Monday, November 25, 2013

An interesting encounter at Burger King and a toxic synovitis update

Many of you have been so kind as to inquire how Ellie Bear's hip is doing after her little bout of toxic synovitis.

I think it is safe to say she is doing much much better.  In fact, she is back to her usual rambunctious self.  You are viewing the above picture correctly.  That is Ellie climbing on top of some trashcans at Burger King.

Austin got hit with 34 degree weather.  And rain.  Both a record I am certain.  I had to find a long-sleeved shirt and a coat and a hat and socks. . . in Austin.  Anyway, here is some complex math:

cold weather + wild child = indoor playscape + coffee = Burger King

Why is she on top of the trashcans and why on earth am I capturing this gross moment on the cellphone camera?  To be quite honest, I have no idea.  Most of  Ellie's antics cannot be explained and I like to document her spunkiness.  Besides, you didn't really think I would bring my nice SLR camera to Burger King, did you?  So hence the grainy cell phone pic.  In fact, I should warn you that this post contains nothing but cell phone pics.

What I do not understand is why she is on the trashcan.  I mean, seriously, the whole reason we are at Burger King is so that she can play on their ridiculously huge playscape that is constructed of two stories of tunnel slides and climbing platforms.  It is a motor-sensory-seeker's dream!  (and a mother's nightmare.  Ever try to track down a kid in one of those contraptions?! Especially when you are claustrophobic and afraid of heights!)

oh my gosh, she looks so sweet and innocent.
I bet she had you all fooled!

Somewhat unrelated, we had a rather strange experience.  A good strange.  Ellie accosted this 11 or 12 year-old boy wearing an awesome Star Wars hoodie.  I think she liked the hoodie because it looked like it had buttons on it.  Anyway, she started pushing the "buttons" on his hoodie and called him "dada".  It was really quite embarrassing, well for me it was.  I think Bear was oblivious to the awkwardness.  The boy took it in stride like these things happen all the time.  These things do happen.  All the time.  Ellie calling males over the age of 10 "dada" that is.

Anyway, this nice young man-child and his friend tell me that she is so cute and ask her age.  As usual, I get the odd looks of disbelief when I say that she is 4 years-old. They then proceed to ask me her birthday as though to confirm my answer. I suppose it would have been inappropriate to tell them I distinctly remember when and where I squeezed her out of my . . . er never mind.  Chick-A-Boom is a pint-sized, nonverbal 4 year-old so I get the age confusion.  The boy considers my answer and asks me "Does she have autism or Down syndrome?"  Huh, a kid using people first language and he said Down, not Downs.  Apparently, his sister has autism and she didn't start to talk until she was 4 years-old and he was wondering if Ellie was like his sister.  I explain that she has Down syndrome and is still learning how to talk because she has difficulty using the muscles of her mouth, but that she understands everything. He and his friend get very excited and start to play with Ellie.  They ask her questions and show her the Star Wars hoodie.  It was beautiful.  Two teenage boys playing with a 4 year-old girl in Burger King. It was really quite sweet and I thought that perhaps our youth is more in tune with and accepting of people with special needs than I give them credit for.

Now, I just need to teach Ellie what is appropriate to climb and what is not.  We have a ways to go.

Taken just before she decided to strip naked.  On the island.
Yes, my kitchen really is that messy and yes, that is a romance novel you spy to the right.


Sunday, November 17, 2013

The School Note

Over the summer, when Ellie attended her private preschool, we would receive weekly notes that discussed what they were learning in class--"we are focusing on trains this week and read "The Little Engine That Could", the sensory table was filled with beans, and Ellie mastered connecting 4 trains together and put them on a track"--or something along those lines.

Bear's school pic

During the school year, Ellie goes to the public elementary school where she is in the PPCD class [preschool preparedness for children with disabilities].  She rides the bus to and from school and with her being nonverbal, I pretty much rely on the teacher notes to give me a clear idea on what Ellie's day is like. The notes are sent home in her backpack typically 2-3 times a week.  The teacher circles if she was happy/sad, ate all/some/most of her lunch and if she had PE/Speech/OT, etc.  There is a blank spot for comments.  Usually these comments are about Ellie's behaviors.  "She sat 30 seconds in circle time!" or frequently "she was very unfocused and all over the place".  I don't really see a lot of academics mentioned even though I know they work on letters and numbers with Ellie.  The thing is, most of her IEP goals are behavior-based and we are having quite a few behavioral issues with Ellie.

