Sad, bummed, help...

Discussion in 'General Parenting' started by totoro, Aug 17, 2009.

  1. totoro

    totoro Mom? What's a GFG?

    I don't even want to post this. I am just so flustered.

    I don't think husband and I have ever sat up at night and talked so much than in the last couple of months.

    K started Lithium almost 3 months ago.
    Her levels are good. She is at 600mg. There are new studies showing great results with lower blood levels. She wasn't doing that great so we upped it.

    Still nothing.
    She is actually doing the same if not worse.

    I am not really into upping it if I am not seeing any improvement. If I had seen some improvement then sure, let's inch it up a bit.
    I am not adding thing on top of it either if I am not seeing anything with it.

    Basically this kid has never been stable. She has cycled into calm. Her AP has curbed the Psychotic Tendencies and the Hallucinations somewhat.

    But even with the AP, we don't know how much it is helping now.

    We had the emergency trip home from Chicago, where she went manic and tried to hurt herself and lost touch with reality.

    She is cycling very fast.

    Just this weekend-

    "I'm tired of being the only 8yo who never knows what to do everyday" crying and shaking in my arms
    Repeating over and over in her bed- "I don't know, I don't know" hitting herself in the head, pounding her head into the pillow.
    Locking herself in her room.

    "Feels her white medicine is messing her up" (Lithium)

    Up racing on Sunday about saving and animal on WWF (world wildlife fed) started night before. Hasn't stopped yet, looks like we will have to do this.

    Had to drag her out of car Sunday after taking her to the Desert Museum which is something she loves, she did pretty well there. Then fell apart once home, because she started thinking about the next thing to do, and couldn't stop.

    Locked herself in her room again, eventually passed out.

    Tried to do some of her Kumon work, this is a new experiment through her therapist, she was shaking and staring into space. Stabbing the paper. We stopped early.

    Couldn't do her Oro-Motor Therapy.

    Then she ran around the room for the rest of the night, from 4 until bath, 7. Then we got her into bed around 7:30 to read.

    Depressed this morning....

    This is how things have been for SO long.

    This is with 2 people at home taking care of here full time. We work on her independence, her control... all of it.

    I don't know where to go or what to do with her medications.
    This is going to come up at the next meeting with psychiatrist in the beginning of SEPT.

    We talk with therapist who is a Doctor, about this.

    I am so sad and lost right now...

    K hates this and has hated it for so long.

    Residential Treatment Center (RTC) is not an option. psychiatrist thinks because husband and I are both home that we can help her better than a hospital could at her age.

    Anyone have any suggestions.

    I don't even know where to go medication wise. I am willing to revisit medications. psychiatrist is willing to do what we want, but I am just tired of having to help make these decisions, even though i want to have the input. Know what I mean?.

    husband and I are seriously thinking about pulling her off of all medications and starting over.

    After giving Lithium a bit longer, if it shows no better results.

    How worse can she get? We have seen it all at this point.:whiteflag:

    I know I am so long winded... thanks if you made it through this.
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    T....are we still sure she just has a mood disorder? Im almost inclined to think this is something more than simple bipolar with psychosis. I hate to even put that into words. Her hallucinations are just so constant and uncontrollable.

    Honestly I think if her hallucinations and delusions were more under control you might see a more stable kid. I think I am going to do some research on what else this could possibly be. And on what treatments could be out there.
  3. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    I wonder if it's time for another opinion? I know the thought of starting over with someone new and repeating all the history is probably extremely overwhelming.. but maybe a fresh set of eyes (and ears) wouldn't hurt?

    Many hugs to you. I know this must be absolutely exhausting, mentally and physically.
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I'm sorry I don't have suggestions. I am not familiar enough with the medications and the issues K is facing to give you any. I would be very sad were I in the same position with my child. I feel your sorrow and desperation through your words here.

    The degree and fast reoccurance that she is loosing touch with reality is frightening. I hope some others come along that have a little more knowledge that can offer you some suggestions.


  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I just did some hurried looking. Of course, there is the schizophrenia but there is also a form of epilepsy called postitictal I think I spelled that It can cause these same symptoms. From what I read it is hard to tell if the person is having these seizures because they are partial seizures.

    Maybe read up on them some more.
  6. SRL

    SRL Active Member

    I was also going to suggest exploring the medical side further: MRI, EEG, etc if they have not been done. Also any genetic testing at all that might be indicated by symptoms or physical features. If nothing at all has helped her after all these years of searching for answers and treatments, I'd be seriously considering a trip to Mayo Clinic for a comprehensive workup.

