Cecostomy Tubes R Us

Here we are - two posts in 30 days! It's scandalous, I tell you!  Seriously though, I bet you all thought that I abandoned ship and would revert back to neglecting this blog.  Well. . . ahem, *whispers* I thought about it, but then I figured I'd present you with more random medical stuff, some pics, and the usual Ellie Bear antics.  Yes, antics on steroids because you know, hormones and puberty.

If you've been following The Chronicles of Ellie Bellie Bear for a while, you know that I love to get into all things medical.  I am a former pediatric nurse practitioner turned mama bear to a sassy 13 year-old with Down syndrome and other random, semi-complex, but not serious medical issues that pretty much have nothing to do with her having Ds. Please the disclaimers listed on the side of my blog.  

Now on to the actual point of this post.  There is a point?  In case you cannot tell by the title, Twinkletoes still has her cecostomy and for the most part, it has been a Godsend as her constipation is finally well controlled and she is no longer fighting us with the ante-grade enema administration. She seems to be happier now that she doesn't have weeks'-worth of stool packed into her gut and she is eating better and finally no longer failure to thrive.  It took us some time to find a good regime and we have to tweak it here and there but she is now getting 175cc of SMOG through her tube 3 x week.  SMOG is saline, mineral oil, and glycerin. Sometimes we toss some Milk of Magnesia directly through the tube if she seems to be getting backed up.  The type of enema through a cecostomy is different for everyone -some people only need water, others need saline, etc.  We were hoping that she would only have it for 2 years to allow her colon to snap back to its original size and elasticity but here we are 6 years later and she just cannot seem to go on her own.  The kiddo may be a cecostomy lifer and I am actually okay with that. 

That being said as with any ostomy and with any medical device (Chait Trapdoor), there can be things that go wrong.  The list includes infection, appliance failure, skin breakdown, infection, parastomal hernia, and tube dislodgment.   

**Even with all of the possible complications, I firmly believe that for Ellie, this cecostomy has vastly improved her quality of life and my husband and I do not regret her undergoing this procedure.

Photo Credits:

Left: Cook Medical

Right: Arya, Shruti & Gupta, Nancy & Gupta, Rahul & Aggarwal, Arun. (2016). Constipation and Outcomes of Cecostomy. American Journal of Therapeutics.

Ellie has what is called a Chait Trapdoor.  It is a rectangular-shaped button that sits flush with her abdomen.  The tube itself has a straight piece turning into a "pig tail" or corkscrew.  This tube is typically replaced under fluoroscopy with sedation every 9-12 months.  Ellie spends more time in recovery than the length of the actual procedure.   The usual risks include bleeding, infection, device failure, and gut perforation.  I think she has had it replaced 6 times.  One for each year and then a little extra one from way back in the day when the Princess StinkyPants pulled the tube out. 

Taken a few years ago, this is how the Chait Trapdoor should look.

Chait Trapdoors come in Small, Medium, and Large.  The size is not determined by its diameter, but rather the length.  As a person grows, the colon grows and a longer tube will eventually be needed.  Having the wrong size tube can lead to all sorts of issues.  Unfortunately, I sort of feel like it is Goldilocks and Three Bears in trying to get the size right. 

Photo Credit: Science Direct

*Some of the images in this post may be considered graphic by some.*

WHEN THE TUBE IS TOO LARGE 

For years, the tube was the perfect size sitting flush to her abdomen, but then last year the tube placed was too loose.  I was told it was the Small but the thing was sticking way out from her abdomen.  When she would go to defecate, it would come out to the first coil.  I would say "Ellie fix your tube!" and she'd push it back in.  It wasn't a horribly huge deal because she wears an abdominal binder (see this post) so it was keeping it in place.  Nonetheless, it was a defective tube because it was labeled as a Small in the sterile package but it wasn't actually a small.  With a tube that is too loose, there was stool leakage around the site which lead to skin breakdown.  She has alway had leaking but this was a bit excessive.  Think about a baby in diapers, they are at risk for skin breakdown and yeast infections.  Preventatively, I would use Critic-Aid-AF around the site and keep covered with 4x4 gauze folded into quarters. 

This was Ellie's tube from last year - notice how far it sticks out.  

