Sunday, April 14, 2013

T.W.A.A.R.P.

Mom's Thoughts:

BTW, Elizabeth and a friend have started a new blog and support group in our area.  Check them both out:


TWAARP Website

TWAARP Blog

 
 Also, the International OCD Foundation is holding its annual conference in Atlanta this summer.  It looks like it's going to be great!  Check that info out here:






A New Doctor, A New Plan

Mom's Thoughts:

It's been a while since my last post.  A lot of things have been happening, and time slips away quickly. 

After our last visit to Elizabeth's pediatrician Dr. G., I broke down and scheduled her an appointment with a child psychiatrist.  We do have an appointment coming up next week with a psychiatrist that is on our insurance plan, but we've already waited 4 months for that appointment.  I just couldn't wait any longer.  We found Dr. S. in a psychology group that had been recommended along with several others by her therapist.  Of course, none of the psychiatrists we have been able to get appointments with take insurance, but I decided to bite the bullet and pay out of pocket.  And it ain't cheap, I'll tell you.  Makes me really think about all those people out there who don't have the insurance or the money to pay for their own care... but that's a topic for another day.

Dr. S took control of things right away.  She's an odd sort, and Elizabeth was a little put off at first.  But she seems to really know what she's doing, so I'm on her team.  She immediately began taking her off of Paxil (Elizabeth was taking the max dose of 60mg.)  She said that using high doses of SSRI anti-depressants to treat anxiety can cause a hyper-manic response - inattention & inability to focus, racing thoughts, inability to sleep, very strange "panic attacks" that lasted sometimes several hours, hyperactivity.  She also says that Paxil is one of the worst SSRI for treating OCD.  After several weeks, she is down to just 20mg of Paxil and is doing much better.  She is still having some of these residual side effects, but much reduced in intensity and frequency. 

She is now cross-transitioning her onto Luvox, which I've heard from several therapists is much better for OCD.  The jury is still out for that medication, since she has just started on a very low dose and the doctor says it although it will help with the anxiety and depression soon, it will take 12-14 weeks to see any improvement with the OCD. 

She is still taking a couple of other medications to help with the "breakthrough anxiety" and panic attacks, but Dr. S says we should be able to reduce and eliminate those once she is stabilized.  

Elizabeth is back in school full time now after a few weeks of coming home in the middle of the day and even not being able to go at all.  Her therapist says she must continue to go to school no matter how hard it is - and not all me.  It is part of her exposure therapy, and continuing to skip school (that is, giving into anxiety) can create much bigger problems.  I'm so glad she gave me that permission - it's hard to know how to help your child when they are suffering.  Do you bring them home to momma, or make them tough it out?  Will you make things worse or better?  My instinct was to make her go, but that is easier said than done.  And with her therapist giving the order, Elizabeth was more open to following it.  I just had to be "the enforcer." 

She is a bit behind in school, but we've been working on an official 504 Plan with the school counselor to give her the accommodations she needs at school - extra time on assignments and tests, the ability to leave class to see the counselor whenever needed, and even the ability to do classwork at home.   This is a great plan (check the website link below for info on this) and is helping her stay on track with her grades.  The teachers have essentially been giving her those accommodations anyway, but the 504 plan makes it "official" and is easier than going to each teacher individually to put out various academic fires.  I'm very grateful to her school for being so accommodating and to her teachers and counselor for being so kind.  I am so moved when I think of how amazing they have all been.   Traditional thinking has told us once kids get to high school, they're "on their own" and are going to have to "sink or swim."  My experience with her high school couldn't be further from the truth.  I feel blessed to have such a great school to support my daughter. 

I'm not a medication person (I don't even take vitamins,) but I can see that medication, along with Cognitive Behavior Therapy, is necessary for Elizabeth.  I am just glad we seem to be on the right track and can hopefully get things under control over the summer. 

Info on the 504 Plan:

http://www.greatschools.org/special-education/legal-rights/868-section-504.gs



Wednesday, March 6, 2013

Ninja Service Cat

Mom's Thoughts:

Well, we took the leap and got a cat.  Elizabeth thought it would help her feel less lonely and anxious, and her Dad and I, being desperate to help her, caved in.  We all went to the animal shelter and peered through the glass at the various kitties that had landed there in the last couple of weeks.  They were all precious and wonderful.  We held them, played with them, read their "vitals," and finally settled on a neutered male, Shadow.  He was the perfect blend of playful yet mellow, and friendly to all of us.  He is a "blue," although he just looks gray to me.  I'm obviously very ignorant of feline particulars.

I was very hesitant to get a cat just yet.  I thought it would be good motivation to keep Elizabeth on track with her therapy, so I didn't want to jump the gun and lose a great "carrot."  But after a few bad days, I was desperate.  Elizabeth had not been able to go to school because her anxiety was so high.  She was not completing homework and was falling behind.  She's in a lot of honors classes, and a few days of not being able to do anything, well, it's not ideal.  Although I have to say, her teachers and the school have been great - very supportive.  Actually, I feel the need to digress and tell a quick story about that...

