Upper Endoscopy - some answers and some questions

I wanted to give a quick little update as Bear had her upper endoscopy on Friday.  I hear you all snickering about the "quick" part because I am not exactly known for my brevity.

Upper GI or upper endoscopy or an esophagogastroduodenoscopy:  Whatever you want to call it involves inserting a lighted tube through the mouth, down the esophagus, and into the stomach and duodenum.  The duodenum is the upper 3rd of the small intestine.  This tube has camera that essentially allows the doc to see the insides of your upper gastrointestinal tract to look for reflux, ulcers, tumors, etc. and allows for biopsies.

Bear actually had one back in August of 2011 because she was Little Miss Spits A Lot with her reflux projectile vomiting.  Funny thing, is that after she got the endoscopy, she stopped spitting up.  It was as though the test cured the reflux.  We couldn't completely 100% rule out celiac based off of this upper GI because she has barely started to consume gluten after testing out of an oat allergy (yes, a random oat anaphylactic allergy).  Oats are often grown next to wheat or manufactured in the same plants as wheat, which is why we pretty much stuck to rice.

There are two main differences between the endoscopy results from 2011 and this past Friday.  The one from 2011 showed a beautifully pink and normal upper GI tract.  The one from Friday did not.

Bear's esophagus was beautiful. No signs of reflux or anything exciting like that.  Her stomach, however, is quite angry.  Red.  Inflamed.  Basically, she has gastritis.  The GI doc did a rapid test for H pylori, which is a type of bacteria that causes ulcers.  It was negative.  He will send a sample to the lab to do a more conclusive test.  There is also the possibility that one or some of her medications are causing the gastritis.  Or it may be something else.  The upper part of her duodenum is also not very happy with marked pockets of inflammation aka duodenitis.  This could be from leaking stomach acid into the small intestine, an autoimmune disorder such as celiac disease, lactose intolerance, or some other inflammatory process. The lower portion of the duodenum appears normal.

Upper GI of esophagus through duodenum (upper part of small intestine):
all areas pale pink with no signs of ulceration or inflammation.

Upper GI: Abnormal (I apologize for poor quality)
Note the redness in the 2 views of the stomach as well as a small ulceration in the upper duodenum.
The yellow is bile , which is a normal finding.

Seven tissue biopsies were taken and have been sent to the lab.  It will be 1-2 weeks before we know the results.  Based off those results, we will have a clearer idea as to what is causing the inflammation, what other tests need to be run, and a treatment plan.  Interestingly, it may have nothing to do with her constipation issues, but probably has had a significant impact on her poor appetite and her poor weight gain even with the appetites stimulant..  It is a lot of wait and see.  In the meantime, we are going to start her on Protonix, a proton pump inhibitor similar to prilosec ,which well help decrease stomach acid production and allow her stomach to heal.

To say that I am stressed out is an understatement.  I really thought everything was going to come back normal. How long has this been going on?  Why didn't the GI doc agree do the scope earlier?  How could I not know that my daughter was/is in pain?!  Oh how I wish Ellie was able to communicate and tell me what hurts and bothers her!

Ellie Bear vs. the OR:
We were fortunate that Ellie was able to have her procedure at the outpatient day surgery center rather than in the hospital OR.  It was a much more pleasant experience for the most part.  Well, as pleasant as a surgical center can be. She did great in the waiting room, but then lost it when we got pulled back into pre-op.  She saw those hospital beds and knew what was coming.  This was  her 3rd time under anesthesia in the past 5 months so she remembered how cruddy she feels afterwards.  She calmed down with the help of her iPad, a fresh coloring book with color wonder markers, and a new book . . .  until the surgeon, charge nurse, and anesthesiologist showed up, which is when she displayed her super human Bearity Bear strength and shenanigans.  Ellie gave us a little trouble coming out of anesthesia.  Probably because she wanted some beauty sleep, but as soon as she was up, she was wild!  Girlfriend is a cranky pants, combative little toot post-surgery.  She screamed the entire way home and continued to be agitated even after she ate 3 chocolate frosted donuts.  A few hours later, she was back to her usual perky, spunky self.




