Bad Kitty

    Big Bad Kitty lolcat

    You and K have been on my mind! How difficult all this must be. Keeping all of you in my prayers.
  14. KTMom91

    KTMom91 Well-Known Member

    Many, many hugs to you and the family. Your strength and determination to give your girls the best life possible is inspiring.