Even with all the preventative care, such a moist environment would lead to skin breakdown, like what you would see with a diaper rash and eventually infection.  Typically, I would slap on some diaper cream. Well maybe not slap, but very carefully and gentle apply.  I prefer Boudreaux butt paste, but really any diaper cream with zinc works.  If that didn't resolve it, then adding some Lotrimin cream - yes the athlete's foot medicine- twice a day for 2 weeks would also help.  Unfortunately, my skin sensitive little Bearity-Bear would still occasionally need us to whip out the big guns in the form of an oral antibiotic such as Keflex and once she needed oral Diflucan because it was yeast and bacterial.  (Note: Ellie is notorious for getting infections in general, not just at her cecostomy site)

Left: Just after Ellie had her ostomy made, she had a bad reaction to the dressing adhesive

Right: excessive drainage saturated the gauze dressing resulting in skin irritation.  

This is a combination of bacterial and yeast infection.  She required both an oral antibiotic (Keflex) and an antifungal (Diflucan) to clear this up.

WHEN THE TUBE IS TOO SMALL 

Guess what happens when you have a child going through a massive growth spurt?  Any guesses?  Just two months ago, Ellie had her annual tube replacement.  She also packed on a bit of weight since then and all the sudden she developed this soft tissue swelling adjacent to the tube seemingly overnight.  I panicked and was worried about a parastomal hernia (a hernia near an ostomy), which is actually not an uncommon thing.  After a quick trip to the Bowel Clinic where she got to visit with her beloved Dr. R, the hernia was thankfully ruled out.  Yes, the little Turkey still loves her doctors. Ellie's tube is officially too small/short.  It is creating an indentation into her abdomen and causing soft tissue swelling and irritation.  She is starting to have the beginnings of a pressure ulcer where the tube is digging into that swelling.  I am now applying Meriplex, a silicone foam bandage under her tube to protect the skin until Interventional Radiology can fit her in for a new, larger tube.  I am so frustrated because she *just* got this current Chait Trapdoor and now we need to sedate her again!  Of course, my medical frequent flyer kiddo just takes all of this in stride.  As long as she still can get her salad with broccoli (she's an odd duck) once she is home, she is a happy camper.

Soft tissue swelling due to the tube being too small.  You can see how the tube is pushing into her abdomen. She has a Stage 1 pressure ulcer forming right where the tube is rubbing against the swelling.

As usual, it's fun times over in our household!  Fingers crossed that I hear from IR soon.  Our children's health system in Austin has only ONE interventional radiologist now and so the wait may be a while.  

More on Cecostomies:

The pre-surgery debacle and ridiculousness

Surgery - Cecostomy

Cecostomy Post-op Complications

The missing cecostomy tube 

Tips on how to prevent your child from pulling out their g-tube or cecostomy tube.