    How about biofeedback training? It's not going to solve the bigger picture but it might be another tool to have available.
  7. tiredmommy

    tiredmommy Site Moderator


    I think you may be right... perhaps go for a medication wash and then a re-evaluation. There's no sense in continuing the medications if they don't make difference. My heart is breaking for your family. :crying:
  8. Fran

    Fran Former desparate mom

    How sad for you and your little girl. She is really struggling.
    You have gotten some suggestion I would have made. It's disheartening to look at her at this age and wonder where she will be in 5,10,15yrs.
  9. JJJ

    JJJ Active Member

    NIMH just did a study on young children with your difficult child's symptoms. Maybe a call to their Difficult Child office would give you some direction????

    I agree a medwash may help. We are almost done with a medwash for Eeyore. He was on so much stuff that it has taken 8 months so far to safely wean him from most of his medications. It will likely me a full year until he is off of all of them. We have seen improvement and that improvement has been magnified by the gluten-free, casein-free diet.

    Have you tried dietary intervention??? While difficult and a little costly for the ingredients, it has no side effects and you will know with a couple of months if it is going to help her. Feel free to PM me if you want more details.

    I'm sorry she is having such a rough time.
  10. totoro

    totoro Mom? What's a GFG?

    What stinks is that she is still able to hold it together a lot of the time, you know like a lot of our kids.

    We just don't know honestly how much she is hallucinating and how much she has built a world with her hallucinations with her delusions combined with her lack of reality. If that makes sense?
    It is all comforting to her we think.
    Th only reason the psychiatrist, therapist and Neuro-Pscyh think it is not Schizophrenia is because of the fact that they are not command hallucinations nor mean for the most part.
    She is able to still be a part of this world, but is on the edge of this other little world at times, a lot of the time it seems.

    There is never a time when we can't reach her.

    So it is so confusing.

    I am not saying that she may not end up being diagnosis'd Schizo-Affective, or whatever.

    But because in my reading there have been so many kids who hallucinate and are delusional who have BiPolar (BP), I guess I am hanging on to this.

    She did have a Sleep Deprived EEG last year, negative. Not that that means anything.
    But that was all we could get.

    We have talked about seeing someone else, behind out psychiatrist's back. But this very highly recommended psychiatrist takes NO insurance.
    He is supposedly the best.

    Thanks ladies. Janet I will look into the big word! LOL
  11. totoro

    totoro Mom? What's a GFG?

    I have looked into the diet... you know starting the diet is the hardest part! LOL
    Right now we have no Partially Hydrogenated Oils, corn syrup, most dyes, processed foods. No sodas etc...
    I bake almost all treats or buy mostly organic.
    So I am getting closer.

    It is just always one more thing on the list and I admit I am tired right now.
    husband has a special diet now also due to his Arthritis and Gout so it would likely help all of us LOL.

    Thank you all, I do feel better.

    I sat in the School nurses office and talked for a 1/2 hour this morning, cried a bit. She is so sweet. She just hugged me and husband..

    I will look into NIMH, I cruise their site once in awhile.
  12. klmno

    klmno Active Member

    T, I agree with a medication-wash and another evaluation. I wonder if she's not having having a reaction to another medication- if she's on something besides MS's that might be counter-acting the MS's, also. FWIW, the abilify makes some kids worse.
  13. smallworld

    smallworld Moderator

    What are the exact medications and doses she is taking? Is anything generic?
  14. totoro

    totoro Mom? What's a GFG?

    I am just for some reason afraid to ask her psychiatrist for a medication wash. LOL

    I don't think the Abilify is having any negative affect. She has been off and on this since the beginning. This has been the one thing that has ever kind of helped her.
    When we did her one other medication-wash at a year and a half ago, she was only on Abilify.
    The Abilify I just don't know if it is doing what it is meant to do anymore. AP's can peter out.

    I kind of want to put her back on Lamictal. I do well on it. psychiatrist had a funny reaction when I suggested this. She had a comment that kids don't do well on this.
    I said well I have heard of quite a few kids that do.
    K seemed to do well on it before, but her previous psychiatrist kept throwing her on so many other medications that we never got a chance to really see how it was by itself.

    I just want her to have a few moments to be a kid.
    I just want to rescue this kid and I haven't figured out how to.
  15. totoro

    totoro Mom? What's a GFG?

    She is on-
    Lithium Carbonate 300MG BID (600mg total)
    Abilify (Non generic, do they have generic?) 2.5mg BID (5MG total)
  16. smallworld

    smallworld Moderator

    And what is her Lithium blood level?
  17. totoro

    totoro Mom? What's a GFG?

    Last we checked it was 0.5. We go back in the first week of Sept. We didn't check her levels again because of Chicago and psychiatrist being gone.
    But she has increased her dose by 300mg so psychiatrist thinks her level has raised a bit.
  18. Star*

    Star* call 911

    Oh Toto.....

    I am so sorry -and I can't imagine to the degree you and husband suffer with a beauty like K and the disorders she suffers from. It literally breaks my heart to read about it, but I'm a warrior auntie and I refuse to give up..period.

