New to board-need input on daughter's symptoms

Discussion in 'General Parenting' started by dcmckay, Apr 13, 2009.

  1. dcmckay

    dcmckay New Member

    Hi, I am new to this board. I have a 14 yr old daughter with the "alphabet soup" of diagnoses. Started out of age 3 with- ADHD and PPD-not otherwise specified. Age six, added Bipolar. Since then (15 hospitalizations and 3 RTCs later) she carries the following diagnoses: ADHD, Pervasive Developmental Disorder (PDD)-not otherwise specified, ODD, Obsessive Compulsive Disorder (OCD), complex partial seizure disorder of limbic origin, cerebral dysrythmia, frontal lobe disorder, temporal lobe disorder, multiple LDs, and most recently, schizoaffective disorder. In the last year, we have seen a dramatic decline in her development and behavior. It is almost like she has some form of dementia, similar to Alzheimers. She cant remember things. She has become totally dependent on me for EVERYTHING! She can't (or won't) even dress herself without my assistance. We saw my daughter psychiatrist last week. The 4 hr drive there nearly killed us all, due to daughter rages, hitting, kicking, grabbing steering wheel, gear shifter, parking brake, etc. I had to bite her arm to get her to let go of the steering wheel, while we were on a busy interstate, sandwiched between 2 semi trucks. My husband was in the back seat trying to restrain her, but he couldn't keep her from wiggling out an arm to grab what ever she could. It was a nightmare! Anyway... the psychiatrist said that he feels like she is progressing rapidly to "full-blown schizophrenia". He is encouraging us to place her in the state hospital as soon as possible (as she has maxed out our mental health benefits on our insurance). He also ordered an MRI, just to make sure there is not something else going on that is causing the profound regression (got results Friday-NORMAL). Needless to say, we are devestated. She functioned fairly well until about a year ago, when puberty hit. That is when we noticed a dramatic decline in her functioning. The last few months, it is like we are losing her. She is slowly slipping away into her own little world. She has also become very violent, aggressive and impulsive (like trying to jump out of the car or biting us for no apparent reason). Does anyone have any thoughts on what may be going on with her?? We are desperate to not have to place her somewhere long-term, but feel that we may have no choice soon.
    Thank you!
    Mom to daughter, T, 14-current medications: Zyprexa, Tegratol, Clonodine, Doxepin, Amantadine, Diuril.
  2. smallworld

    smallworld Moderator

    Cindi, welcome! I'm glad you found us, but sorry you needed to.

    If I had a child with severe symptoms that seemed to be worsening, I'd contact the researchers at NIMH in Bethesda, MD, to see what they could do for my child. They take on very complicated cases plus the cost of care, travel and accommodations are covered.

    Just wondering -- have there been any recent medication changes that you can tie to her raging and decline in development? Has she ever been stable?

    Again, welcome.
  3. Kjs

    Kjs Guest

    I am sorry you are dealing with this. I cannot imagine what you are going through.
    I cannot offer advice, just something to think about.
    Does or can her behavior cause harm to your family or herself?
  4. dcmckay

    dcmckay New Member

    Smallworld-Thank you! I will check in to NIMH. I thought that they only did research studies? As far as medication changes, she has been in psychiatric hospital 7 times this school year alone and has had multiple medication changes. She is on totally different medications now than she was a year ago, when she started to regress. She was stable up until that point.

    Kjs-yes, yes, yes!! we have had to call the police multiple times and it is her violence and aggression that usually leads to her hospitalizations. One night, she literally tore the oven doors off our built-in double oven in the kitchen and was swinging them at us. She hits, kicks, throws things, bites, etc. She also bites herself or hits her head when angry or frustrated.
  5. klmno

    klmno Active Member

    Hi and Welcome!! My heart goes out to you and I've not had the same situation so I'll just throw out some ideas and thoughts- take them as suggestions or forget about them as you deem appropriate. I think I would hold off on the state hospital as long as possible, if you are talking about a very long term commitment. Some state hospitals might be good for helping diagnose and getting medications improved if you are talking about a 1-3 month stay. I definitely don't think these doctors have gotten the accurate diagnosis yet.

    If she hasn't already seen an handful of neurologists, I think I'd be getting her there as quickly as possible and then maybe another one for a second opinion. It might be useful to get her in for an evaluation by a team (a multi-disciplinary evaluation or MDE) at a Children's Hospital/University. (This is out-patient usually.) I like Smallworld's suggestion about NIMH and she needs complete neuropsychological testing, too. I think it would be a good idea to start making phone calls to pursue all these things though because chances are, they all won't come through or at least, they all won't come through at the same time and I think it might be a good idea to get a lot of different experts' eyes on this one.

    Have you applied for disability for her? You could try that. Another useful thing- if you can get her in a state hospital for 30 days (not forever), you can apply for medicaid for her that will cover more and it will be based on her income since she's considered out of the home, even if the family's income is too much to qualify for medicaid. This might vary by state, but you are going to need some help with her so I'd start filling out applications now.

    If you get comfortable revealing what state you are in, others here might be able to PM you specific places or processes that might be helpful.

    Here's a ((HUG)) for all you have gone through already and KUDOS for sticking this out with your daughter.
  6. smallworld

    smallworld Moderator

    What medications/doses was she taking when she was stable?
    Why was she switched from them?
    What doses of her current medications is she taking?
  7. SRL

    SRL Active Member

    I was going to make a similar suggestion as Smallworld, only because I live in the midwest I'd be heading up to Mayo Clinic. They have one of the best neurology departments in the world and the people I know who've been to the clinic say they are really set up so that out of town patients can get through their appointments in a short time period.

