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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Thursday, May 24, 2012

The Beast Within

This post isn't about Juvenile Arthritis or Uveitis. It's about SPD (Sensory Processing Disorder). I can't remember if I have mentioned it before now and honestly I am too tired to check. It seems I should know when she received this latest diagnosis, but I can't. If I have mentioned any of this before, just bear with me and or skip ahead.
A month, maybe two months ago I took Jenna to our regular pediatrician to talk to her about Jenna's emotional, irrational, really quite frightening outbursts. She has had them for as long as I can recall, but they were getting worse and more frequent. She was also leaving notes all over the house that said things like "I hate myself", "I hate my life", "I don't even know why I was born", "my life is an epic failure", just to name a few. She is way too young to be feeling this. So, I went into the appointment thinking Jenna is just under a lot of emotional stress on account of the JIA, Uveitis, meds, etc. Her ped started asking me a series of questions that made zero sense to me. Wait, I did blog about this. Now I remember. At any rate, apparently Jenna isn't depressed or stressed out. She has Sensory Processing Disorder. We were referred to a counselor to help Jenna identify and work through her emotions. Talk about epic failure. After two 1 hour sessions in which Jenna barely spoke, the counselor decided that Jenna is overindulged. Okay, BUH-BYE! We were also referred to an occupational therapist to get a full, official evaluation. I had done quite a bit of research before going into the eval. Some things made sense, others not so much. So I really thought the OT would tell us, "Nah, she's fine.". As usual, I could not have been more wrong if I had tried. Jenna exhibited deficits in areas that I never would have guessed. So, right now Jenna sees Miss Karen at OT every Thursday morning before school. Once school is out she will go every Tuesday and Thursday mornings.
This is all turning out to be such an incredibly painful learning process for all of us! As soon as I got her eval report, I told my husband that we needed to make some changes in how we deal with Jenna. NONE of this is her fault! All these things that we used to get so frustrated with her about, we used to punish her for. They aren't her fault. Now don't think I am going to start excusing bad behavior. No sir! But we will deal with and manage it differently. Things like brushing her hair and her teeth. Most kids don't necessarily LIKE doing it, but they do it. For us this is a tearful meltdown 2x daily, and it's still only done half way. Turns out this is actually PAINFUL for her. Any touching to her is painful. She told me today that she felt like she was being burned when Miss Karen touched her with a soft brush. I wanted to scream, "WHAT?!?!?!". But I held my tongue. Miss Karen explained that her brain is hardwired to send a signal that any touch is painful. To her any kind of touch is painful. Can you even imagine?? Too many sounds to her that are all at once and jumbled up make her feel "weird" and get her "engine running". She gets very keyed up and then her brain starts sending out mixed signals. She becomes overwhelmed from all of the sensory input. Jenna is very much a sensory avoider. This morning she had meltdown after meltdown with maniacal laughter in-between. It hit me once we were in the waiting room, when her eyes lit up at the sight of Miss Karen, was her behavior all morning a result of her excitement over going to OT?? Miss Karen said without a doubt. She was in a heightened state of arousal, her engine was all revved up and she simply cannot regulate that engine. I still don't fully understand that, yet it makes sense. And, it simply feels good knowing there WAS a reason behind this mornings behavior. She was also able to explain to me 1) Why Jenna has a meltdown about taking a shower and 2) Why Jenna wasn't able to explain to me herself why she hates taking showers. Miss Karen says that Jenna hates showers because of the water hitting her head and face as well as the sensation of the water running down her body. It is all TOO MUCH sensory input! IN the bath she is surrounded equally by water. Aaaaah, okay, gotcha. So why couldn't she just say so?? There is a term for it, but I can't remember it. Basically, Jenna knew why, but her brain can't send the words in sentence form to her mouth to tell me. As soon as Miss Karen said it, Jenna's eyes lit up like Christmas and she vigorously nodded "YES". After her session, Miss Karen explained a little more to me about what is going on with Jenna. I knew about the tactile stuff, but there is so much more. Even things as simple as, when you start falling to your left, your brain sends a signal "PULL RIGHT" so that you won't fall and get hurt. Jenna's body doesn't. When she falls left, her body says "PULL LEFT" and down she goes. When you go down a slide, your natural instinct is to put your hands down and push yourself up to stand, protecting your face and head. Jenna can't. Her body doesn't get that message from her brain. She will just continue forward and face plant. I get the feeling that we have only BEGUN to scratch the surface. I don't even think I am even coming close to expressing to you just how painful this is to see Jenna going through this. How much it is BREAKING MY HEART. I am MOMMY. It is MY job to fix her!!! I feel so angry and so sad all at once! When your child hurts, you want to make it better. I CAN'T FIX THIS. I can help her, but I can't fix her. Tears ARE streaming down her face, just as the song says.All I can do is TRY to fix her. I would like to ask God, "WHY HER?? Why?? Why is she being given SO much?!". But ultimately, it doesn't matter. She HAS been given this and we will deal with it.

"I Can Do All Things Through Christ Who Strengthens Me"
Philippians 4:13

Thursday, May 17, 2012

2012 Charlotte Arthritis Walk

Last weekend was the 2012 Charlotte Arthritis Walk. Instead of having our usual Beanz Buddiez team, we teamed up with three other JIA families from the area to form the Kids Get Arthritis Too Krew team! What a blast!  I don't have our team photo yet. When I do I will be sure to share it. So far the event has raised $59,585. Donations can be turned in until June 30th! Great job everyone!! Already looking forward to next year!