Colon Manometry 

~~~~~~~~~ 

While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.

Medical Disclaimer

The information in this blog is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web blog is about my parental experiences with Ellie for general information purposes only. All health questions and concerns should be directed at your medical care provider.

Speech Breakthrough, an unexpected IEP, Funky Breathing, and Mama Gut

The exciting and most wonderful new!

I’ve been waiting 8 years to hear my daughter say those 3 little words.  Words I was never sure that I’d hear.  Using her CHAT device, Ellie Bear said “I love Mama”.  There, may have been a few tears.  Okay, a lot of tears, happy tears were shed.

Speech therapist on Ellie quarterly report: we need to meet ASAP for her IEP revision!

A few weeks ago, we received Ellie's quarterly report card.  For those of you who do not have kiddos with special needs, the "grades" are based off of Individualized Education Plan (IEP)'s goals.  You have things like met, continued progress, regression, and N/A.

I was scrolling along beaming with pride because most of her goals were close to being met already.  Then I get to the speech section - no "grades" typed in at all.  Instead, a note to meet with her ASAP.  My heart plummeted as well as the thought  of "if we need to meet ASAP, why didn't she call?".

Panicked, I approached the meeting room with the teacher and SLP with a wicked fast heart rate and mild tremors.  I apparently freaked out for nothing.  We have a new SLP this year and her goals were written by the old SLP at the end of last year.  The new SLP, Mrs. A ,said that these goals are not really appropriate - not that she couldn't maybe meet them, but not the types of things they want to her to accomplish in the Functional Communication Classroom. 

Ellie's teacher wants her annual ARD (the big IEP meeting with all teachers, therapists, vice principal, etc) because her goals are also inappropriate and pretty much met.  She based Ellie's goals off of what her FAC teacher said she could do last year.  For instance, he couldn't tell her exactly how many sight words Ellie knew and said "just a few" or something along those lines.  The FCC teacher, Ms. L, thought a good goal would be 27 sight words.  Well, when she started working with Ellie, she discovered that Ellie already knew over 500 words!  She calculated the new words she has learned since the beginning of the school year and it is already over the 27.  With the introduction of the speech device this year, the teacher is finally able to assess what Ellie truly knows and that may have been why FAC couldn't measure her true progress.  Hence why we need new goals. 

Showing Mama Bear around her classroom

 What is up with these oxygen saturations? and always trust Mama Gut

Two weeks.  That’s how long the Bear has been ill.  I was at Ellie’s school for the Thanksgiving lunch and she was coughing.  Nothing that I normally wouldn’t think too much of, but mama gut told me to take her to the nurse to get a pulse ox reading (this checks the amount of oxygen in the blood.  Normal is 97-100%).  She was hanging out at 92%.  Her inhaler helped her a bit, but she kept returning to the low 90s.  I took her to CCC the next day.  Totally anticlimactic.  I was told she might have mucus plugs in her lungs and is coughing them up. Therefore, coughing is good.  I wasn’t to give her the inhaler unless she was either 1. under 88% oxygen saturations or 2. wheezing.  She started getting better, but then spiked a few fevers off and on during Thanksgiving week.  The day before Thanksgiving, she was a snot machine, which she didn’t have before, but not worrisome.

Then, yesterday morning, her cough was bad and I checked her saturations - 88%.  So we used the inhaler.  I had her checked out at school and same thing.  The inhaler helped a bit.  I was finally called to come pick her up because she was trying to nap on the classroom floor (of course she gets home and is miss energy).  She looked horrible.  Today I took her to CCC and I noticed her lips were turning blue.  She was at 86%, but came up to 91% with the inhaler.  Her lungs had crackles (a sign of fluid in the lungs like with pneumonia).  We are to give her inhaler every 4 hours and start her on Omnicef.  If no significant improvement after 48 hours, she’ll be started on a course of steroids.  If she either 1. can’t keep her sats above 88% with the inhaler or 2. has a >101.5 fever Friday or thereafter, she needs to be seen again.  I think she’ll be fine. 

She's pretty excited because she put her PJs on all by herself
Another milestone today!!!

Is it respiratory or reflux?

Reflex vs. Respiratory - Miss Pukes-A-Lot

