Tuesday, November 18, 2014

Updates: GI and Liver, Back Arthritic Pain

It feel like it has been a while since I wrote a good update on everything that has been going on in the Theurer household. Believe it or not, the reason it has taken me so long is because things are going well and the worry is mostly gone.

Contrary to what it looks like, Ellie is not picking my nose!

ELLIE'S GI UPDATE:

In October, Ellie got moved from twice monthly appointments with the Gastroenterologist, to once every 3 months!  At the last visit, we reviewed all of Ellie's lab work-thyroid panel, metabolic panel, celiac screen, CBC, lead, vitamin D, and a bunch of IgA stuff.  All of which was thankfully normal!  However, she had continued to lose weight.  I requested an Upper GI in hopes of officially ruling out celiac disease, which is something that is more common in people with Down syndrome.  The blood tests can come back as false negatives or false positives repeatedly so the upper GI is the gold-standard for a definitive diagnosis.  The GI doc agreed that if she is still losing weight in 3 months, he would do the Upper GI.

The Good News:

Bear started to eat!  A LOT!  Like 2 croissants, a cup of raspberries, and a zone bar in one sitting.  She has even eaten breakfast a few times.  We still have days where she may not eat more than 200 calories, but they are few and far between.  I am going to have my Chunky Chicken back!



We seem to have a successful bowel regimen for Ellie.  We are continuing with the Miralax and are administering senna for 2 weeks on and 2 weeks off.  Senna is a stimulant laxative, as opposed to osmotic, so the bowel can become dependent on it.  This is why we do not do it everyday.  I was really worried that a full 2 weeks on would trigger dependence, but she seems to do fine on the off weeks.

Liver Scare:
Just when things seem to be going along fine, Ellie freaks us out.  For 3 weeks, Ellie's stools were super pale.  Think flesh-colored.  Clay-colored and white stools can indicate a problem with your bile duct or production of bilirubin.  Bile is used to break down fats and gives stool its brown color.  A liver or gallbladder problem can present as pale or white stools.  After a full on liver panel and an abdominal ultrasound, we learned that Ellie has abnormally small, but normal formed kidneys.  Her blood work came back normal and her liver, spleen, gallbladder, and pancreas were normal!

We do not know why her stools were they way they were, but I am positively relieved that she doesn't have any liver problems!




MY BACK/HIP PAIN, ARTHRITIS, SCIATICA, AND HAMSTRING INJURY:

Back in July, I managed to tear my hamstring and obturator externus by falling a whopping 6-inches to the ground.  I was on crutches for about 3 weeks and in some serious pain.  My back pain, which had been improving, took on a downward spiral after this injury.  I felt like I was back to baseline, but this time with the posterior of my thigh and groin on fire.  My Dr. K had me do a trial of Neurontin to help with nerve pain.  Let's just say that it really does help with nerve pain, but it can also headaches, fatigue, and dizziness.  I found myself with an incapacitating headache and nearly passing out.  I tried to push through and see if the side effects would subside, but they did not. Needless to say, Neurontin was not a good fit for me.

It was finally determined by my physical rehab doc that I would need a 2nd opinion (good thing I already had one lined up!).  There was pretty much nothing more that he could do (already tried pain management, TENS unit, PT, steroid shots, chiropractic care which made it worse).  As a farewell gift, he placed a steroid shot into my right sacroiliac joint and another into my ischeal tuberosity bursa--think the top part of the hamstring near your butt.

Miracles do occur!  I was told that the SI shot would probably do nothing as only 1-3% of people with back pain have it stem from their SI joint.  Um, he was wrong.  I had searing nerve pain all the way down to my toes when he injected the steroids.  To me, this means it worked.  My pain improved in a matter of 5 days.  My bursa shot freaking cured my hamstring immediately.  I could walk!  I have lost a lot of hamstring strength and flexibility and I am struggling to regain it. Honestly, I wonder if my hamstring will ever be back to where it was before my fall.

A few weeks later, I met with Dr. S, a neurosurgeon.  He reviewed my MRI and said he saw the following:

Compressed discs with herniation into the spinal column L4-L5 and L5-S1
Connective tissue tears in the disc L4-S1
Bony deformities and enlargement of the lumbar facets joints L3-S1 (aka facet hypertrophy)
Minor nerve impingement due to the enlarged facet joints decreasing space for nerve movement.

At this point, I do not need surgery.  Whoooohoooooo! Actually, for my issues, there isn't any type of surgery that would help me.  I sort of figured this and I didn't think my pain and activity limitations were severe enough for surgery anyway.  If I start to have significant nerve problems, he can file down my facet joints.  Oh fun. He also told me that I will always  have pain and it will get worse as I age. He is just full of sunshine and rainbows!  Dr. S did say that since the herniations are acute injuries, the pain from that will subside in a few months.  Until then, I am to build up my core muscles through pilates.  Good thing I have been doing PiYo.  Abs of steel, baby.

