Monday, May 25, 2009

Since no one reads on a weekend anyway...

I took Genea to the psychiatrist on Thursday. He has known her since she was with the first family, so about 3 years. Whenever I get in the office with him and Genea I seem to lose my ability to communicate, I forget everything I wanted to mention, and what I do manage to eek out makes no sense. Why is that? Got no idea. I have no objectivity, I am Genea's Mom. So this time I made a list. I went around and collected a list of symptoms for childhood bipolar disorder and for reactive attachment disorder. Then I highlighted everything that fit and emailed it out a few days ahead of time. I also included a list of things I see as on going problems that do not seem to fit anything. PLEASE keep in mind that I do nOT see Genea in only this negative light. As her Dr will say himself, (the only male doctor I have ever met who has any sense), he is not there to hear about her accomplishments in table setting or that she likes cheese. He needs to hear what the problems are to put the pieces together to make an accurate assessment.

I am shrinking my font because this is so very long!
May 18, 2009
Here is a list of symptoms from a diagnostic list of child and adolescent bipolar disorder on everything in bold is something I see in Genea.
An expansive or irritable mood
Extreme sadness, unwillingness to play
Rapidly changing moods lasting a few hours to a few days
Explosive, lengthy and often destructive rages
Separation anxiety
Defiance of authority
Hyperactivity, agitation and distractibility
Sleeping little or alternatively sleeping too much
Bed wetting and night terrors
Strong and frequent cravings often for carbohydrates
and sweets
Excessive involvement in activities and
Impaired judgement, impulsivity, racing thoughts and pressure to keep talking
Dare-devil behaviors
Inappropriate sexual behavior
Delusions , hallucinations
Grandiose belief in abilities that defy logic
Genea shows all of the above except for the last 4. Night terrors are infrequent and defiance is fairly minor although is elevated. Rages are explosive, over minor snags and not usually destructive.

Attachment Disorder diagnostic criteria from
Superficially engaging and charming
Lack of eye contact on parents terms
Indiscriminately affectionate with strangers
Resistant to affection on parents terms
Destructive to self, others and things, accident prone
Cruelty to animals
Lying about the obvious
No impulse controls, hyperactive
Learning lags
Lack of cause and effect thinking
Lack of conscience
Abnormal eating patterns
Poor peer relations

Preoccupation with fire, blood, gore
Persistent nonsense questions and chatter
Inappropriately demanding or clingy
Abnormal speech pattern
Triangulation of adults
False allegations of abuse
Presumptive entitlement issues
Parents appear hostile, angry

Here are some of our daily issues:
Frequent urinating on self, in cycles
Binges on liquids, deliberately setting self into coughing episodes
Tactile defensiveness yet craves touch and pressure
Stiff, always stiff. Toe walks, muscles are tense even when sleeping.
Falls, trips, knocks things over many times an hour- is able to stop
Able to spontaneously vomit
Hurts sister without cause, expressionless both at the time and when caught
Unable to occupy herself, polar opposite of previous behavior
Able to maintain herself well in school. Report cards are really good. Teacher loves her (not just saying that, I think she really does). They note a delay in physical abilities, both fine and gross motor.
She may need glasses, going for appointment.
Her short term memory is terrible. It feels to me like she sees her days as one mountain after another and once she has pushed through her day that’s it, like it never happened. For example, she rarely remembers what she had for lunch. Even though we ask daily, she is only just recently able to pluck out events to tell about. Then it is usually something that caused her stress, such as a child being absent that day. Or, the day there was an unexpected substitute teacher wow, she just blew up when she got home.

Previous diagnosis’
Failure to Thrive ages 28 months to 4 years old. No growth or weight gain
Autism- Moderate, probably inaccurate, age 3
Addisons syndrome (similar to) age 3 to 5
Anaclymic Depression

She will go to time out and will do as told for consequences. Since I have started her doing jumping jacks when she takes on her vacant expression to “get her brain unstuck” her brain is much less stuck. Also has stopped coughing on liquids since I gave her a spoon to get her liquids with. I did it for one day and she quit choking entirely when she got her cup back. Have her in diaper at school after 4th wetting incident in about 3 weeks time. She loves it. I have her paying me back for the extra expense of the diapers by doing a ‘nasty’ chore every time she comes home with a wet diaper. So far, only one day with a dry diaper. But, a lot of nasty chores are getting done.

Spontaneous tantrums have reduced slightly. Able to accept ‘no’ about 20% improvement. Does not go to full blown screaming crying fit immediately as first reaction to every thing she doesn’t like. However, will go to it as second reaction when she does not get what she wants. VERY unpleasant past 2 weeks or so. Have stepped up strong sitting and tapping, using more restrictive therapeutic parenting (Nancy Thomas).
I see cycles with Genea, usually it is 2-3 weeks of sort of stable behavior then 1-2 weeks of explosive wild behavior. She reports feeling nervous, or worried often.

So that is what I sent them. After much discussion, we increased her medication in order to try to stabilize her moods more. Hopefully if that works, we will be able to effectively address some of the behavioral manifestations of her neurological imbalances. It has been 2 years. Originally I heard a lot of "its going to take time" and "you are trying to rush it" but I don't think that can be said anymore.