Ellie has a history of esophageogastroduodenitis.  That is a fancy way of saying reflux and inflammation of the stomach and upper small intestine.  See, not that exciting, but it does mean the Bear gets to take reflux meds.  Last month, Chicka Boom was puking up her bedtime meds 2-3 x a week.  Usually about 1 hour after dinner and twice it wasn't related to her meds.  Once occurred, on the table at Chuy's.  Its cough, cough, cough, cough, puke.  After 3 nights in a row of not getting her meds, I called CCC.  Of course they don't get back with me. I call GI who calls the CCC for me.  Immediate call back.  My thought is that she needs a reflux med adjustment because back in June, we did a trial of the medication and she randomly vomited and it resolved after restarting the meds.  The docs agreed with me and had the bright idea to put her on cyproheptadine aka Periactin.

Periactin is an interesting medication.  It is a prescription allergy medication (antihistamine similar to Zyrtec)m, but is also used as an appetite stimulant, migraine prevention, and treatment of delayed gastric emptying.  Ellie was on this a few years ago as an appetite stimulant.  Uh huh.  The kid has packed on the weight these past few months.  She doesn't really need to gain anymore.  Anyway, fun fact about antihistamines: they help with nausea.  Histamine is what signals the release of gastric acid in the stomach to break down food.  If you block the release of histamine, there is less gastric acid to reflux back into your esophagus.  It seems to be helping.

I think that is all for now!  I am looking forward to hearing more of those "I love Mamas" and a future visit from my parents and my brother, Matt.

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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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Sleepless in Austin: The Sleep Clinic Appointment

This post was meant to be published at the end of last week, only it disappeared into the blogosphere so I am starting over from scratch.  Actually, it was a post about the DIY oak bench, but you all were really due for another sleep post.  

I have no idea where she comes up with these fashion ideas
As for the bright blue penguin, yeah, I have no explanation for that either. 

I really feel as though this has been going on since the beginning for time, but really just since this past August.  You know, only FIVE months!  So what do you do when you cannot catch enough shut-eye?  Post a ridiculous amount of coffee memes on Facebook in hopes that you will absorb copious amounts of caffeine by osmosis through the computer screen.  Obviously.

You know that feeling you get when you feel like your head is full of sticky marshmallowy fluff and every bone in your body feels like lead?  That feeling of if you even try to function you will fall flat on your face and cry out “I cannot go on like this!” from that deep pit of despair?  Yes?  Yes?!  

Thursday was my pit of despair.  Who am I kidding? So was Friday.  Ellie’s early wakings finally  caught up with the two of us.  I am so fatigued that I cannot even remember where I left off last!  

Ellie and I stayed up "late" on New Year's Eve

Clonidine.  That’s right.  After a week of not hearing from Ellie’s neurologist, I got a text from CVS stating “ELLIE your prescription is ready for pick up”.  This is how I learned that we were going to start using clonidine to help Bear sleep (and stop her Tenex).  It was nearly a full week after I picked up the prescription that the neurologist’s nurse called to tell me that we need to switch Ellie to clonidine.  My confidence in the neurology department was minimal at best, but well, there is really no need for me to finish this sentence.

The Neurontin did not help at all and in fact, it made her have great difficulty falling asleep.  Once she was off of that, she returned to falling asleep relatively easily on most nights.  At first, we thought that the clonidine was helping somewhat. . . until it wasn’t.  Maybe it was the flu that gave us false hope that Bear’s days of early rising were behind us because once she was back in tip top shape, 12:30am, 2:00am, or if we are really lucky, 3:30am were her wake up times.  

With the amount of physical activity this child get, you would think she would sleep great.

I suppose I should be clear.  This does not happen every night, but rather 3-4 times a week with no discernible pattern.  I say this with confidence since I started a sleep log back in November. When Ellie wakes up at 12:30am, she does not fall back asleep again until 7:00PM.  You know, at night.  As in she is up for way too many hours.  It does not matter what time we put her to bed and no, she does not nap. I want to nap. Badly.

The new part: Ellie is now missing school because she is so emotional, agitated, and tired that I cannot possibly send her to the classroom.  I know that I touched upon the affect lack of sleep has on her behavior.  Sort of like her ADHD on steroids.  It is almost as though I didn't give her Adderall.  She is not doing well in school.  My Ellie, she is capable of so much and we get glimpses of that on days when she has a sufficient amount of sleeps.  When we can see her awesome potential.  Yet, the other 50% of the time, she is trapped in a vicious cycle of oral seeking, jumping, impulsivity, inattentiveness, and grabbiness.  She cannot function at school and on those days, she is actually removed from the typical pre-k classroom.  As we begin to plan for her Kindergarten placement, we are having to take into account both sides of Ellie: rested Ellie and sleep-deprived Ellie.  The sleep-deprived Ellie is holding her back.