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GI Situation, Foreign Body, Failure to Thrive

*Part 1: written on 12/27/2015

While several children with Down syndrome are more likely to have some constipation due to their low muscle tone, Ellie's extreme gastroinstestinal issues are not related to her sporting an extra 21st chromosome.

Ellie has something called moderate - severe delayed colonic transit.  Something that was confirmed last year via Sitzmaker study.  What this means is that the stool moves very very slowly through her small and large intestines.  Due to the sluggish nature, this allows for more and more water to be pulled out of the stool and reabsorbed into the intestinal walls.  What this means is her poop becomes hard a rock moves even slower.  This is something that cannot be measured by dietary measures along such a increased fiber, prune juice, increase in fluids, coconut oil, or diet high in magnesium  Diet is a part of her bowel regime, but she also on 2 daily osmotic laxatives (these are laxatives that push water into the stool).  She is on a stimulant laxative (Senna) two weeks on and two weeks off and that helps with intestinal movement.  She cannot take the Senna Lax all the time because as a stimulant laxative, the bowel can become dependent on it.  For the past few months, we have increased our use of enemas.  I am not pleased.  Andrew and I refuse to get into a situation where it is 9-10 days without pooping and necessitating a hospitalization.  For that reason, if she doesn't go within 5 days or we see her stop eating/drinking,  she gets 3 enemas - one for 3 consecutive days.  The reason for this is because the first day nothing happens.  The saline just comes out 20 minutes later.  The second day may produce something or it may not.  Day 3 works!

Why am I telling you all of this?  Well just before Christmas, we narrowly avoided a hospitalization.  Doesn't everyone want to spend Christmas week in the hospital?  After Ellie's surgery around Thanksgiving, we knew there would be trouble.  Narcotic pain meds actually cause constipation.  Ellie was on them for 4 days.  I had the unrealistic hope that her antibiotic would counteract the GI side effects or Lortab, but we were wrong.  Since then, we have not been able to get a handle on things.  The enemas were only producing small amounts of poop and she was bloated.  I finally put the call into GI.  They wanted to obtain an abdominal x-ray to determine her fecal load.  Okay, I think that is funny "fecal load".  Sorry, it is juvenile of me, but one has to have a bit of humor in times like these!

The x-ray was interesting. . .

x-ray tech: Did Ellie ever have some kind of GI surgery?
Me: no
x-ray tech: Like something with clips or clamps?
Me: no
x-ray tech: what about bladder or ureter surgery?
Me: No.  Better let me take a look.

Now, not that I am exactly an expert at reading X-rays or anything, but I can tell a foreign body when I see one. . . and tons of POOP!

This x-ray is a bit reversed in that sold objects and bone should appear white while air /gas should appear black.
Note all the gas and large amount of fecal content throughout the entire colon pushing up on her diaphragm.
Red Arrow = foreign body in the pelvic region

As it turns out, the GI specialist didn't give a flying rat's patootie about the foreign body.  "Oh that will just be pooped out" only, my child doesn't poop!  That is the problem here.

Here was his big plan: an at home, 3 day cleanse.  If she didn't expel a substantial amount of stool by that Monday, she would be admitted to the hospital.  The cleanse was going to involve continuing the above medications while adding in 3 days of Milk of Magnesia, 3 days of fleets enemas, and a Magnesium Citrate.

Magnesium Citrate is nasty as all get out.  It is fizzy, but not like soda fizz.  Think more along the lines of pouring vinegar on baking soda fizz.  Only it tastes like liquid fizzy chalk with some flavoring - citrus, cherry, or grape.  Now they will go on about serving it very cold and adding in crystal lite or Mio drops and what not.  They are delusional.  I gag and vomit with just a few sips so imagine my developmentally delayed 6 year old having to drink 1/2 bottle.  Riiiigggghhhhttt.

Needless today I busted out laughing on the phone and told them that it wasn't going to happen, but I would add in the MOM and do the enemas.

--------

Well, I needed to eat my words. She did poop is out.  The next day.  It was one of those erasers that you put on top of a pencil.  My guess is she used her teeth to pull it off the pencil and swallowed it by accident.

