Thursday, August 27, 2015

An Overall Update - failure to thrive, kidneys, GI issues, sleep apnea

I cannot believe that it has been over a month since I last updated the blog.  Things have been chaotic over here so I am going to just pump out a big fat update.  Normally, I like to add in a lot of cute pics, medical photos, and lots of resources, but I will skip that for now.  Forgive me?

Obstructive Sleep Apnea:
Operation CPAP has been a massive fail.  Am I shocked?  Nope!  We had a sleep clinic appointment back in July to discuss options.  I consulted with a sleep tech who works specifically with getting children to wear their  CPAP face masks.  We made sure that the mask was adjusted properly, but I pretty much had to restrain Ellie the entire time.  The doc witnessed the huge fit that Ellie pitched when I attempted to bribe her to wear place the mask over her nose.  I considered it a HUGE success that she actually wore it for an entire minute in clinic.  The thing is, Ellie wore it more when we first started this CPAP desensitization and she has become progressively more frisky and clever at yanking it off.  Did I mention that this is just the mask?  As in the mask isn't hooked up to the machine and the machine turned on?  Oh I didn't mention that?  In speech therapy a month ago, we were able to get her fully hooked up with the machine on for 10 seconds - with us holding her hands down and her crying.

At this point, we are waiting for her to undergo something called a Cine MRI while under sedation.  This MRI will look at the anatomy of her upper airway and how it works while she is sleeping.  We will use these images to identify what structures are causing the most obstruction.  From there, we will determine what type of surgery will best alleviate her sleep apnea.  Sounds like fun!

My "baby" started Kindergarten!

Weight and Failure to Thrive:
When we last left off, we were starting Ellie on an appetite stimulant.  Can I just say that on day 5, things started to happen.  I have never ever seen a child each so much!  Ellie's starts eating dinner at 4:30pm and will continue to eat until 7pm.  She is back to eating breakfast, now lunch, and occasionally a snack. Her current breakfast is what she used to consume in an entire day.  I do not know where she is putting it all.  Like a bottomless pit.  Human garbage disposal.

Because of her hunger, we are now able to get her to try new foods.  She has always been a picky eater and that includes freaking out over different foods intermingling with each other - like having icing on top of her cake.  Or pretty much having something other than Nutella touching bread products.  So I about passed out from shock when she stole my healthy spaghetti bolognese, and just chowed down, I was shocked.  Different foods of different textures all touching!

This past Monday we went in for her well child check. Even though she has been eating like a teenage boy going through a growth spurt of the past 6 weeks, she has not gained any weight.  Not even an ounce and her height has stayed the same.  I was shocked.  She is eating so much and I thought that her face looked much fuller.  So she still has not gained back all the weight she lost back 15 months ago, BUT she isn't losing any weight so that is something.  I am still placing the blame at whatever is going on with her GI tract.

GI Issues:
When will it ever end!?  The basic update is: we still can't get a handle on it.  She is still requiring lots of intervention which also include enemas.  I am frustrated.  Andrew is frustrated.  The pediatrician is frustrated.  In fact, her pediatrician is so frustrated that she called Ellie's gastroenterologist herself.  At every visit, for the past 15 months, her GI doc has said "if she doesn't gain weight, then we will do an upper GI to officially rule out celiac".  We have had 4 visits since then and quite a few phone calls - each time Ellie has not gained weight and each time he has delayed the upper GI.  After speaking with the pedi on Monday, he has decided to rule out tethered cord (abnormal attachment of the distal portion of the spinal cord to surrounding tissues ordering) by ordering a MRI of the spine.  Unfortunately, due to scheduling issues at the imaging center, they are not able to do the spinal MRI the same day as her Cine MRI.  I seriously doubt she has a tethered cord as she does not exhibit any other symptoms such as dimples or hair patches on her lower back, weakness of her legs, or obvious changes in her gate, but it is important to rule these things out.  She does have signs of urinary retention (more on that later) and of course the GI issues.

Now this all brings me to my next topic:

Decreased Urination:
Ellie hasn't been what one would call a "frequent" urinator in the past couple years.  She has been able hold her urine for 4- 6 hours for ~ 2 years. Then the time between voids grew farther apart.  Last year, for instance, she would pee 2-3 x during the day and then over night.  When she did urinate, it was huge.  She as having to wear nighttime pull-ups during the day because of her adult-sized bladder.  The past 3 weeks, however, things have changed.  She has been waking up dry.  I thought this was a huge potty training milestone.  Basically, she is now peeing once very 18-24 hours.  She may pee at 4pm and then not pee again until 12 noon the following day.  When she does pee, it is a fair amount.  As in it fills up a diaper.  She will be 6 years-old in a few weeks.  She drinks plenty of fluid for a 30 lb kiddo.  She should be peeing much more.  More in terms of both frequency and in volume.

She is signing "school" and "dance".  Someone was excited for her first day!

I brought this issue up with Ellie's pediatrician.  Ellie isn't potty trained so I do not believe this is an issues of 1. her going and not telling us or 2. holding her urine on purpose.  It is most likely some urinary retention caused by either one of her medications or by constipation rather than a kidney issues.  However, it is important to assess her renal function.  So in addition to Ellie's annual CBC and thyroid panel, we are adding in lab work that will look at her kidney function - think BUN and Creatinine.  A renal and bladder ultrasound has also been ordered.  I know from a previous abdominal ultrasound back when Ellie had her weird clay-colored stools that her kidneys are small for her age (but not necessarily small for someone her size).  The good news is that this ultrasound can be performed the same day as her Cine MRI.

So how's that for an update?  I hope to report back more late next week with regards to the cine MRI and ultrasound.  Until then, fingers crossed that we get her spine MRI on the schedule soon!

More on Ellie's GI Issues:
Sitzmarker Study and Delayed Colonic Transit.
Stomach Issues, Surgery, Anorectal Manometry

More on Ellie's Sleep Issues:
Sleepless in Austin
Polysomnography, Sleep Study Results, Obstructive Sleep Apnea and other things
CPAP for Obstructive Sleep Apnea
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A mask for kids with Down syndrome

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