Yes, she is always this perky in the morning.

This past Wednesday was THE Sleep Appointment!!!!  An entire clinic dedicated to all matters of SLEEP!  After 2 months of anxiously waiting, Ellie had her consultation with a pediatric sleep specialist. As you can imagine, a sleep study has been ordered.  The surprising part?  She will have her study THIS WEEK!  In all honestly, I thought that we would have to wait a few months.

I miss this.  Ellie used to be such a good sleeper.

There are a few theories here:

1. Kids with neuro-psychiatric disorders such as ADHD, autism, and SPD have a higher rate of Restless Leg Syndrome and Periodic Limb Movement.

2. Kids with Down syndrome are at a higher risk for obstructive sleep apnea.  This risk is still high even if the tonsils and adenoid have been removed.  If Ellie needs a CPAP, we are in big trouble.

3. When this first started, Ellie was getting over a sinus infection.  At first, I wasn't too excited because sinus infections can affect sleep.  A few weeks later, I didn't think too much because school just started.  Yet, here we are 5 months later and it all goes back to that sinus infection.  I am not sure how it all works, but there is the possibility the virus triggered something. 

The original "sleepless in austin" post.

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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.

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

The Bear is Back

After nearly two months of strange random fevers followed by a round of abnormal fatigue, the Ellie Bellie Bear is back in action.  Full of Bear-i-tude.  Full of energy.  Full of life.  Up to her usual sassy antics.

Seriously, Bear?  The green chalk?
This is what happens when Ellie doesn't sport her totally groovy chewelry.

Let's do the happy dance and make sure that the first aid kit is fully stocked.



The act of scheduling an appointment with Infectious Disease seemed to have cured Ellie of her random fevers in that she has not had febrile episode since the end of June.  However, one day after her visit with the folks in white coats toting big needles, Ellie started to sleep.  A lot.  Those of you who know me, frequently hear me lament "it all depends on if Bear naps".  Not when, but IF. As in my precocious little 3.75 year-old Bearity Bear was attempting to drop her nap.

In this photo: Ellie is modeling the "bendy pretzel" sleep position

I watched my typically hyperactive spider monkey lose energy for no apparent reason.  Her naps ballooned into 3+ sleep marathons with the occasional 2nd nap.  For the first time ever, my daughter "slept in" until 7am (as opposed to the usual 5:30/6:00am) . . . and went to bed earlier than usual.


At first, I did what any mother would do--I rejoiced!  And finally caught up on much-needed sleep.  And started contemplating her new wardrobe because surely this child was growing several inches with that much sleeping.


Until the sleeping cycles happened every day.  For 2.5 weeks.  My daughter has been in my life for nearly 4 years and I have never ever witnessed a growth spurt like this.  Not to mention she didn't grow during those 2.5 weeks.

Sleeping 12 hours at night.  Going down for a 3 hour nap sometime between 10:30am and noon.  Falling asleep in the car.  Wanting to be carried from the car to the curb--and I am not talking Boneless Toddler Syndrome.  I am talking exhausted-please-carry-me-or-I-will-take-a-nap on the asphalt needing to be carried.

Perhaps the most alarming: no climbing.

Yes, you read that correctly, no. climbing.  Ellie Bear seemed normal if she was watching TV or sitting quietly (yeah, I said quietly), but anything that required physical exertion was too much for her.  I would take Bear to a play scape and she would just sit on the ground with her baby dolls.  If she mustered the energy to climb, she would then lay down for a minute before going down the slide.

Preschool and Therapy both reported that she seemed really draggy and would "lie around".

Top Left: attempting to take a nap on the floor of Quiznos.  In front of the door  because that is the safest place to just nod off.

Top Right: attempting to take a nap at Speech Therapy.  This is after she took a 3 hour nap and at the beginning of therapy.  We were still in the waiting room.

Bottom Left: The pre-zonked out car nap

Bottom Right: attempting to take a nap at Target. You know, the place that Ellie usually screams at and wants to run like a wild-banshee-child at.  The handle bar of the cart = pillow

What. Happened. To. My. Little. Girl????



You think I would have learned from the last Googling incident.  Child + Fatigue = scary things

Physical exam, normal.  No other symptoms.  No fever.  Normal appetite.  Just exhausted.


Clearly it was the thyroid or a funky virus like mono but without the swollen lymph nodes.

