Totoro?

Discussion in 'General Parenting' started by smallworld, Feb 22, 2007.

  1. smallworld

    smallworld Moderator

    How is your difficult child today? Are things a little calmer?

    Just wanted you to know that I was thinking about you . . .
     
  2. tiredmommy

    tiredmommy Site Moderator

    I have as well...
     
  3. pepperidge

    pepperidge New Member

    me too...let us know how the trileptal is working and the cogentin...
     
  4. totoro

    totoro Mom? What's a GFG?

    Thanks you guys... well I think husband is much more of a wreck than me..he is still out of town working. Poor guy!!! Well I think the Cogentin helped a bit yesterday afternoon, her mouth issues seemed to calm donw a bit, her toungue went back in her mouth and it closed a bit!!! Drool lessened, I put some antibiotic around her mouth and it looks better already. (it is actually my cats and the doctor had told me it was really good and go ahead and use it, lol)
    She was horrible last night up and down depressed all over over the board, having "bad thoughts" freaking out, "I don't know what I am feeling!!!" "I can't calm down" Kicking and running circles... I got her in a bath, she screamed, (she usually loves the water) "I don't want to wash myself, I don't want anyone touching me, Mommy hold me!!!"

    I put a movie on hoping it would let her little mind relax, she kept kicking and was restless the whole time. She talked to husband and was so down, it broke his heart....
    Finally she kind of sunk into a low calm... and just laid there and watched Little Bear with easy child.
    She took her Tileptal went to bed but was a bit wired I let her hold a book, I think she passed out pretty quickly though, she was tired.
    This am she was doing pretty good, kind of wired, but after Occupational Therapist (OT) about 11am she started getting worked up and agitated again won'tleave me alone for a second, angry, bored anxious...
    So I broke down and am letting them watch a movie... I am so tired and don't want to get mad.
    She took the Cogentin and .25mg of Risperdal this am. They said give her the Cogentin for a couple of days and see how she does.
    She has this week off of school also for which I am kind of thankful, she only goes 3 days, but she is so overwhelmed right now.
    I am trying to be patient, the Trileptal should take a few days to kick in right???

    Thanks for asking
     
  5. pepperidge

    pepperidge New Member

    I am not sure how long it should take for the Trileptal to kick in--we saw a negative reaction within a few days, so maybe you will see something, hopefully positive, soon.

    About the tv thing, I think you're right, this is not the time to be the perfect parent, this is the time to think about how can I help her get through the day with as little frustration and meltdown as possible. And how can you meet your own needs to have a little time to recoup and destress. When my son was raging, I was very tempted to "punish" him by taking away his video priveleges but I learned that one thing that helped calm him was this incredibly boring video he liked of a train going through the alleghenies. Go figure. So you do what it takes. A more challenging activity followed by a very calming activity.

    Does she like to listen to music? Would she find it calming to have a little private place (my kids have cleaned out the bottom of one of the closets and set up a little den in there to go to at various points). Make a bed tent? or something that she would want to go to--don't use it as punishment or time out, make it inviting to her.

    glad the cogentin seems to be helping.

    hang in there. we're sending good thoughts your way.
     
  6. totoro

    totoro Mom? What's a GFG?

    We have a private place for her 2 as a matter of fact!!! We even got her a headphones, music, she can use them if she wants, she has one space with a rocking chair. And the other is her room with a seperate area where she can swing hide relax etc, but when she gets really bad, she just doesn't want to be alone. I think the bad thoughts and anxiety get to her. Her leapster or a movie really help shift her mind to a more calming place. The hottub really helps at times also... but half the time she makes us all get in as well, which is nice is I don't have cleaning or a project... or don't feel like getting splashed with hottub water!!!

    Occupational Therapist (OT) finally said today I think we need a sitdown with all involved to map out a plan for her... maybe some sort of wrap around service and life skills sevice... I have been asking about this since day one!!!
    I asked her why she hadn't pushed before? She said she didn't realize how bad difficult child was and that we always seemed to hold it together so well, and that honestly we seemed to be doing a better job than some of the local support.
    She also said they tend to not aknowledge BiPolar (BP) here still... so we may have to push.
    I just want something, she has really poor social skills. We go over it all the time, yet as soon as we are out she is all over the place, talking to strangers, telling them every detail, climbing on their laps, chasing kids, "your my best friend" scaring them!!! She has no clue... poor thing.
     
  7. Janna

    Janna New Member

    Hey T,

    Just curious, you ever take the Pervasive Developmental Disorder (PDD) questionnaire for difficult child yet? I only ask because of the social skills stuff you're talking about. Alot of BiPolar (BP) stuff can look like Autism. You know, Dylan was Pervasive Developmental Disorder (PDD)-not otherwise specified before he was BiPolar (BP). Later on we found out he had both, but alot of the symptoms of BiPolar (BP) are like the symptoms of Pervasive Developmental Disorder (PDD) and vice versa (for example, both rage).

    Anyway, the test is at http://www.childbrain.com

    Don't recall the stuff with the Trileptal, Dylan took that one too, alone. I'll have to look it up (I got a new comp and all my stuff is in the old one).

    Hope tonight is peaceful. ((HUGS))

    Janna
     
  8. totoro

    totoro Mom? What's a GFG?