One of Elizabeth's teachers is an intimidating woman from Spain - tall, demanding, and... well, you get the picture.  Everyone is petrified of her, but she seems to love Elizabeth.  Probably because she is a very dedicated student and works hard.  Lots of kids do, but something about her stands out to this teacher.  Anyway, when she learned of the severity of Elizabeth's panic attacks that made her leave class (and eventually school,) she insisted on coming to the counselor's office to see her.  She gave her a bunch of hugs and brought her chocolate from a bin in her class, knowing that was her favorite.  "Eat this chocolate," she insisted, thrusting several bars of Hershey's minis into her hands.  She unwrapped a piece of her own, and then looked at Elizabeth expectantly as she ate it.  Elizabeth slowly unwrapped a piece and ate it as well.  What else could she do?  I cried when I heard that story, and my husband cried when I told it to him.  There is nothing like someone being immensely kind to your child in a time of need to make a grown man cry.  Make it a tall, intimidating, demanding person, and well... it is an even more compelling reason to cry.  Often the toughest shell hides the softest interior.

After a teary hour in the counselor's office (teary for me,) I felt compelled to do something drastic, and if that meant bringing in a cat, so be it.  Honestly, I'd bring in an entire zoo if that would make things better for her.  (OK, I'm taking that back already!)  However, after Shadow arrived at our home, I was pleasantly surprised at how much he helped Elizabeth.  He kept her company, and her anxiety levels dropped.  She was able to return to school the following week.  We call him her Ninja Service Cat.  King Kong is definitely afraid of cats, we've decided!

The days haven't been easy, and she has not been panic or OCD free by any means.  We have had two very rough days yesterday and today, for example.  I am still desperate to get her the proper help.  But there is a glimmer of hope.  It has been a very slippery slope the last few months, but I feel like this is the first we've gone back up the slide a bit.  I'm still holding my breath a bit each morning as she goes out to the bus, but I have much more hope that she'll make it through the school day again. 

By the way, we have finally found a therapist that has begun CBT and understands OCD.  Finally!  She is wonderful, and I have great confidence in her.  But I admit it, I'm extremely impatient.  Elizabeth has only had one session with her (I went to the first one alone where she got the history, etc.) but I already have a long list of "to do's" for her, and Elizabeth's first "homework assignment" didn't hit any of them!  It took every ounce of maturity and self-control (I fancy myself having some of both of those) to not march back into the office and demand a re-do when I heard what Elizabeth was going to work on this week.  UGH!!  She's not going to school, and she's working on not moving her rubber duck in the shower??  You've got to be kidding me!! 

Frustrating, definitely.  But I know the wisdom of it, I really do.  She has just met her once and has to start slow, getting to know her.  Part of the difficulty Elizabeth is having is from moving too fast, doing too much at one time, underestimating the crippling difficulty of seemingly easy tasks.  But meanwhile, we are dealing with major panic attacks almost every day and paralyzing anxiety.  

I took her to see Dr. G yesterday and he was able to see her in the middle of one of her panic attacks.  It was eye-opening to him, and I got a chance to say, "See?  See what I mean?  I'm not one of those overreacting mommies!"  He is so good, but he is not a specialist.  He gave her a new prescription to help get it under control so she could focus on her CBT, but reiterated to me that she needs to see a psychiatrist.  I've not been able to find one in my area that specialized in children and also takes our insurance, except the one we've had an appointment with for 3 months, and we still have another 1 1/2 months left till that appointment.   I decided today we have to go out of network and try to get her in sooner.  I'm working on that... I'll report back as soon as I have an answer. 

Pray for us.  We need it!


Shadow!!

Elizabeth's Thoughts:

Finally!! A friend! My cat, Shadow joined our family a few weeks ago. He is my inspiration! Everyday before I leave to go to school my mom says "Remember me and Ninja Cat are in your bag with you all day! We will always love you and we've got your back!" It actually helps. Really? It blows my mind too.

Although, my kitty cat has helped me get through hard nights, day problems have increased. School has been terrible. There's still no problems with grades, teachers or friends, but I have trouble paying attention. I suddenly want to cry. It makes zero sense. I go to the counselor and rock back and forth for a class period and then go back to a normal day. It's embarrassing and I feel so behind! I am so frustrated!!

Even at home, (other than my AMAZING ninja cat) I've been shaky. I can't explain my weird actions to my friends and I feel like I need their support, but the select few of them I trusted to tell didn't take it seriously when I try to explain these problems. to a I'll be having a great day, laughing and fine and it happens again. Darkness. Sadness. I suddenly change and they think it's a joke. I'll feel lost, feeling as if the sadness has completely engulfed me. I ripped my feet with nail clippers the other day. That was rock bottom. My entire foot now openly shows the corruption building inside or me. The doctor says this is a type of cutting, but even the thought of cutting has always grossed me out! Why is this? I know OCD is making me doubt why clipping skin with nail clippers is considered self-harm, but I continue to question it's truth. I hope now with my knowledge, drive to beat King Kong and my amazing ninja cat I can climb out of the ditch I am stuck in now.

But you know, I truly think God gave me OCD because he knows I have the strength to fight it. I'd rather carry this burden than someone who is at a point of not being able to fight anymore. Can't get a rainbow without a storm. :)