So when I got this note, I cried.

I shall translate:

"Much Better Day!"

Activity 1) Sat and played w/ pop up peg toy for 10-12 minutes. (no prompts). she is usually everywhere.

Activity 2) Circle-moving to others' chairs when they stood up, but in general calmer, listening, not eating shirt

Activity 3) Chalkboard-only ate one piece of chalk. Sat and drew w/ markers w/out chewing them up. Sitting well.

Activity 4) Great at art time. Painted, didn't put in mouth, didn't rip it or rub a hole in it. Didn't dump water.

Activity 5) STAR 1-1 Not so good. Under table. grabbing

Lunch-Didn't sit independently, but better until she grabbed a tray and dumped it.

Can you believe it?!?!  She sat and she didn't eat everything or destroy everything.  Girlfriend did pretty good. . .until Activity 5 and lunch.

I am curious, do you all get notes home from school and if so what sorts of things do the teachers tell you about?


In other news, Andrew and I will be hosting our first ever Thanksgiving and I don't cook.  Really, I. do. not. cook.  How we have escaped hosting for this long is beyond me (maybe people were afraid of being poisoned?).  Anyway, I have to do the sides and the dessert.  This will get interesting. I mean how do you have everything served warm at the same time?  Or avoid burning dishes as you attempt to juggle a few sides at once?  The good thing is Andrew is smoking the brisket which will be awesome.  Yes, a brisket.  What?  You thought we were going to have turkey? This is Texas, y'all.  (Actually, we have never made a turkey before, so yes, a brisket.) So, wish us luck!


Sunday, November 10, 2013

An Illness Update: Toxic Synovitis

Last week, I left on Thursday when Ellie couldn't walk and we ended up seeing an incompetent doctor.

Friday morning Ellie finally woke up fever-free (whoot whoot!) and was walking.  Voluntarily.  As in I didn't have to coax her with a cookie. Only, she looked like a drunken sailor.  Right leg crossing over the mid-line, mixed with a wide-based gait, weaving around our living room.

oh what shall you do with a drunken sailor? what shall you do with a drunken sailor?  what shall you do with a drunk sailor early in the morning? Weigh! Heigh! Up she rises. . . .

I apologize, I cannot get that old shanty song out of my head!

Anyway, I put a call into Ellie's regular pediatrician who was rather angry with how her care was handled the day before.  She had us come in immediately.  Bear typically saunters about the office like she owns the place, but this time she was crying and screaming and it really demonstrated to our pedi just how cruddy Ellie was feeling.

At least we know that her range of motion on the left side is good.

After a careful analysis of 3 vials of precious blood violently extracted from Ellie's arm, we learned that she had a virus and mild inflammation.  It did not look like septic arthritis, a bone infection [osteomyelitis], or the dreaded leukemia (sadly, a few members in our Ds community were diagnosed with leukemia when they refused to walk).

This is what "resting" looks like.

It is believed that she does in deed have transient/toxic synovitis.  Essentially, the virus has settled into her right hip.  She is on Motrin and "resting" for the next 1-2 weeks.  By resting, I mean she is not climbing.  Not that she wants to.  Okay, she actually wants to, but physically cannot without a lot of pain. Girlfriend wants to run but when she tries, she falls flat on her face.  Poor thing.  She is walking beautifully about the house and for short distances, but prefers to sit or just simply stand.  She is still under the impression that we will feed her cookies and cupcakes whenever she wants.  She is sadly delusional.

seriously, I don't know where she gets this cupcake idea from
ahem, Andrew

Oh and in terms of bleeding, she had a little bit more, but not as severe as last week.  It just takes time for a fissure to heal.


Thursday, November 7, 2013

Being Forced to Slow Down and Why Can't It ever just be a Cold?!

Warning: this post may be TMI as in I do talk about blood squirting from a bodily orifice.  It is just really one small section of this post so you could just skip that paragraph.