After our pediatrician brushed me off, I went all Mama Bear and contacted her Developmental Pediatrician who nearly had a heart attack when I described what was going on with Ellie.
Here is what we found out with the labs she ordered:

This is very anticlimactic.

Normal thyroid function.
Normal CBC--no virus, no anemia, or the big L
Normal electrolytes
Normal blood sugar
No Lead Poisoning.

Yes!


Yesterday, Ellie woke up at 7am and lasted until 7:45pm.  She took ONE nap.  That nap lasted only 2 hours and 20 minutes.  She asked to play.  She climbed up and went down the slide twice without taking a little snooze in-between.  She walked from the car to the curb and then back to the car without needing to be carried.  She was not tired at preschool.  She was My Ellie!!!!!


Now, I need to go wake The Bear so we can head to speech therapy.  I expect that she will be 4 inches taller when I wake her!

*For all you medical folds or immuno-compromised people out there: could her low IgG subclass deficiency make her sleep 15+ hours a day?

Right: the correct way to eat honeydew melon.

Health Update and Photos

I do not have too much to report with regards to my previous post on Fever of Unknown Origin except to say that if you want to "cure" something that has been going on a long while, just walk into the doctor's office.  Ellie has not experienced her strange, random fevers since her visit with Infectious Disease [ID] last week.  This is a record since her fevers had a 3-6 day cycle.  She has, however, been extremely tired, agitated, and cranky.  She gives new meaning to the phrases "terrific 3's" and "cranky pants".  I believe that she is either experiencing a massive growth spurt, again, or is trying to fight something off.  She is unbelievably tired and is not like my little Bear-Bear at all.  This child was Bear at 10:20am (yes, AM as in morning) today:

Ellie has been laying around.  She plays, but will have blankie in her mouth and laying her head down on a chair, table, grocery cart handle, bench, etc.  On Friday I had to end our play group early because she thought that 11:45am was an appropriate naptime. I am also having to wake her up from her naps, after 3 hours. This is very uncharacteristic of my hyperactive, climbing possessed Bear.  All of that being said, it is not inconceivable to think that perhaps my little darling has been hosting some wild, middle of the night parties with her babies and stuffed puppy.

Friday morning I contacted ID to see if her blood results came in.  I received a return call from the ID nurse.  I consider that a good sign.  Whenever a doctor calls to speak with you, that is a bad sign.  A nurse is a good sign. . . usually. The nurse informed me that only some of her results were back.  Her CBC was normal and her platelet levels returned to their normal levels.  This again rule-out the big L [Leukemia]!  Insert happy dance and a whoot-whoot. Her immunoglobulin G [IgG]  levels are low in two of the subclasses.  There are 4 subclasses.  She has low levels of IgG-class 2 and IgG-class 4.  This is not too terribly exciting.  I will go into this more on a later post, but it means that the Bear has a cruddy immune system and has trouble fighting off infections against bugs that she has already been exposed to.  Many of these bugs cause. . . are you ready. . . ear infections, sinus infections, and pneumonia.  Huh?  I guess that would explain the recurrent sinus/adenoid infection from January - April.

Immunoglobulins are essentially antibodies.  Antibodies fight bacteria and viruses and whatnot.  What all of this means for Ellie and what treatment is needed, if any will be discussed at her next ID visit at the end of July.  Again, this is a good thing.  If things were bad, an office visit would occur at a much earlier date.

Currently, we are awaiting the results of her tetanus and strep pneumonia antibody levels.  Ellie has received vaccinations for both of these bacterial diseases.  If her immune system is behaving wonky, she may not have developed enough antibodies to protect her from these nasty bugs.  If that is the case, she could still get a tetanus infection.  Goody.  I believe that we are also waiting for a few more tests to  be completed and I will keep you all updated once I know more.  If you are absolutely dying to learn more about Immunoglobulin G Subclass Deficiency, you can click on the link

Fever of Unknown Origin

In nursing school, there was a saying "if you hear hoof beats, look for horses and not zebras".  This means look for the common illnesses such as ear infections, strep, urinary tract infections, pneumonia, etc. before considering more rare disorders/infections. The thing is, if you are an overly anxious mother who happens to work in medicine, you only hear zebras.  

Photo: www.livescience.com

Bear has missed a fair amount of school and therapies and play dates due to random, recurrent fevers.  These fevers are not all that exciting.  They are low grade--ranging from 100.5-101.2.  They typically last less than 24 hours and present mostly in the mornings within a few hours upon waking.  Her only symptoms include decreased appetite and agitation.  There is no pattern to these fevers.  They occur anywhere from 2.5-7 days apart.  

