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RAD or Seizure?

October 10, 2012 in Featured by Chrisa Hickey

The Girl had a follow up EEG earlier this week and her Neurologist called today with the results.  It seems  her tests shows she definitely has some abnormalities in her frontal lobes that indicate she is at risk for seizures.  In short, her diagnosis of frontal lobe seizure disorder, given after her hospital stay in May, stands.  I was hoping they’d say that the EEG was fine, and that the seizures were a temporary condition, but I guess  I will have to get used to epilepsy just being another in a series of challenges my daughter has to face.

So, as I  am prone to do, I have been Googling  frontal lobe seizure disorder for as much information as I can find so I can learn more about this condition and how to help my daughter.

And now I’m perplexed.  Here’s why.

My daughter has had a diagnosis of Inhibited Reactive Attachment Disorder since we adopted her at age four.  Symptoms of this disorder include:

  • Lack of response / apathy
  • Poor social skills
  • Poor sense of humor
  • Avoidance behavior
  • Contradictory responses
  • Poor language skills
  • Poor attention

The symptoms of frontal lobe seizure disorder include:

  • Lack of response
  • Poor sense of humor
  • Contradictory responses
  • Poor language processing / cognitive skills
  • Poor memory
  • Poor social skills (due to the above)
  • Facial grimacing at time of seizure, or other asymmetrical body posturing

So now I wonder.  Is what we were seeing as RAD all these years really the “side effects” of having seizures that weren’t big enough for anyone to notice? Because frontal lobe seizure disorder doesn’t appear as more common temporal lobe seizures do – full body or appendage jerking – did we just miss it until she had a really big one back in May?

She’s been on Keppra, a newer anti-seizure medication, since her hospitalization in May, and I’m happy to report that we have only seen one seizure since then.  And then I wonder, after the EEG results and my research, if it’s really just the one.  I’m trying to resist watching her like a hawk to see if I can tell.  She is 17  years old, after all, and what 17 year old wants their mother hovering over them every waking moment? I am going to fire off an email to her teachers, however, to see if they notice a difference in her attention and behavior in class than was seen last year, as she has at least two teachers this year the same as last year.  She will have to deal with just a little helicopter parenting.

When A Door Opens, Does a Window Slam Shut?

June 27, 2012 in Community Wisdom, Featured by Chrisa Hickey

Let me see, where did I leave off…oh yes. The Girl finished outpatient therapy, started meds, went through a month of forced primping, and was doing better with her moods, self-isolation, and distrust. It was bliss.

Then, on Mother’s Day, I asked her to help me move some things off our patio so we had room for a new freestanding fire pit.  She didn’t look thrilled about helping me, but agreed.  I wanted to move two awkward log holders that had had been on the patio for the winter, closer to the house, back to their summer spot behind the shed.  I suggested we each take a side and start walking it across the lawn, stopping as often as was needed to change our hold or just rest a minute.  We got about halfway across the yard when The Girl dropped her end and said she felt dizzy and nauseous.  After 10 minutes in the house she came out to try again, but as she lifted it her eyes rolled back in her head and we stumbled back towards the house.  It took another 20 minutes of me watching her to realize this was more than just dehydration, as she lost the ability to remember the alphabet, then couldn’t stay awake.

By the time I carried her in to the emergency room I was convinced it was a stroke.  Her face was locked in a grimace and she was in and out of consciousness.  By the evening she’d had blood tests, a CT, and MRI and a stroke, diabetes, and heart attack had all been ruled out.  She was admitted to the pediatric ICU ward where a doctor-in-training told us they had to treat it like and overdose for 12 hours, since she’s a teen and had been in an outpatient program less than 60 days before.  I told her we lock up all our medications and got that condescending smile most doctors don’t perfect until well into their forties.  ”No one locks up all their medications,” she said.  ”Have you ever treated a child who has a sibling with Schizophrenia?” I asked.  The doctor had to admit she hadn’t.  I gently told her that now she has and, trust me, we lock up everything.  I was badgered about not knowing any of The Girl’s family medical history, and had to explain that some kids in the real world are abandoned by their birth parents, who don’t leave medical records with the baby they dump in a homeless shelter. Seriously, I wonder why the class in bedside manner is an elective.  Obviously they aren’t required to take it for their degree.

She couldn't keep her eyes open.

Four days and an EEG later, we had a diagnosis.  Frontal Lobe, myotonic seizures.  Origin unknown, but apparently they could be genetic, even triggered by SSRIs, which The Girl had been taking for going on three months.  That’s my theory, anyway, after reading about it.  The neurologist and The Girl’s psychiatrist thought that was a long shot, but we decided to wean her off the SSRIs anyway, since four days after getting out of the hospital she had another seizure.  In the month since she’s been off them, she’s been seizure free.  But, full disclosure, she wasn’t at a therapeutic level of her anti-seizure meds then and she is now.