She had a yellow one of these bad boys.
How she didn't choke when it went down surprised me.
It happened at school.  She is an eraser thief.

That cleanse seemed to work because she wouldn't stop pooping.  . .  until she reverted back to her old ways.  We had to repeat an enema on New Years Eve (we totally know how to ring in the New Year) and start this new medication called Amitiza.  It seems to be working!  We are continuing with the Miralax and have cut the lactulose down to once a day.  She is eating a bit more than usual too. This is exciting!

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*Update: 1/21/2016
I spoke too soon.  She hasn't gone in over 4 days.  I know 4 days doesn't sound like a huge deal, but this is kind of how things go.  She does great for 3-7 days and then suddenly nothing. Nada. Zip.  Her appetite isn't horrible, but it is less than it was last week.  We saw her GI doctor today.  Apparently, she may be one of those kids what will require weekly enemas for life.  I am not accepting this.

A few things from today's visit:
1. Ellie has gained 2 lbs!!!!  She has also gotten a bit taller which I knew about last month when some of her pants got too short.  TWO POUNDS!!!  She is slowly getting back to wear she was ~ 2 years ago.  Soon to be a Chunky Chicken again!
2. I convinced the doctor that Magnesium Citrate is nasty.  That he needs to go and try it himself so he can realize just how much he is asking of his patients.
3. The doc finally realizes that her constipation is out of control and that it is time to do more tests.  If she has something like Celiac's, her gut will be inflamed and damaged.
4. Next Friday, Ellie Bear is getting an upper endoscopy to rule out celiacs once an for all.  This is where they take a small noodle-like scope through the nose - esophagus- stomach- duodenum (upper portion of small intestine).  It allows the doc to look at all the mucosa to see if there are ulcers, reflux, inflammation, polyps, etc and to also take biopsies.
5.  If she has celiacs disease, she will be going gluten free.  If not, then she is going to see her other GI doc who specializes in motility disorders and will have a colonic manometry.  I'll spare you the details for now, but it is similar to the anorectal manonmetry she had 18 months ago to rule out Hirschsprung's Disease.

Photo: ramsayhealth.co.uk

All in all, I am glad that we are finally trying to get to the bottom of the GI issues.  For so long, I have felt like the GI specialists were focused more on treating the constipation rather than trying to discover the reason behind it.  Hopefully, I won't take forever to give you all an update after next week's procedure.  I have been dealing with some health issues these past several months, which sadly means the blog has taken a back seat. I have a Christmas post that I still need to publish!





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What happened to my Chunky Chicken?

Those of you who were following The Chronicles of Ellie Bellie Bear "back in the day" know that my Ellie was and still is affectionately referred to as "The Chunky Chicken".  She came by this nickname because she was, well chunky.  She had delicious rolls of fat.  My wee little, chubby, sweet cheeks Ellie Bear.  Thighs that you could just munch on.  My Bear was CHUNKY!

Don't you just want much on those cheeks???

Rolls of baby fat!

As with all children, the fat tends to melt away as they grown in height and age.  The baby face disappears.  Usually, the big belly follows, but in the many cases of those with low muscles tone and Down syndrome, the buddha belly is a permanent accessory through adulthood.

Now, my Chunky Chicken has skinny little chicken legs and skinny, little bony chicken wings for shoulders.  Her upper ribs are sticking out of her chest.  She is "chunky" chicken no more.  My almost 6 year-old daughter barely weighs 30 lbs and is in 3T-4T clothing!  She is pretty much wearing the same clothes that she wore last year except for a few items that are now too short.

No more baby face as Ellie is now a "big girl"

Growing up, I was always a skinny little runt.  I barely registered on the growth chart for both weight and height.  So it would have been no surprise if my own daughter was a bit on the petite side.  For Ellie, she barely registers on the growth chart (typical and Ds chart) for weight and is around 70% for height on the Ds growth chart (okay, she is now 50% on height).  She wasn't always that tiny.  Over the past 12 months, I have watched her weight plummet and then has super tiny growth spurts of gaining a few ounces, dropping a few ounces.  I know that I blogged about this last year when we were dealing with GI issues.

