Sunday, August 12, 2018

Runaway Train: Emotionally Raw

Emotional Mess:

I like to think that sometimes it’s ok to have a pity party. To have it out and then take those deep breathes and dust yourself off. Sometimes the pity party lasts an hour, other times a week.  Sometime things suck for a while and you appear to handle it with grace and suddenly, it all comes crashing down at the most inopportune time. I mean, hey, it is totally normal to start crying in the workout section in the middle of Kohls (I’m thinking it would have gone better in the purse section, but oh well).

I am guessing you have by now figured out that I had a pity party in the middle of store and at home and in the car that lasted intermittently for a few days.  It was all an accumulation of things and then the fact that Ellie got 4 diagnoses and 4 new medications all within the span of the week.  I don’t know why the diagnoses bother me.  It is just a label for all the crap that she has been going through for a while now.  Anyway . . . 



It isn’t all medical.  Sometimes raising a developmentally delayed child is rough.  Sometimes raising a child who is delayed with a psychiatric disorder is rough. Sometimes, it is really hard to be around typical kids because then I know what “it could be like”.  

Ellie is almost 9 years-old.  Her speech is lagging way behind - at that of a 22 month-old according to her most recent speech evaluation. She has come a long way since getting her communication device (more on that in a future post), but at times, I am sad.  I want to have a conversation with her.  Hell, I can have conversations with 2 year-olds.  I want to ask Ellie what she did at school today with her not just sign “school” - essentially repeating the last word I say.  Yes, she is really starting to understand things and I am seeing a cognitive explosion, but I want to be able to do things like have tea parties at restaurants.  To have a conversation.  To have her fully potty trained (she is almost there!) and not pooping in her pull up.  I want to snuggle up on the couch and watch an actual movie with her.  Seriously, I still haven’t seen Brave or Moana or Trolls.

On top of that, Ellie’s behaviors are out of control.  For months, we haven’t found anything that worked.  The morning of her neuropsych appt was bad.  I internally screamed “I CAN’T do this anymore!  I am done!”  This of course led to more tears.




The Unquiet Mind:

Ellie has Down syndrome and that is nothing exciting.  She has multiple medical issues.  Also nothing of great excitement.  What is something.  What makes it most difficult to get by day by day is her behavior, her mood swings, her defiance.  

I always knew that she’d end up with an Axis 1 psychiatric disorder given our family history.  I just thought it was years down the road. She definitely has ADHD.  Her case is text book. She’s had it since she was 2 years-old.  We found the miracle drug of Adderall when she was 4.5 years-old.  A light switch went off.  All good things come to an end though.  She was maxed out of Adderall.  Thus began the search for new meds - for months!  We are still searching.  Medications she used to be on either didn’t work (i.e. after 2 months of stopping Risperdal and then restarting it - we saw no change in hyperactivity anymore) or they caused adverse effects (tics, uncontrolled body movements, mood swings, aggression).

I mean it is totally normal to have a Kleenex box flying by your head while in an exam room waiting for the psychiatrist because I wouldn’t give her a tongue blade.

This summer I thought we would get her regulated.  I had discussed with neuro that I was seeing signs of bipolar in addition to her ADHD and thus transferred her care to a neuropsychiatrist.  We’ve been seeing her every 6 weeks and we discovered a few things. 


The Rapid Cycler:

Ellie was on short-acting guanfacine (Tenex) for 3 years.  It is a blood pressure medication that works in the brain.  It worked great for hyperactivity.  WORKED as in past tense being the operative word.  This time, it caused massive mood swings.  Changing from minutes to minutes. Going from extremely hyperactive and singing to yelling, agitation, and hitting herself because I didn’t make her sandwich fast enough.  This is not a normal reaction.  After 3 days, I stopped it.

The Violent Child:

Ellie takes 0.2 mcg of clonidine at night for sleep.  This is another blood pressure medicine that works in the brain. It is also used for hyperactivity.  Nephrology and Neuropsych wanted to do a low dose (0.05 mcg) of clonidine in the morning for both her high BP and ADHD.  It was disastrous.  For the first 3 hours, she was very aggressive - biting, kicking, shoving my face hard, hitting herself.  Then at the peak, she would be a calm angel.  So yes, the clonidine was working once it reached peak, but we couldn’t release her in the world with her violent behaviors.

The Moody Child:
We started Ellie on Strattera for ADHD in May.  We noticed it helped with her focus.  We bumped up the dose in June, less focus but still better than without it.  I finally realized that her moodiness was caused by Strattera.  Interesting thing about this medication.  It works on norepinephrine.  Most antidepressants work with serotonin or norepinephrine - both neurotransmitters in the brain.  In people with bipolar or other mood disorders, a medication like Strattera or Zoloft without a mood stabilizer trigger the mood swings. Finally, Ellie now has the diagnoses of Neuro-developmental disorder and mood disorder with general medical condition (basically a mood disorder, but not a specified on like bipolar or borderline, etc).  We have started her on Trileptal which an anti-seizure medication that also doubles as a mood stabilizer.  Fingers crossed that this medication helps her without many adverse effects.

Coffee Therapy: Happiness in a cup


Superwoman Is A Fictional Character:

There are days where I say “I am done.  I can’t do this anymore.” and those days have lately seems to occur more frequently.  The thing is, we all know that I am not done.  It is what it is.  Ellie and I will face this together.  I am her mother.  Her caregiver and I will never give up on my child.  Ellie is my everything and I would do anything for her.  So no, I am not done and I will move forward as I always have for the past ~9 years.  This does not make me make me superwoman.  This makes me a mother who loves her child and you would be doing the same too.




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7 comments:

  1. Oh my. I can't even imagine what you're going through, how you deal with it all. Such a raw, honest glimpse into your lives. Thank you for sharing this. You will be in my thoughts and prayers.

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    1. Cindy, thank you! I usually don't get all stressed out and worked up over it, but I guess the several months of this just caught up to me suddenly. I appreciate the prayers

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  2. Yes, we would, but you ARE and it is incredibly hard and draining and if all your pity party entails is some crying in department stores then you are a much bigger bad ass than most. But ai know it doesn't feel like it. Sending love, Anna.

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    1. Thank you, Leah! Not sure why I lost it in the workout section. I love new workout clothes! Maybe if it happened in the kid section. . . :-P

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  3. Love you, Anna. Sending you and Ellie hugs.

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  4. Sending hugs and good thoughts to you and Ellie. Thanks for sharing in such an honest and way. Your love for Ellie and your willingness to do everything you can to help her live as her best self is so clear from your words. Hope you can take some time to care for yourself as well.

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I love your comments and I read each and every single one of them.

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