I spent this past week snuggling with my daughter.  You know, sitting on the couch.  Snuggling.  Through an entire Mickey Mouse episode.  An experience that is quite foreign to me and Ellie.

The cost to receive those snuggles was high.  Too high.

I suppose that I should be a bit more specific when I say things about wanting Ellie to slow down, be calmer, or sit-through-one-freakin'-episode-of xyz.  I suppose I should add in "and not be sick".

That's right, I got my snuggles and the Bear slowed down because she was/is sick.  Ellie had an awesome day at school on Monday morning.   To celebrate her awesome behavior, we went to speech therapy. . . and Quizno's.  She did not do so well.  She was quite emotional and teary and didn't eat.  I told Andrew that evening she was coming down with something.  She spiked a fever that night.

Now, typically when Ellie is sick, she likes to pile on 2 or 3 infections at the same time (remember the coxsackie virus/cellulitis/sinusitis episode?) and demand to "play climb slide" because someone forgot to tell her that she is supposed to feel like crap.  This go around, no one needed to tell her.  Girlfriend felt cruddy.

Just breaks your heart, doesn't it?

Since it had been nearly 6 months since our lasts ER visit, Ellie decided it was time to reacquaint herself with the ER staff.  That evening she was straining to poop.  Seriously, nothing of great excitement or really out of the ordinary.  Only when she pooped, a large amount of blood came out.  It then continued to stream, bright red from her little bottom.  Did I mention it was every where?  Up her back, between her legs, on the carpet, all over her old and new diaper?  Did I mention it was BLOOD?!?  Not poop, but blood?! Now, I am certain it wasn't really a large amount, but as a mother, it appeared to be gushing like a geyser and my daughter was clearly going to die by going into hypovolemic shock and clearly had an intestinal bleed.

In the back of my medical mind, I knew she had a rectal fissure from straining.

Guess what we found out at the ER?  Guess?  Yes, a fissure in her rectum.
We also confirmed that she has a fever and a rash, but no other signs of illness.  Diagnosis: virus.

A funny thing about viruses here.  The fevers are rip roaring at night and then can be gone in the morning.  Hence why your child must "fever free for 24 hours" before returning to school.  Wednesday morning she woke up fever-free and was in full bear-itude.  I exclaimed "you are going to school tomorrow, young lady!" as she grins at me from the bathroom sink which she reached by scaling the cabinets with her bare feet.

Of course, by afternoon she was back up to 102.  So much for school!  However, I did get all my snuggles.  The Chunky Chicken only wanted mama.

This brings me to today.  Thursday.  Bear likes to do things in style.

Somebody was refusing to walk.  At first I thought that she was just tired and not feeling well.  She was laying around and falling asleep and whatnot.  Then I realized that SHE COULDN'T WALK.  She wanted the iPad and cried and cried and cried until I carried her over to it.  She tried to stand and fell on her butt.  Andrew and I kept trying to get her to walk and she refused to do anything other than butt scoot using her arms to propel herself forward.

Then I whipped out the big guns.  A cookie.  She took two steps and was severely limping on her right side before she fell back on her butt.  Not wanting to head back over to the ER and be considered frequent fliers, I contacted the pediatrician's office.  Our regular pedi was booked, but they could squeeze us in with another doctor in the practice.

I did not like her.

She was fixed on the rash.  She kept telling me it was roseola because usually after days of high fever the rash appears.  I kept telling her that the rash appeared the same time as the fever.  Plus, I don't care about the damn rash!  I want to know why she isn't walking!!!!  Is her joint or bone infected?  Is it leukemia?  What-Is-It?

Her physical exam was unremarkable aside from the rash and the limping.  Seriously, this kiddo had awesome range of motion of all joints and no redness or swelling.  She did an x-ray of her hip which was negative and continued to talk about the rash being a virus.  Okay, what about the limping?!  I asked about blood work, but was told she hadn't had the fever for 5 days and that if she still has it on day 5 to come back.  Uh, tomorrow is day 5.

Bear refusing to walk this morning.

At this point, I think, but am not entirely sure that her diagnosis is transient or toxic synovitis which is essentially inflammation of the hip (or another joint) that can follow after a virus.

