The Pumpkin Patch and Updates - GI, Urinary, Sleep Apnea, Cervical issues, Etc

You all should be proud of me as it has only been 3 weeks since my last blog post.  Longtime Ellie Bellie Bear readers, do you all remember back in the day when I wrote at least 3 posts a week?  Progress!  Seriously, everyone, I have 4 or 5 open blog posts sitting in the queue waiting to be completed.  Such as the one that I wrote way back in June on lice.  I really need to finish that one up because Ellie has lice again back in September!

As usual, things have been chaotic, but I made sure that this past Columbus Day we spent part of the day doing something enjoyable.  We had such beautiful weather that Ellie and I spend the day outside and then too a trip to the local nursery to pick out a pumpkin. . . er pumpkins.  Bear was the only child there and there were two lovely ladies picking out flowers and 3 landscaping guys as the Red Barn Nursery.  They all held little secret smiles as she would go running by (and when she ran up to the landscaping dude and gave him high-5s).  My daughter, the entertainment at the local nursery.  The frolicking fairy princess.

Ellie Bear thought it was quite the game to gather up pumpkins of various sizes to add them to our cart.  The Chunky Chicken was under the mistaken impression that was going bring those 5 or 6 of those personal-sized pumpkins and 12 minute pumpkins.  She would dance (yes, dance, frolic, sashay) her way back to the cart with a mini pumpkin in each hand.  Perhaps the most entertaining part of the trip was Ellie's vast fixation on gourds.  Especially the funky looking green one.  She was adamant that we take that one home with us.  As well as the one that I think looked kind of like a light tan-colored, bowing goose.

Now, what is the Bear going to be for Halloween?  That is a great question because I don't know the answer to that either!  Ellie hasn't been into dress up lately.  I was thinking Flash dance given her propensity to don leg warmers during dance class.  However, I imagine she will saunter about the neighborhood in her glow-in-the-dark Mickey Mouse pajamas like the little diva that she is.

Ellie spends time in both special education classroom [FAC] and general kindergarten.  Of course I signed up to be room mom in the kinder class.  Several people have asked "are you kidding me?!  Don't you know that room mom is a lot of work?".  Yes, it is yet it is always a great way to meet people and be involved at the school. (Maybe now isn't the time to also mention that I am the inclusion parent liaison as well).  Ellie's school no longer offers Halloween parties.  Pumpkin Math does not count, folks.  So this past Saturday, all of us room mom's in Ellie's kinder class though it was be fun to host a mini Fall -Festival at a local park with snacks, crafts, and goodie bags and with costumes being optional.  All of the children had great fun and it was exciting to hear several of the boys say "Ellie's here!  Hi Ellie".  Ellie liked her alone time, but she still did well socializing with the other kiddos.  Several parents all came up to me to share that their child talks about Ellie at home saying that "she is in the class some of the time, but she is in two classes. I like it better when she is in my class". Andrew and I had the chance to meet many of the parents. To say that her school and her kinder class is welcoming is an understatement.  We are thrilled to be a part of this community!

Pumpkin Dancer

Now for some very quick updates.  I promise to write more in-depth posts later, but since I have been asked by a few people for news, here you go:


GI / Urology
For a while the constipation was worse.  We were doing a lot of enemas just to get her to go.  When I called GI, they recommended lactulose.  I imagine you all heard my maniacal laughter at you own homes as this child has been on lactulose in the past (you know that neon green liquid that she has to swallow 1 TABLESPOON twice a day) and it did not work.  The telephone call seemed to be the best treatment because she has been uncorked now.

Urology - she was seen 2 days after my post! No real answers.  Kidneys are good.  Yay!  Possibly related to constipation (um, not completely because she has been backed up way worse and was still urinating several times a day) and possibly a disconnect between bladder contraction and urinary sphincter.  We watch and wait.  If she gets kidney damage, we will look into doing routine, daily catheterizing - please say a prayer that we do not get to that!

Weight - so she has either gained a 1/2 pound or 1.5 lbs. depending on the scale since we started the appetite stimulant in July.  Wooohooooo!!!!!!  AND she has grown in height as all her pants are too short.  First time in over 2 years that I have needed to purchase new clothing for Ellie

Sleep Apnea/ENT:
Last week we met for the Sleep Apnea Clinic which is a double appointment with an airway ENT and the sleep pulmonologist.   It didn't go as planned as the ENT got called away to an emergency.  These things happen, but I was practically in tears after we left the clinic.  We waited months for the appointment.  Her apnea/snoring is worse.  And I pulled her out of school for nothing.

Later that night I got a call from the nurse.  The ENT reviewed the Cine MRI of her head and neck.  She has complete obstruction at the level of the epiglottis.  It could be epiglottis insufficiency from laryngomalacia (aka floppy airway) or due to large lingual tonsils (tonsils below the base of the tongue - not the ones you see when you open your mouth) pushing on the glottis.  We will do a laryngoscope at the rescheduled visit which is in 1.5 weeks.