My favorite stretch for my hip flexors

I just completed the 60 days of PiYo which is a combination of pilates and yoga.  The Lower Define workout really helps my back and hip.  The Warrior poses and Pigeon bring the most relief.  I am able to sit for longer periods.  For the last month, I have been able to drive Ellie to her horse therapy and dance class without excruciating pain.  I am very functional most of the day, but then I am pretty sore by the evening.  At night, I have a hard time sleeping.  Still, I am much happier, stronger, and less depressed.

Addendum: November 18, 2014
I think I jinxed it all by writing this post.

For the past few days, my back has not been all that great.  I am super stiff in the morning.  As the day goes on, it starts to hurt so that by bedtime, I have trouble sleeping due to pain.  It is not unbearable, but it is enough that I put a call into my Physical Rehab doc.  I imagine it will be several days before I hear back.  Until then, I am having lots of intimate relations with my ice pack.

Most likely because Ellie is eating again, she is all backed up.  We double her Miralax dose at the end of last week.  Exciting news: the last two days, Ellie requested to sit on the potty!
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Saturday, November 8, 2014

Awareness to Acceptance: discrimination by a Bath and Body Works employee

In October, many of us with children with Down syndrome promoted awareness.  Yet, I believe that most people are aware that there are people with Down syndrome in the general population.  Are there still misconceptions, yes.  Because of this, we need to shift our focus to acceptance.



Discrimination towards those with special needs is still running rampant.  Whether it be calling them r*tarded, bullying them in school, not making public places handicap accessible, denying childcare to my daughter, or refusing to service customers who have special needs, discrimination still exists.

Sadly, these incidents are rarely reported in the news.  They take a back burner to discrimination towards those of a different race, gender, or sexual orientation.  Yet, those with special needs are often unable to stand up for themselves and those who do, are rarely heard and taken seriously.

This little girl has ALREADY faced discrimination based off her having Down syndrome.

This past week, an employee at a St. Louis Bath and Body Works in a mall refused to allow a life skills class into the store (Guess what? I actually worked at this mall as a teen) claiming that it would affect their sales percentage. There are so many things that I can say about this:

1. The employee was discriminating against those with special needs.

2. What is different about people with special needs being in the store not buying anything vs. myself being in the and not buying anything?

3.  Why did she assume that the students wouldn't purchase anything? Life skills teaches just that, skills needed to navigate society--this involves learning what things cost and how to pay for them.

4. She is not a corporate owner, nor does she earn an commission so why should she care about sales percentages? (or maybe it is corporate culture where she must keep a certain percentage of sales to keep the store open?)

5. Why isn't compassion inherent?  Why isn't it embedded into our hearts?  Why must it be taught?

I do not know the answers, but what matters is that she passed judgement on a group of people without warrant.  All because they are different. She made a judgment of her own, not the company, to refuse service to those special needs.  She made assumptions and was ignorant.

Was she is in the wrong?  Yes.  Was she ignorant?  Yes.  Would better training and education help?  Maybe.



A few good things:

This story made the news.  While I wish that this incident never happened, the news actually thought this was worthy for the public to read.  The journalist was appalled by her behavior.  One can hope that by bringing light to this incident in a public forum will show others in society that discrimination towards those with special needs is wrong.

Bath and Body Works took immediate action.  Rather than ignoring this incident or giving a half-*ssed apology, a sincere apology was made as well as a plan to implement employee training to prevent this from happening again.   Sadly, this was the 2nd incident at a Bath and Body Works store (there was one in Alabama in March) in less than a year.  Why didn't they implement training back then? None the less, the apology both times was swift, which I didn't see with the murder of Ethan Saylor.

I will never stop advocating.

I am frustrated, angry, and sad that these things still happen to those with special needs.  It breaks my heart that my daughter, Ellie, will have to face this horrendous discrimination throughout her life.  That she may be bullied in school, made fun of in public, and now, denied a chance to even shop or learn how to live on her own! How can I help my daughter to become independent and contribute to society when society will not allow her to learn the tools to do so?! So while it is all fine and good to promote awareness, we need to obliterate common misconceptions that start as a fetus all the way through adulthood, but to also teach what it means to accept those who may be different from us.

While I may be tired of fighting, I will never stop.

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Monday, November 3, 2014

Sleepless in Austin and Princess Ellie Bellie Bear

THE BEGINNING

Back in mid-August, Ellie started to exhibit some strange sleep patterns.  She started to wake up 2-3 times a week at 3:30am.  Ellie had a sinus infection that lasted nearly 3 weeks and we attributed her sleeplessness to the nasty, snotty nose.  Other than that, nothing had changed; medication-wise or health-wise.