By the time we got home, Bear was walking more, but looked pretty drunk.  She also had no fever.  Depending how things go, we may head back to our pediatrician or even the ER and not this whack-a-doo we just saw. . . and I will be more forceful about the blood draw.  Until then, I shall give my Drunk Sailor Bear some Motrin and tell her to rest.  Ha!  Rest!

Okay, I am really not feeling so great about all of this . . . I think that I may take her back in tomorrow anyway. . . mama gut


Monday, November 4, 2013

ADHD and Ellie

*This is a continuation of the post I wrote last week about SPD and ADHD being the pits.  I really wanted to title this post "ADHD Sucks!" given my state of mind lately. I promise more uplifting posts in the future*

About 65% of the week, my day ends in tears.  My tears and Ellie's tears.  I want to check out at about 6pm.  When Andrew gets home.  The day has been a long battle where there are no clear winners. Not that there is a competition going on or anything. A battle to survive the day, perhaps?

The other 45% of the time, I feel like I imagined those horrible, trying days.  I see what can and should be.  How wonderful, smart, and kind my daughter is.  What she is capable of.  Her infinite amount of potential.

My little girl is ruled by hyperactivity, lack of impulse control, a nonexistent attention span, and sensory seeking behaviors.  All classic hallmarks of ADHD and sensory processing disorder.  These acronyms were suspected back when Ellie was just 22 months old and later confirmed 1 month shy of her 3rd birthday by more than one health care professional.

To say that she is consumed is an understatement.  What looks like bad parenting to the casual observer are actually carefully enacted behavior therapy tactics and a frazzled mother trying to keep her sh*t together.  When what a really want to do is throw myself on the floor and kick and cry and scream.

It is not her fault.

I thought that I understood ADHD, but I did not.  Not until Ellie came along.  The signs of ADHD were there before she started to walk.  My little spider monkey was actually trying to climb before walking.  I didn't really think ADHD was a big deal. I thought, yeah, kids with lots of energy.  Let them run around outside to wear them out.  They are never worn out.  Then I saw this disorder driving my daughter.  My child is consumed and it is affecting her ability to socialize, learn, and even talk.

I worry about Ellie.   I worry that I cannot help her.

One of Ellie's goals in school is to sit in circle time in her chair for 10 seconds.  TEN seconds.  She is 4 years-old and only 10 seconds.  Without stealing another child's chair.  And it is DIFFICULT for her.  Following directions is a near impossible feat.  She hears only part of the command and is then distracted or she hears the entire command and then gets distracted while trying to follow it.  It can take 15 minutes to put her shoes on because I have to constantly redirect her from the toy laying on the floor, the piece of lint under the table, or all the other shoes on the bench.  There are times where she actually gets one shoe on, but is so distracted that she starts wondering around without putting on the second shoe.  Getting dressed is like completing an obstacle course blindfolded.

She has a hard time using the iPad.  She cannot wait for an app to load or a YouTube video to come on without swiping the screen of the iPad.  Then she is agitated and frustrated because she didn't get to use her app or see the video.  Sadly, the iPad is thrown across the room.  Happily, the Otterbox case is a great product.  Or my personal embarrassing favorite, the walking through a restaurant and Ellie impulsively decides to grab a drink off the table and dump it on the ground.

Don't even get me into the climbing.  The crazed climbing with no focus.  This is not climbing to get to an object, but rather climbing because she her little brain tells her that she has to.  No matter how much she climbs, it is never enough.  Try paying attention in school or playing with a friend when your body is screaming at you to climb.

One of the first things we tried, without success, was a gluten-free, dairy-free diet.  We have tried various sensory exercises.  Some of which partially help like brushing, swinging (one of those swings that completely encloses you--in therapy only as those bad boys cost $200), and deep compressions. Heavy work occasionally helps.  Others that did nothing included SPIO vest, weighted vests/blankets, sitting on a bumpy disk.  We use a lot of positive reinforcement and pictures for sitting for small periods and a lot of first:then--first sit on potty, then you get juice.  Or first x therapy, then you get baby doll.  Time outs do nothing.  Other things we tried can be found here at sensory ideas for the home.  For those of you who live near Austin, I can give you details about every park and indoor play scape in a 15 mile radius because I would take her to these play-scapes before therapies to help her focus.  Ellie is the energizer bunny.  She keeps going and going and going.  (This mama bear could use some D-cell batteries for herself because coffee just isn't cutting it!)