    Janna-
    Her neuro-evaluation said no Pervasive Developmental Disorder (PDD)-not otherwise specified, her 2 different therapists said possible Pervasive Developmental Disorder (PDD)-not otherwise specified, her psychiatrist said "No way" to the Pervasive Developmental Disorder (PDD)-not otherwise specified... the online tests have shown mild Pervasive Developmental Disorder (PDD)-not otherwise specified... psychiatrist feels her lack of social, maturity, sensitivity etc. are due to the Early Onset Bi-Polar (EOBP) and Sensory Integration Disorder (SID)- lack of early interventions and damage from her extreme rages and ultra rapid cycling. That Early Onset Bi-Polar (EOBP) can mimic Pervasive Developmental Disorder (PDD)-not otherwise specified, difficult child on somedays needs help getting dressed when she is cycling bad or when her Sensory Integration Disorder (SID) is bad, but other days she can do it all herslef... some days she can go out in public and she is alot better and appears more normal, other days she can't stop touching and talking, psychiatrist thinks the unpredictability, inconsistancy are what make it more of a BiPolar (BP) thing... who knows. Her Occupational Therapist (OT) thinks she does not have Pervasive Developmental Disorder (PDD)-not otherwise specified either. I know her diagnosis could be added to though in the future... I do feel pretty certain about the bipolar though and the Sensory Integration Disorder (SID), the other co-morbid stuff doesn't really matter, at this point. We just don't have anyone who could really tell if it is indeed co-morbid or just a part of the BiPolar (BP)...

    Thanks for asking.
     
  9. SRL

    SRL Active Member

    Occupational Therapist (OT) finally said today I think we need a sitdown with all involved to map out a plan for her... maybe some sort of wrap around service and life skills sevice... I have been asking about this since day one!!!
    I asked her why she hadn't pushed before? She said she didn't realize how bad difficult child was and that we always seemed to hold it together so well, and that honestly we seemed to be doing a better job than some of the local support.

    This would be a highly unusual role for an Occupational Therapist (OT).
     
  10. smallworld

    smallworld Moderator

    T, I'm glad things are a little better today. Because Trileptal is a mood stabilizer, it can take a few weeks to see any result (sorry!), and full effectiveness is generally evaluated after 6 to 8 weeks at a therapeutic dose.

    Keep us posted.
     
  11. totoro

    totoro Mom? What's a GFG?

    I know most Occupational Therapist (OT)'s would not be doing the suggestion of getting a meeting together... but she has kind of become a friend and realizes no one else is really looking out for us here and no one else has really come up with a game plan, despite us pushing and asking... She is just trying to help.
    THis goes with the small town life, eveyone kind of helps and is involved. She will help is ways most Occupational Therapist (OT)'s in a bigger place probably would not, kind of like my doctor calling me at home and offering her daughter to babysit...
    Our Occupational Therapist (OT) also wants us to go to the same school as her daughter...

    She is a very nice person... we will probably stay in touch even if our therapy ends.


    Is difficult child supposed to get a bit worse before she gets better??? She was elevated before, but now for the past 2 days... she can not sit still and does not want to be alone and can't play for 2 seconds alone, I could not take a shower yesterday and today she was in and out of the bathroom yelling nonstop. It is like she has kicked it up a notch even more... she woke up earlier also. she has had 2 doses so far... and her voice is so much louder!!! ugh... even easy child is sick of her.
     
  12. smallworld

    smallworld Moderator

    T, I've heard that every time you increase the dose of a mood stabilizer, behavior can worsen before it settles down. You also have to remember that you lowered the Risperdal, which could be contributing to the behavior you're describing (including increased anxiety and waking up earlier). As hard as it is to deal with difficult child, I personally think it's too soon to make a judgment about whether Trileptal is working or not. You gotta give it a chance to do its magic if it will. If you're concerned, of course, you should check in with your pediatrician or the psychiatrist.

    Hang in there . . .
     
  13. totoro

    totoro Mom? What's a GFG?

    I just talked to her pediatrician. and she said she has seen this before, the worse before better... I know I heve to give it some time I just don't want to go to long if she is having a bad reaction... It is hard to tell sometimes with her, she is so all over the board, she is up and down all day long, and know it is like some one slipped her some crack instead of the usual caffeine!!!
    We are going for a walk!!!

    Thanks smallworld... I figured you guy's are pretty good at spotting the wierd things... I feel good about trying this out for now.
     
  14. totoro

    totoro Mom? What's a GFG?

    She just drew all over her face and pulled out her 8th tooth!!!she is only 5!!! (she normally is not the type to draw on herself) So she has marker and blood all over her face!!!

    It is actually kind of funny... I sent a video to grandma...Ha Ha
     
  15. tiredmommy

    tiredmommy Site Moderator

    Totoro, I remember reading from another parent here that adverse reactions tend to happen at the "3" mark: three days, three weeks, three months. I don't know if that's valid or not, but I always thought it was interesting.
     
  16. dreamer

    dreamer New Member

    I have heard that, too.
     
  17. smallworld

    smallworld Moderator

    According to our 3 psychiatrists, adverse effects occurring at 3 weeks and 3 months can certainly be true for antidepressants, but I don't know about 3 days. I also don't know that it holds true for mood stabilizers.
     
  18. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I think it takes some time before you will see any good effect from the mood stabilizer and in fact, you can see a worsening of the symptoms first. As the medication gets into her system then you will see a calming down. It takes time. Mood stabilizers are not a quick fix.
     
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