  1. What meds did they put her on? They put Felpsy on Zoloft for anxiety, but it had the side effect of agitation so we took him off. I was at the point I'd have tried anything, someone told me Omega 3 oils had a wonderful mood stabilizing effect. We tried it and it works, Felpsy calls them his happy pills because he doesn't feel "tight" anymore. Although I am perfectly aware it may be a placebo effect, I'm ok with that.

    I also forget the laundry list of things as far as RAD that apply to the twins, I forget about the prenatal exposure to God knows what probably affected them. Of course I'm working with 23 year old know it alls who have a degree in something that I don't, so help is slow coming. Frustrating!
    Good luck, hoping that new meds help. Otherwise break out the Flinstones:)

  2. HI Essie - I will read this post because I am interested to hear what is going on with Genea. But for now, I just wanted to let you know I replied to your comment about the benches. Wasn't sure if you would check back. :)

  3. Can you please explain Addison's?
    Sent you an email too.

  4. Funny thing there, my placebo plan is to soak a piece of bread with flax seed oil for the omega 3's.
    As much as I don't mind putting everything else out there, I would prefer to keep Geneas med info private. Yeah, I know.
    Addisons is similar to what she had. Her body burned out its own ability to produce stress hormone by the time she was about 3. She could have seizures, go unconscious, into a coma etc. She was med dependant, and under any stressor we had to do an IM injection- she did not love that. She had a medic alert bracelet. We carried her supplies everywhere, it was very serious.

  5. Essie,

    One of mine, who shares similar experiences with your Genea, sometimes gets a stuck brain and your comment about jumping jacks to "unstick" her brain was encouraging. I too have to use a physical activity for the same reason and I am always amazed at how as soon as he starts bouncing he can get back on track with what he needs to do.


  6. What I wonder is how the heck you actually MAKE a child do jumping jacks, etc. I suppose I can visualize defiant refusal so well because I'd refuse to do it myself... but I can't really get kids to do even their nice, sweet chores (fluff your pillows and pull the quilt over the bed), let alone nasty ones. I think I need real help in this department. Being a self-motivated person myself, I've never understood how to make someone do something on a regular basis. Only Nastya has that quality. I can't even get Zhenya to do the nicest little sweep-the-stairs job. Not even if I deny privileges, not even if I give good rewards. Not even if I give a nice talk about "working together" and "being part of one family". So - chores for punishment? I can't imagine it!

  7. The jumping jacks and jumps on mini trampoline worked wonders to unstick Corazon's brain. She was 4 1/2 when we started using them. I sometimes added running in place and hopping on one foot/two feet. I totally second the omega 3 oils. After testing out dosages I now have Tortuga on mega doses of omega 3 (like 8-10x the recommended dosage) and nothing has worked better to address his moods aggression,( irritability, and even mental focus.)

  8. Great post. You were so prepared for that appointment. I am very impressed. (I know you had/have strong motivation! Seriously, is there anything more motivating than contemplating more years than absolutely necessary with a RADish?!)

    With our RADish, our psychologist told us from the outset to expect that we must think in terms of taking "at least a multi-year perspective on his healing." I can't tell you how many times (at least daily) those words have come back to me. We are lucky now that we can look back over long-ish timelines (e.g., 6-month chunks of time) and see actual progress. The progress unfolds in the form of hte much shorter cycles that you describe with Genea, so something like 2 or 3 weeks of *relatively* smooth sailing followed by 1 to 2 weeks of dysregulation, regression, and so forth. During the regressing periods, we often feel like we are seeing a new RAD behaviour pop up to fill in for one that our boy may be starting to see heal, so it can feel like more is always being thrown at us. I have found that it's overly easy for me to get hit by those dysregulated intervals and become despondent about our RADish having no hope of ever healing. At those times, I try to force myself to look back over 2 or 3 years made up of 6 month intervals. I pull out the diagnostic/symptom list that you also pulled out. When I do this, I am able to see very clear progress. We still have a long way to go, don't get me wrong, but I am almost always restored by the definite signs of progress I can see. Additionally, somehow this examination of our son's progression always brings me back to how much he's gone through and lived through and endured. He still has been with us for less than half his life; i.e., he lived longer through his hell(s) than he has lived with us in comparative stability. And that's before you deduct some portion of his early time with us to cover off the possibility (definiteness?) that he perceived those first few months (years?) as yet another trauma or fracture or whatever. So I always come back to this idea that he really has been through a lot, and I sort of think it's understandable that he's got the issues he has and sort of miraculous that he didn't check out altogether because, really, I'm not sure I could have maintained any sanity if I'd lived through what he went through. So I guess what I'm saying is that I end up marvelling at his resilience compared to what I think I would have been capable of, and my motivation is generally renewed. I probably sound better at this than I am. I actually think I stink at a lot of it, and I live in awe of you and a lot of the other blogging moms. I really just wanted to let you know that you are doing an amazing job, and I hope you get more answers from your doctor over the coming months, and that I wonder whether you can see any improvements in Genea -- no matter how small -- when you look back over a longer timeframe.


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