I kept hoping this was temporary.  Like the terrible 2s or 3s or even 4s.  That as she matured developmentally, it would just disappear.

It is not a phase.

When Ellie first showed signs of SPD and ADHD, she was evaluated by a developmental pediatrician.  Her regular pediatrician referred us because "I have never seen a child with so much energy".  Our developmental pedi (who was floored by Ellie's endless energy and her ability to move and exam room table) recommended various sensory exercises and ABA therapy (behavioral therapy).  In many cases, preschool-aged children no longer fall under the diagnosis of ADHD after 6 months of ABA therapy.  We sincerely hoped that would be the case for Ellie.

ABA therapy drastically helped with her throwing triads and some of her other troublesome behaviors.  She learned how to sit in a chair, follow routine directions, and I learned a lot of great parenting skills in handling her sensory issues.  We still have ABA therapy once a week and whenever something comes up, I ask her awesome therapist Leslie for advice.  Everyone needs a Miss Leslie to consult!  Early Intervention also helped us in finding chewy tubes and various foods that would help satisfy her oral cravings.

We did it all.  A year later, things were getting better in some areas (sensory) and worse in others (impulsivity and attention and CLIMBING).  At this point, Ellie was almost 3 years-old and was evaluated by the school system. They were afraid to put her in the typical special eduction placement.  I would call the developmental pedi office crying because I felt that I couldn't keep Ellie safe!  I couldn't leave her alone. When I used the bathroom, I would take her in with me, but she would be in the sink flooding our bathroom or hanging from the shower curtain!  I was scared to go grocery shopping because she could climb out of the cart.  I was just plain scared.

After much discussion, Ellie got some respite from her drive to climb in the form of Tenex (guanfacine).  This alpha-agonist is a blood pressure medication that works in the brain.  It is one of two nonstimulant medications approved for the treatment of ADHD (the other being clonidine).  The caveat, there is limited efficacy and it does not work on impulsivity.  Within in one week of trying the Tenex, we saw a huge difference.  Bear didn't seem to be driven by a motor.  She wouldn't get that glazed look in her eyes and climb just because her brain commanded her to.  If she climbed, it was purposeful--to climb a playscape or climb the kitchen island to reach a forbidden item.  She was able to attend a little longer to tasks.  Things were not perfect, but they were better.  She also slept better.  The second assessment for school couldn't believe she was the same child.  The therapists felt that they could make headway on helping her to communicate or develop fine motor skills instead of just running after her.  I was able to read most of a board book for the first time to her.  My little Ellie was still a sassy little girl full of personality, but her motor seeking behaviors had vanished.

Every few months the school, therapists, Andrew and I would notice spikes in her hyperactivity and poor attention and we would increase the dose.  A few months ago, we maxed out on Tenex/guanfacine.  The therapists are having trouble with her lack of attention.  School writes in her daily notes that Ellie is unfocused and not responding to redirection.  Her bedroom curtain rod broke in half due to her attempting a Tarzan move. We rarely go to Quizno's  (recall we went twice a week) because I cannot keep her out of the kitchen or the bathrooms let alone seated long enough to eat.  She has trouble finishing meals because she is so distracted.  The speech therapists believe that her lack words is related to her poor attention span.  That she cannot listen to the whole word or attend to watching the therapist's mouth.  Ellie is becoming more irritable and aggressive.  Her brain is holding her hostage and I cannot help her.

Right now I am doing the best that I can to help my little girl. . . but what if my best isn't good enough?  I love this little girl so much and I just want life to be easier for her.  Why must it be some complicated?

*I wrote this post a few weeks ago.  We have since done a trial of two other medications which have resulted in undesirable side effects.  At this point we are are continuing with the Tenex, but trying to administer it at different times.  It is helping somewhat in the afternoons.  Morning are still difficult, especially before the medication kicks in.

American Academy of Pediatrics ADHD Clinical Practice Guidelines.  Note that there are specific sections for preschool-aged children

CDC-ADHD Recommendations.


A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...