This is a Down syndrome growth chart for girls ages 2-18 years
You can see that she has fallen off and flat lined this past year with her weight.
For her length, the velocity of growth is decreasing and she fell from 75% to 50%.

How her numbers look on a typical growth chart [ Right] as well a calculation of her weight:height ratio [Left].
As you can see, the Ds Growth Chart gives a more accurate portrayal on where she falls within peers her age who also have Down syndrome.

The GI issues haven't changed much other than there have been no new hospitalizations related to constipation (a huge success in my book).  She has a few good weeks of regularity followed by either explosions running down her leg into her boots (we have gone through more pairs of shoes this way) to then 4-9 days of being completely blocked up.  That being said, when she does go a while without a bowel movement, we have seen success with either 2 suppositories or 2 nights of enemas vs. the usual 3 enemas or hospitalization.

The thing is, girlfriend eats.  She is chowing down on a croissant with Nutella in this pic.  Now she may not eat much compared to another child her age, but she is eating more than she was a few months ago.  Actually,y she ate a ton a few weeks ago while visiting my parents and a tried several new foods so I was pretty shocked to learn that she only gained 2 ounces in the past 6 months.

The thing is, 15 months ago when things were really bad, she didn't lose any weight.  July of last year was like a light switch went off.  Ellie had anorectal manometry under anesthesia to rule out Hirschsprung's (which she doesn't have) and then didn't go for 9 days.  In one week, she lost 1.5 lbs and then continued to drop through September, reaching 28.5 lb (original weight 32.5).  With us diligently staying on top of her constipation, implementing various feeding techniques, and trying to add calories to her diet, Ellie's weight has finally crept back up to 30 lbs.  However, we learned at her follow-up GI appointment last week that she only gained 2 ounces since her last office visit . . . 6 months prior.  This is frustrating because Ellie is actually eating more (still not as much as a typical 5-6 year old) - both in quantity and in variety of foods.  Because of this, Ellie gets to keep her Failure to Thrive label and we are starting her on Periactin.

This is how Ellie's BMI falls on the pediatric chart.
I have no idea if there is a BMI chart specific for individuals with Down syndrome.

I knew that Ellie was thin, but she was always wearing t-shirts or dresses and with her buddha belly, she never looked terribly skinny.  So, I never truly realized how bony she was until I snapped this pic of her in a halter top.  Granted, she is running and moving her arms back-and-forth which I believe accentuates her boniness.  

Periactin or Cyproheptadine is a type of antihistamine that also has anticholinergic properties and an affect on serotonin.  So yes, it is used to treat allergies, but it also has great success in the treatment some psych related issues such as serotonin syndrome and also treating in pediatric migraines.  One side effect to Periactin is weight gain.  It is considered to be an appetite stimulant for people who have poor weight gain.  We have discussed this med periodically in the past year, but were reluctant to start her on it as one of its major side effects is constipation.  Right. . . . let's put the kid who doesn't poop for 9 days on a med that causes constipation!  However, we are at a point where even though she is eating more, it still isn't enough and she is not putting on the weight.

She still fits in the dress on the left, but it is a bit shorter.
Same shoes and still too big!

As her doc has been saying repeatedly "if she doesn't start to gain weight in the next x # of months, we will do an upper GI to completely rule out celiacs" -- well, those x # of months keep changing and  I personally feel it is time to officially rule out celiac, especially since her upper GI from 22 months of age showed small white blood cell focalization of the small intestine which could have been an early indicator.  Why is he dragging his feet?  I am not sure, but we will revisit the upper GI in 6 months if she doesn't start putting on the pounds.

My little picky eater ate 5 bits of brisket this past weekend and tried raw onions.
Truth: she spent more time playing with the onions and pickles than eating - telling us "circle".

*Update: We are day 5 into the periactin and haven't really seen anything yet.  In fact, it has made her constipation worse and she is eating less than before this medication.  I can provide her with opportunities to eat, go through all of the techniques we learned speech/feeding therapy and in the end, I cannot force her to eat orally.  Right now she only gets it at night because it can cause fatigue.  We will be increasing it to twice a day by the end of the week.  I am told that can take a few days to increase her appetite so fingers crossed that we start to see some big changes in her appetite and in turn, weight.



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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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