At first, I wasn't tracking them.  Then I noticed that there seems to be an inordinate number of fevers in a short period of time.  I thought perhaps Ellie just ran hot.  Maybe 100.5 is her normal temperature.  Twice daily tracking proved otherwise.  I thought perhaps it was the thermometer so I bought another one just to be sure.  Two thermometers cannot be wrong.  I was not paranoid. For a while I just chalked it up to a 24 hour virus.

someone forgot to tell her that she is supposed to be "sick"

This Mama Bear doesn't tend to rush The Chunky Chicken to the doctor at the first sign of fever.  I like to wait.  And wait.  And wait.  Yes, I avoid the pedi unless it is absolutely necessary.  I do not like doctor's offices (yeah, I know.  I went into the wrong field).  In the past 31 days, Ellie has experienced 7 different febrile episodes.  Seven.  Only one of them lasted more than 24 hours--it lasted the 3 days.  That was when I bucked up and took her to the PCP because she might be, you know, ill.  Ellie sauntered into the office with two baby dolls and her plastic stethoscope.  Both baby and Ellie's physical exam was baseline.  As in normal.  As in they couldn't find anything 'wrong' with her. They drew a CBC and it looked okay.  We were told to follow up with Infectious Disease [ID] if these fevers continued for 2 more weeks.  The Bear is and enigma.  Yay!

What do you do when the hoof beats are not horses?

You start to look for zebras.



Seeing as our pedi was at a total loss, I went to the best medical source possible--Facebook!  I got some great differential diagnoses and started to monitor Ellie's fevers more closely.  I got the idea to call her old allergist/immunologist who also referred us to ID.

When Ellie's fever return after 56 hours, I lost it.  I was actually stuck in the Austin airport for several and I mean several hours while trying to get to a wedding in St. Louis.  I had my iPad and a speedy Internet connection.  With too much time on my hands near gates 13-17, I consulted the best medical manual around--Google.   

In case anyone is wondering, if you type in "frequent fever Down syndrome" you get:

LEUKEMIA

When clearly my daughter really has malaria or nephrotic diabetes insipidus or PFAPA.

Which brings me to this important life lesson: avoid Googling!!!!!


Upon returning to Austin and reuniting with the my baby girl, I immediately set up an appointment with Infectious Disease. I was certain I would have to wait a few months but they worked us in for the next day. . . today.  I felt a bit ridiculous walking into the clinic today--yeah, my daughter has fevers but she looks great and acts great and seems perfectly healthy!  

Of course, this is the kid who once had coxsackie, a staph infection, and sinusitis all a the same time and was excitedly signing "play".  She is also the kiddo who got pneumonia while on an antibiotic. This kid rarely acts sick. 

Our visit went alot like this:

Dr: Does she have a cough or runny nose?

me: No 

Dr: Does she have any drainage from her ear tubes?

me: No

Dr: Does she have any swollen joints?

me: No

Dr: Any diarrhea or vomiting?

me: No

Dr:  any throat infections, problems breathing, runny nose, stuffy nose, foul smelling urine, swollen lymph nodes, stomach pain, throat pain, head pain, wounds that don't heal, or rashes, etc. etc. etc?

me: no, no, no, no, no, uh she is nonverbal and cannot tell me what, if anything hurts

Dr: Does she have any bruises or petechiae?

me: She always has some petechiae.  It really isn't impressive.  More like pressure petechiae, see? [I show the Doc her waist line and shoulders--areas where her waist band and seat-belt left petechiae]

Mild petechiae from laying on ear, tourniquet during blood draw, and crying/screaming

The physical exam goes like this:  normal, normal, normal, normal, normal, normal, hyperactive

This is all GOOD!!!!

Of course we went to Quizno's after her blood draw

The doctor leaves the room and comes back in with an list of labs to run--CBC with manual review, ESR, C-reactive Protean, all sorts of immunoglobin levels, strep pneumonia serotypes, uric acid, lactic acid, metabolic panel.  Essentially she is checking for inflammation and her antibodies.   The doctor is confident that based off of Ellie's physical exam and the CBC performed at the pedi's office last week that her fevers are not the result of something hematologic.  As in NOT a leukemia.  Whew!!!!  Happy dance.  She does think that these fevers could be immune-related. Oh goody [sarcasm].  It does make sense. . . I sort of forgot that Ellie had SNOT from January to April thanks to a monstrous sinus infection that just would not quit--hence the adenoidectomy.



Five vials of blood later, I have decided that my daughter's awesome physical exam and lack of symptoms point her to just being an "odd duck".  

A FB friend once told me that "every kid seems to have 'thing'".  Maybe these fevers are Ellie's "thing". 

I am grateful that she looks great.  I am.  Believe me.  Yet, I am peeing my pants over here with anxiety.