Surprise MRI Finding: upon looking at the Cine MRI, it was determined that she has widening at the C1-C2 vertebrae suggesting instability.  Aka Atlanta-Axial Instability.  About 15% of people with Down syndrome have this, but for only 1-2% of the people, this is an issue. Right now, Ellie is scheduled to get repeat lateral neck X-rays to determine if she does indeed have AAI.  It does make me wonder, can the instability cause Ellie's bowel and bladder issues?

Me: I think this also needs to be its own blog post, but it will explain why I have neglected the blog lately.  I am still having massive issues with my lower back and sacroiliac.  The sciatica is mostly resolved.  I did receive a nerve block back in May, but it wore off after only 2 months.  The last 4-5 months my neck has been a mess. With lots of pain and signs of arthritis from C3-T1.  Certain movements cause pain and/or numbness down my left arm.  I have had several shots, chiropractic appointments, therapeutic massages, and visits with my pain and physical rehab doctor.  I have also been diagnosed with fibromyalgia.  I was in a car accident last month which exacerbated everything.  Last week I got a neck X-ray which showed that my clavicle is really messed up where it connects to the breastbone and I am waiting for MRI results of my neck and lower back.  Some days are difficult to get out of bed, but I am trying my best to eat well and continue with my PiYo exercises.



Follow us on Facebook! https://www.facebook.com/pages/The-Chronicles-of-Ellie-Bellie-Bear/216738345037166

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!

Follow us on Facebook!
http://www.facebook.com/annatheurerfitness
http://www.beachbodycoach.com/annatheurer
The Chronicles of Ellie Bellie Bear FB Page

Lordosis, Herniated Discs, Pinched Nerve, and Epidural Steroid Shots

Ellie Bear pic at bottom.

I hope to be back on my feet soon!  Okay more like back to sitting soon.  I think that the least time I blogged I mentioned that I was having severe lower back and hip pain and as such could barely sit.  Hence why I am typing standing up!  Since then, I managed to pinch a nerve in my next while buckling Ellie into her car seat.  A seemingly innocent movement that led to severe pain between the shoulder blades (referred pain) and numbness and tingling in my right arm.  Sorry for that type-os!

First off, I have lordosis aka swayback:

Photo: www.spinelifts.com

This puts added pressure on my lower spine and pelvic area.

This lead to pain.  Unbeknownst to me and the doc, we thought it is due to something called lumbar facet something or other.  A MRI revealed that he was wrong and I have not one but TWO problems. Yay!  Yippee!  Ever the over-achiever!

I have two torn and herniated discs at L4/L5 and at L5/S1.  I also have spinal arthritis.  Goody.

Photo: www.medicalexhibits.com

Lumbar Radiculopathy
Hence the hip and thigh pain I have.
Photo: Emory Neuroscience 

www.voaspine.com

We tried physical therapy to build up core muscles and maintain a proper pelvic tilt to improve posture.  This helped my lower back but exacerbated my hip.  After 3 weeks, I quit. Yes, I was a quitter.  After physical therapy failed to alleviate the pain and pressure in my lower back, hip, and thigh, we turned to epidural corticosteroid shots.

Photo: www.patients.darthmouth-hitchcock.org

Great description of the procedure
Photo: www.baystatepain.com

I had two shots in the problem areas yesterday.  I was under the mistaken impression that this was going to be a piece of cake since I had an epidural when I had Ellie.  Wrong!  I was delusional.  The pain was so severe as the steroid was going in that I may have said a few choice words that are not appropriate for this blog.  Two shots, two times my nerves were on fire--all the say down my leg to my toes, then all the way through my right lower back, hip, buttocks, and thigh.  I was left with 10 out of 10 pain (compared to my 6/10 prior to the procedure) and a numb right leg.  This is a common occurrence since there is pressure on the disc due to the added fluid the steroid creates.  As it dissipates, it will improve.  Steroid shots can take 3-5 days to decrease the pain and then may take up to 21 days to reach full benefit.

Please say a prayer that this works.  I need to get back to PT, exercise, core building exercises (to pull my pelvis into correct alignment), and stretching.

Just to tie you all over, here is a pic of the ever-stylish Bear.  She is channeling Carmen Miranda:

References:

Lordosis.  Mount Sinai Hospital.  http://www.mountsinai.org/patient-care/health-library/diseases-and-conditions/lordosis

Cervical Radiculopathy (pinched nerve in neck).  University of Maryland Medical Center. http://umm.edu/programs/spine/health/guides/cervical-radiculopathy

What is a herniated disc, pinched nerve, bulging disc? Spine-Health. http://www.spine-health.com/conditions/herniated-disc/whats-a-herniated-disc-pinched-nerve-bulging-disc

Lumbar Epidural Steroid Injections for Lumbar Herniated Discs and Sciatica.  Spine-Health. http://www.spine-health.com/treatment/injections/lumbar-epidural-steroid-injections-low-back-pain-and-sciatica