I need to lower my expectations...

Yesterday was Jenna's three month routine follow ups with the ophthalmologist and rheumatologist at Duke Children's Hospital in Durham NC. Almost four years in, and I still do not have a handle on this. With every appointment, I go in thinking that I know what's coming. Yesterday, I went in thinking that THIS is it! THIS is the appointment that changes our lives as we have come to know them! THIS is the appointment that we FINALLY get to start reducing her med doses. Ummmm, nope. 
I managed to snap some pics with my phone yesterday too (she never let's me!!) So I am going to share those while I tell of our day.

 This first pic is Jenna on the ride to Duke. It takes us about 2 hours and fifteen minutes. That used to be a torturous ride, but she has gotten used to it. This trip I let her bring the laptop to play on. :)
 Up first yesterday was ophthalmology. THIS is the appointment that always makes me the most nervous. Uveitis is often a silent disease. So it can be there, flaring, causing damage and we would never know. (I tried to get her to unfold her arms. NO doing!)
 First they check her vision. She has been complaining of difficulty seeing at distances. BOY I guess! She really had trouble with the charts.
 Then a fellow comes in to check her with the slit lamp to look for signs of the Uveitis. Jenna is such an old pro at this. They don't even need to tell her what to do anymore!
 These are the "really cool" sunglasses that they gave her. Glad you like them Toots. She needed to have her pupils dilated and lights can be painful afterwards. SO, Dr. Wallace came in, checked her over with the slit lamp and deemed her cell and flare free! WHOOT and HOLLA! She needs glasses but hey I'll take it!! She is really excited about getting glasses. She has no clue what a pain they are. Dr. W said he is fine to start reducing meds whenever the rheums are and he will see us in three months. BUH BYE!
 Off to Pediatric Rheumatology. She was very scared to stand this close to the railing for a pic, but she did it for me anyway. Thank you Bean. :) We got to see our favorite rheum, Dr. V!! YAY! We hardly ever get her. Okay, so here is where the unexpected comes in. The GREAT news is that her joints all look awesome! No signs of any active disease. No swelling, stiffness or heat anywhere. SO, my thought was that since she is doing so well AND since the Methotrexate has been making her so sick, let's get her off this crap. Ummmm, nope. WHAT?? WHY?! Three months ago at her appointment, she was having severe morning pain and stiffness. Even though she looked fine at the appointment, morning were still torture for her. Peg legged, scooting around on her butt, miserable. She was put on once daily Mobic. That has worked like magic. No more pain, no more stiffness, she has seemed to be doing better than she has in a very long time. Dr. V is concerned that if we reduce her meds now, after only three months on the Mobic, that it will bring all that pain and stiffness back. She feels that Jenna's body needs more time, that in six months if she is still doing this well we can start stretching the space between Humira injections. Okay, I can take that. Not what I was hoping for, not what I was expecting, but we can take it. We are going to TRY to change her DMARD from Methotrexate to Avara. The MTX is just making her so sick. Partially because, well, it's toxic chemotherapy. Partially, we think, because she is anticipating being sick and the anxiety of it coming is only exacerbating the effect. Here is the problem, Avara is a pill that cannot be crushed or cut up in anyway. It must be swallowed whole. Jenna can't even swallow one mini M&M or a tic tac. :( My hope is that the simple fact that if she can swallow this tiny little pill each day that she gets to skip one shot a week and not get sick is enough motivation for her to get that danged thing down her throat hole! I guess we will find out tomorrow morning.
Jenna shared a few things at yesterday's appointment. Jenna sharing thoughts and feelings is pretty rare! When Dr. V asked about Jenna's activity level I was about to tell Dr. V that it's been great! But out of the corner of my eye I saw Jenna shaking her head "No". I asked her, "You DON'T think you have been active?". Again she shook her head "No". I said, "Really? You seem to Daddy and I to be more active." Again, the shake "No". It hit me then. I said, "Do you mean you aren't as active as your friends?" This time I got a "yes" shake. Ooooooooh, well, :(. She also, for some reason, asked me about the Humira Pen yesterday. I had no clue that Jenna even knew about the pens! I said, "Why do you want to know about them?" She said, "Well, when can I get them instead of the needles? That way I can just, *insert sound effect*, get it done." After explaining how the Pen works, getting the med in super quick, which makes it hurt worse, she was all set with the pen. :p I told her that if she changes her mind to let me know and we can get her the pen. After that discussion, she asked me if Jordan uses the Pen for her injections. Jenna looks up to Jordan SO very much!!! One day, they WILL meet! I told her. "No, Jordan doesn't get injections anymore. She has to get infusions for her meds. " Jenna then asked me to explain infusions.I told her that Jordan has to go to the hospital to be hooked up to an IV for hours to get her meds through the IV. Jenna's eyes bugged out and she said, "HOURS?!" I said, "Yes, it takes hours. How many depends on the med. But still, hours." To my surprise, Jenna said, "She's lucky." I'm sorry, SAY WHA?! I asked her, "You would RATHER have infusions??" She replied with a very somber, "Yes." Well that about knocked me off my chair.

And then there was this. Jenna always draws on the table paper at any appointment. But this was new. She has never been so expressive about her arthritis.