By late-September, Andrew & I realized that these very early morning wakings were not going away.  I contacted Ellie's neurologist and they recommended administering 3mg of Melatonin before bed.  The introduction of melatonin decreased her early risings to just once/week.  Until mid-October, when it started back up again.

Interpretive dance as Elsa



UP BEFORE THE ROOSTERS

When I say that Ellie is up early.  I mean early.  Plus, she is up for the day.  That means, she does not fall back asleep until the following night.

The average preschooler should get 10-13 hours of sleep per night.  Two to 3 days a week, Ellie is getting anywhere from 5-7 hours.

Her magic time is 3:30am.  Of course there are those times when 2:00am is perfect.  Yet, last night was Midnight.  Yes, 12:00am.  Just 1.5 hours after I went to bed.

One would think that she would nap, not so.  Occasionally, she might take a short little snooze.  This is usually in the car on the way to and/or from her later therapies.

Did I mention that she wakes up HAPPY?!  I am so not a morning person.  I could sleep in until 10am and still be grumpy without a cup or pot of coffee. Nope, Ellie wakes up at 2:30am ready to conquer the world.

She plays and plays and plays.  Fortunately, she has not figured out how to turn the door knob yet (knock-on-wood).  She is content to build with blocks, rummage through her closet, and host tea parties.  That being said, she is LOUD!  She communicates via vowel sounds:  "A", "AYE", "EEEEE", "Ahhhhh", "ooooooohhhhh!". That means, the entire house hold is awake.  And we are cranky.

Ellie decided to switch costumes mid-dance class

While Ellie may be happy in the early morning, but lunch time, she is a wild mess.  Sleep deprivation, leads to hyperactivity.  This means, it looks like Ellie never got her Adderall.  Halfway through school, she is hyper and impulsive  By 4pm, she is cranky, tired, and having epic tantrums.


WHAT WE HAVE TRIED

1. Keeping bedtime the same no matter what time she wakes up.
2. Putting her to bed earlier everyday.
3. Putting her to bed later everyday.
4. Maintain good sleep hygiene with the same 3-part routine each night
5. Blankie goes to bed.
6. Light Blocking shade and blinds over the shade.
7. White noise using an air purifier.

Snow White dress, Elsa crown


Medical:
1. Tonsillectomy & Adenoidectomy due to sleep apnea and chronic sinusitis 18 months ago.
2. Continue Tenex (short -acting guanfacine) at 3 x day with the last dose being before bed--side effect for Ellie is fatigue)
3. Add in 3mg of Melatonin 30-60 minutes before bed.
4. Testing for : thyroid panel, thyroid antibodies, liver panel with ultrasound, CBC, complete metabolic panel, IgA testing, complete celiac's screen, C-reactive protein, sed rate.
5. Repeat of above bloodwork.
6. GI problems resolved!!!!!  Happy Dance!  So we know it is diarrhea, cramping, constipation, or hunger keeping her awake.--SHE IS EATING!!!!




The Plan of Action aka What Mama Wants to Try
Essential oils
Sleep study to further rule out sleep apnea
Trial of non-stimulant ADHD medication as the ADHD brain wiring may be preventing her from staying asleep

Big plan after the neurologist didn't call back for over 48 hours last week: call every single day until we get a game plan.



HOW MAMA BEAR FEELS

Do I honestly have to spell it out?

I am Snoopy.  Linus is Ellie with her blankie


I am hoping to see more of this!



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Monday, October 27, 2014

It's the Great Pumpkin, Ellie Bear

Every year, we have typically gone to a pumpkin patch complete with pumpkin painting, corn mazes, and hayrides.  This year, we had great plans to go with Ellie's buddy Jack to the Barton Hills Farm on Columbus Day.  Our plans changed.  Instead of going to the pumpkin patch, we spend Ellie's day off school doing the most excited, fun-filled thing ever--getting blood work and an abdominal ultrasound.  Don't worry, everything turned out okay.  We thought that she might have had a bile duct blockage, but everything looks good!


We decided to make it up to Ellie by going to the local nursery just a few blocks away from us.  They tend to have a nice selection of pumpkins.  When we got to Red Barn, there was no parking.  For blocks.  There was a line to get into the nursery.  As it turns out, we managed to go on their Fall Festival day.  It was crowded.  Note: Andrew and I don't do crowds.  It is our "old" age showing.


Ellie was enthralled with the pumpkins.  So much so that she didn't see the bouncy house. . . with the rather large line.  She wanted to climb into the pumpkin displays and filled her enter bag with pumpkins.


She liked the large pumpkins, but it was the Ellie-sized ones that she really wanted.  I managed to corral her and keep her pumpkin numbers down to four. 


As with our year tradition, we sat outside and painted out pumpkins.  I held one back for later this week to put stickers on it. 








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