So now we play the waiting game.  Were the SSRIs really helping her mood? She was on a very low dose, I tell myself.  Maybe it’s an internal conversion, not the meds.  It’s summer now, a time of notorious self-isolation for The Girl, but we are sending her to visit family in California for most of July, where she’s unlikely to isolate herself from the beach, Sea World, and her six cousins.  Then it’s merely three weeks until school begins again in late August.  If the psychiatric meds were helping her mood, we probably won’t see any deterioration that is remarkable until the Fall.

Maybe I’m a fatalist, expecting the worst, always waiting for the other shoe to drop, and any other cliche about being a negative Nancy you can come up with.  Optimism doesn’t come too easily to me after life with my brood.  But I know enough about RAD to know that it’s not something you cure.  The window of recovery was open; now I feel it’s slammed shut by a seizure disorder.  I’m worried about trying a non-SSRI anti-depressant and what possible other genetic malady could be triggered.  We could go back to just CBT, but that alone didn’t do the trick for years before.  If you’ve got a RAD teen, I’d love to hear your thoughts.

Ultimatums and Body Snatchers

May 22, 2012 in Featured, Featured Member by Chrisa Hickey

the body snatchers
On March 31st I gave The Girl a proposal.  Well, not so much of a proposal as an ultimatum.  See, she’d spent most of March in an intensive outpatient program working on RAD and Depression symptoms, but when she came home to the normal daily routine, she wasn’t out of her rut.  The negative, self-deprecating behavior and talk continued.  So I came up with the proposal.  For 30 days she would agree to do three things, every day:

  • Take her meds every day
  • She would agree to get up before school every day and let me help her do all of the hygiene and grooming steps she thinks girls who feel pretty and good about themselves do
  • Do both things even though she things they are stupid and/or won’t make her feel better

She fought it. She sat on her bed and told me it wasn’t going to help, she was just going to be unhappy for the rest of her life, and she didn’t want my help and this was just some scheme to MAKE her take help from me.  I stood my ground. I told her I didn’t care if she didn’t want to do it.  I didn’t care if she was mad at me. She was going to do it for 30 days, like it or not.  I even pulled a play out of my mom’s old playbook and told her that in my house she’d do what I ask, period, or there would be consequences.  She turned up her nose, whined some more, and, the next morning, she got up and whined through my standing over her while she brushed her teeth and I combed and styled her hair.  She whined and complained every morning the first week of April.  It was torture. Her school bus comes at 6:30 in the morning, so to get through the complaining and get her ready for school meant we were up trying to be civil to each other at 5:30.  My husband Tom was placing bets on whether I’d be able to stick it out an entire month.

On April 10 I ran late, and dragged my butt out of bed at 6 AM.  It had been rough going so far and I was not looking forward to having to rush The Girl through everything I was sure she hadn’t done because I wasn’t breathing down her neck.  I was halfway down the hall when she stuck her head out of her room and said, “Mom, I’m not sure what to wear with this shirt. Can you help me decide?”  I stood paralyzed, still halfway down the hall, wondering if I was awake or still asleep and dreaming.  Tom nearly fell out of bed.

She asked for help.  Unprompted.  

The rest of April was practically a dream.  We played with different hairdos in the bathroom mirror before school each day. She asked about different eye shadows and squealed with delight at the realization that mascara comes in lots of fun colors.  She asked for a purse for her birthday.  More importantly, she tells me about her day, every day.  She’s eating. There’s no drama.  Last weekend I seriously considered checking her room for a pod.  The Girl turns 17 in May.  30 days ago, I was convinced we’d never be able to get through to her and make her realize that having a family is a good thing before she turned 18.  It’s only been a month, but I’m feeling a lot more hopeful that we’ve finally found the magic combination to help her learn to attach.  Wish us luck.

Four Years To Screw Her Up…

March 14, 2012 in Community Wisdom, Featured by Chrisa Hickey

She said I could post her picture.

I write a lot about my son Tim and his mental illness. 99.9% of my blog posts focus on him because one, he knows about  my blog and thinks it’s “cool,” two, he’s fine with me using his name and picture, and three, his condition, childhood onset schizophrenia, is pretty rare.  I don’t often write about my two other children, the oldest because, well, other than a raging case of sarcasm and a video game habit bordering on clinical addiction he’s fine, and the youngest because she would prefer I not use her name.  But the last several months we’ve been consumed by the mental health issues of The Girl (her pseudonym).