    Is she really on 6 medications?
    Last edited: Apr 13, 2009
  8. Star*

    Star* call 911

    Hi -

    I did not know one small person could have so many co-morbid diagnosis's. I'm so sorry for her and you. I think Smallworld gave you some fantastic advice.

    My son (now 18) has also been in numerous hospitalizations, group homes, been on 65 medications, combos of same, Residential Treatment Center (RTC)'s multiple alphabet soup - how can you diagnosis a person with BiPolar (BP) at 6? kinda questions went through our minds too.

    At some point many times - we were told to consider our lives without the possibility of him ever being a productive part of society. Like you, we too said - there is a way to reach him - we just haven't found it yet. For years we tried, and oddly enough when we finally admitted defeat and began our roll as parents who were detaching - he started to turn around.

    I have a friend who's sister has been diagnosis schizophrenic. She was unmanageable and spent years in and out of hospitalizations, was violent, drug addicted and so out of control it seemed a lost cause. She now is on medication and some herbal supplements (they found out she has a gluetin/casein allergy) and she's well enough to drive, babysit and helps out at their church. Nothing short of a miracle there.

    You can learn how to do a therapeutic hold (we had to). I have had my nose broken twice from his rages/fits. Recently due to sinus problems my doctor asked how I broke my nose - she was nearly pale when I told her. But I figure if you haven't had a life like ours you're less sympathetic and empathetic to others going through the life we live every day.

    I'm glad you found us, and I'm very curious to find out what is going on - you said she had an MRI and it was I would guess they were looking for something organic......DO you suppose there is a crossover - in her medications? Something maybe doesn't get along/added recently?

    Wish I had something more concrete for you other than been there done that - but always here to listen.

  9. dcmckay

    dcmckay New Member

    I will do my best to answer everyone's questions. Thank you so much for your input! We feel like we are at the end of our rope with her and dont know where to turn.

    What medications/doses was she taking when she was stable?She was stable for years on Lithium, Risperdal and Depakote.
    Why was she switched from them? She had to come off Lithium d/t kidney issues and Depakote d/t elevate liver enzymes.
    What doses of her current medications is she taking?Zyprexa 30mg bedtime, Tegratol 400mg 2xday (last level 8.2), Clonidine 0.1mg bedtime and prn, Amantadine 100mg 2xday, Doxepin 100mg daily, Diuril 500mg 2xday (takes d/t elevate calcium and protein in her urine).

    We live in the middle of the Texas Panhandle, several hours away from any university with a child psychiatry department. She used to go to Tx Tech in Lubbock, which is 2 hrs drive, but the head of the department there told us to find a new dr after a yr of treating her, because she didn't know what else to do for her. We have literally seen EVERY psychiatrist within 200 miles of us. We now drive to Oklahoma City monthly, which is about 4 1/2 hrs away, to see a psychiatrist. Part of the problem we face, is that we have exhausted all our financial resources trying to get her help. We now literally live payday to payday and I have almost no PTO time to take off for appts, d/t her being in the hospital so much in the last year. We have recently gotten her on a Medicade Waiver Program (MDCP), which will give her Medicaid starting May 1st (Thank God!) She will also get about 30 hrs a week of attendant care to help us with her in the evenings and weekends. We are praying that the addition of this program will enable us to be able to keep her home a little longer. The state facility that we are checking into is a short-term facility, with the average stay being 3 months, but they can stay longer, if needed. I personally think that she needs to be weaned off ALL her medications (except the Diuril for her kidneys) and then see what symptoms she has and re-evaluate her then. She has been on some medication, and usually several medications, continuously since she was 3 yrs old! I sometimes wonder what she's really like under all those medications, but anytime we have tried to wean her down, she becomes so out-of-control and can't be managed (or she tries to kill herself). Private insurance has never let her stay inpatient long enough to reall accomplish much with her medications. She did get to stay at Meridell Achievement Center(Residential Treatment Center (RTC)) in Austin for 30 days last year and they did a complete neuropsychologist evaluation, which is where we found out about the cerebral dysrythmia, frontal and temporal lobe disfunction and seizures.

    (Sigh) Not sure what else to say. It has been a very, very long 14 yrs and I am exhausted. I'm tired of fighting insurance companies. I'm tired of fighting the school system. I'm tired of fighting dr after dr. I'm tired of having to explain to my boss why I need to miss another day to take her to this dr or that dr. I'm just plain tired of it all!! I just wish for my daughter to get stable enough to stay home. To not be violent or suicidal. I know she will never be "normal", but will stability be something we ever see again??
  10. klmno

    klmno Active Member

    That info is very helpful. The medicaid should help a lot and you might need the 3 mos stay in the hospital (psychiatric hospital)- as I said before, it could lead to being able to change the type of medicaid she's on so if she needs a Residential Treatment Center (RTC) after the psychiatric hospital, it should cover most of it. If she goes to that psychiatric hospital, call medicaid after she's been out of the home for 30 days and check.

    As far as medications- my son has been on lithium for almost 2 years. He has had depakote, zyprexa, and tegretol as add-ons, among others, off and on for the past 2 years, too. (The lithium stayed constant.) At least for my son, NONE of these other medications made a difference anywhere close to what the lithium has made. Until you can get your daughter in a place safe enough for a medication-wash, I'd suggest talking with the psychiatrist (psychiatrist) about the possibility of a different type of mood stabilizer. Maybe lamictol and risperdal as an add on, for instance.

    I think there are a couple of members here from Texas- maybe they can offer help as far as professionals and places and state policies/processes that will help.