    I have a friend who has a sister that is schizophrenic. Thirteen months ago the woman was out of her mind. She had auditory and visual hallucinations. She was abusing drugs and herself for money for drugs. Her family had given up and detached to the point of walking away. Her brother, my friend couldn't let go. He took her in, took her home and took her to a nutritionist. Sounds goofy right? Years of hospitalizations and pills, and therapy - and this man starts with vegetables and whole grains? Ack. We were not impressed.

    Well I'm here to tell you that she's now babysitting for them. Attending church, and taking some supplements and vitamins. I'm not sure what all is involved, but his logic was pretty simple. If you've tried everything else - and it's failed, get basic. Start by cleaning the system out. (Similar to your idea of going off all medications) Then diet eliminations - well - you eat organic already so that's a bonus. But what supplements could be missing that may not have shown up in blood work? What's missing?

    A lot of what I'm reading about schizophrenics and from what my friend has told me about his sister is they need MEGA doses of certain B vitamins. I think he said B-3 maybe? I tried to do a search for it and came up with this link I'm not a freak for holistic arts, but it couldn't hurt to check out the article part way down that talks about severely disturbed kids. I think if you look it says something about B vitamins.

    I know K is an exception to almost every rule but if Lithium is not working - and should - that would say to me - it's not working. And if she can hold it together some times and then's kinda like a car with a leaky oil pan. YOu put oil in the car - and it runs okay until the oil runs out then it doesn't run right. With K - you put food in and she gets micro doses of vitamins or nutrients and her body stores stuff or MAYBE is storing something IMPROPERLY - and when the reserves are gone? IT's like the car - she stops working.

    As far as the Residential Treatment Center (RTC)? No. But as far as you and DF all the time, all the time all the time? No. I think you should hire a nanny or a manny or a NannyMcFee person to give you a break and give K a break too. Nothing personal - but You 2 could use a break and SHE could use a break too. Plus if you were to hire someone that was say - a resident psychiatric student or an herboligist, or a um...(stupid brain) nutritionist that would recognize some of her symptoms....that could assist you in video taping or documenting? Maybe what you are seeing as psychotic episodes are actually - something else???? (trying to think outside the box) NOT playing it down - like when elderly people have a dementia moment they call it alzheimers - and now they believe it's a type of diabetes of the brain.

    Please please don't take that I'm taking ANY of what K does or what YOU endure as minimizing this I'm just throwing other things out for consideration....maybe being hopeful that her hallucinations could be caused from something no ones discovered yet. And that something one of us says here would put you and your husband on a path to her finding wellness. THat's all.

    When she says I don't know I don't know......tell her None of us know either and it's not just her. Then hug her from me.....huge hugs. I must go find heart glue now....poor baby. You're a tough Mom Toto. Very Very tough...and she's a really really tough kid.

    Sending donkey angels.
  19. Josie

    Josie Active Member

    I am sorry about K.

    I am in a similar postion with my difficult child 2. We are trying everything, consulting many doctors, and nothing is working. Her symptoms are different than K's but she is almost completely unable to function normally due to physical and mental problems. While we have all of these doctors involved, I also have to do lots of research to figure out what to do. So I think I know what you are going through.

    Reading your post, I have two thoughts. One, if K says the medicine is making her worse, that would carry a lot of weight with me. I don't know about lithium, so maybe that is expected in the beginning stages. Two, celiac disease is linked with schizophrenia and other mental illnesses. If you are already making everything from scratch, you are doing the hard part of the girlfriend diet. You just need to figure out your substitutions. Here is an interview with a celiac expert in this month's issue of "Living Without". Although he is mostly talking about celiac disease and not gluten intolerance, it is very possible that the same thing would apply with gluten intolerance. I turn into a mentally unstable person if I have any gluten now and I am not diagnosed with celiac disease. difficult child 1, also only gluten intolerant, turns into a difficult difficult child from a typical teen if she has gluten or milk.

    I get what you are saying about being tired and it is one more thing. I need to do the complete elimination diet with difficult child 2 and I am putting it off because we are making medication changes so it would be hard to tell but also because I am tired and it is one more thing to do.

    I hope you can find some help soon.
  20. totoro

    totoro Mom? What's a GFG?

    Once again thank you all
    I just sat and talked with husband again about the girlfriend/CG diet. He is fully for it. But of course it means me doing the work. Nothing against husband but I am the food person. :)

    I just need to wrap my mind around this one more thing. Research and likely PM some of you ladies. :)

    Also I would need to get K's mind wrapped around a change.

    I have looked into the vitamins, but not enough.
    We have upped some of hers. I have about 4 books on Ortho-molecular medicine- which is all about the vitamins and Mental Illness.

    I know Star*------- This is therapist's number one on our to do list! Find help! We have such a long list, I am sitting here finishing up paper work for school, horse therapy etc... and then going to pick them up. Which means home therapy!

    But therapist has a couple suggestions for help.
    I know we need help.

    Next time I am lying with K hugging her and telling her it is all OK and we will not leave her... I will add an extra hug.