We adopted The Girl in 1999, a few days shy of her fourth birthday. She’d spent the first of those four years in the NICU, born nearly 16 weeks premature, positive for cocaine, weighing a half ounce over a single pound.  Her body still bears the scars of the tubes and wires that kept her alive those first few months as she detoxed alone in an isolette.  Once she was healthy enough to leave the confines of the hospital, she was handed to her birth mother, only to be found, alone, weeks later in a homeless shelter. Start the shuffle of foster care, at least eight, we were told, removed from one after being physically abused, removed from another after it was suspected she was sexually abused, the last full of high medical needs babies that she often sat alone in her room from 7 at night until 10 in the morning, no time to pay attention to her.

We were trained and certified as foster parents because we wanted to adopt a little girl. We had the boys, both rough and rambunctious at four and nine, but wanted them to have a little sister. That was our only requirement, that she be younger than Tim, so as not to disrupt the birth order.  We saw a picture of The Girl and were interested in getting to know her. Our caseworker was supportive but hesitant.  At three and a half she weighed 19 pounds. She didn’t walk until the age of two, might never be able to ride a bike, swim, or participate in any sports or outdoor activities, a result of Spastic Diplegia.  She rarely spoke, had an eating disorder, cried most of the time, and, we were told, might have a severe cognitive disability.  With that glowing report, we took her home, tossed her into the mix with the boys, and three months later she was jumping and playing in the lake next to our house, big grin on her face, big brothers in tow.  Fast forward nearly 13 years to a young woman that rides a bike, swims like a fish and is a mainstreamed high school sophomore.

What was on her chart but wasn’t really discussed turns out to be the issue we still struggle with. The Girl has a severe Reactive Attachment Disorder, or RAD.  She has the inhibited type – she shuns relationships with everyone, preferring instead to be left alone, relying on no one.  She craves negative attention, lies at the drop of a hat, and does whatever it takes to end conversations a swiftly as possible.  She’s petite – under five feet tall – and she uses that and her puppy dog eyes to get the only kind of attention she can handle, namely, adults and peers feeling sorry for the helpless persona she evokes.  Years of therapy have helped her mimic the behaviors normally associated with a healthy child and parent relationship, but she truly feels – and will tell us – she would prefer to do everything herself and answer to no one.  The past several months she’s been dabbling in behaviors she knows, through research on the internet and an endless stream of Lifetime made-for-TV movies, will prompt others to feel even more sorry for her.  Right before Christmas she stopped eating, at least in front of anyone, saying she wasn’t hungry, telling her therapist she was trying become anorexic.  The ruse went on for 60 days in which she saw an eating disorder specialist weekly and, even though we never saw her eat, food disappeared from the kitchen and she didn’t lose an ounce.  Last month we got a call from school to come get her. She decided one morning, before getting on the bus, to take a kitchen knife and slash long, shallow cuts into her forearm. When she got to school her friends saw the cuts and took her to the office. She admitted doing it, “just to see what it felt like,” and, after a call to her therapist, took her from school directly to the behavioral health hospital where she was checked in to a three-week, day hospital program, subjected to group therapy (which she abhorred), and started on depression medication.  At the end of the program her psychiatrist, a man we treasure as he is also Tim’s psychiatrist, told us that we may have to accept that this is just her personality, shaped in her formidable toddler years, a result of years of abuse, neglect, and institutionalism.  Children with RAD are often diagnosed, in adulthood, with Borderline Personality Disorder or Schizoid Personality Disorder, both of which have poor prognoses for creating or maintaining healthy relationships with others.

It’s hard to explain to someone what it’s like to parent a child with RAD.  It’s like living with an emotional terrorist.  And although I know that she has some affection for me and my husband, I also realize she would be just as content if we disappeared tomorrow.  My mother put it best one day, when The Girl had done something that would be seemingly bizarre to someone with healthy attachments to others. “Four years to screw her up, a lifetime to straighten her out.”  Sad but true.  Some days, I almost wish she had a mental illness like her brother.  At least I’d know there was a treatment that would allow her to recover. With RAD, who knows.

Be sure to check out the RADical Parenting Group we have on the site…it’s small for now, so be sure to invite people you think might benefit. It’s a private group, which means it’s not googleable but also means you need to request to join. Chrisa and Julia are moderators and can invite and approve members.

RAD Families Need Support: Ten Tips for Getting Support from Family and Friends

June 26, 2010 in Special Needs News by Julia Roberts

It takes a village to raise a child has become a popular rallying cry. The village is central to healing a child with Reactive Attachment Disorder (RAD). All too often our fellow villagers – families and friends — are critical of us, not supportive: “You’re being too strict. You just need to love your RADish more.”

What, then, can we tell those goodhearted people so they can support us? Here are ten tips for getting support from family and friends.

via RAD Families Need Support: Ten Tips for Getting Support from Family and Friends | Advanced Parenting.

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