Wednesday, July 15, 2015

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.


Monday, July 6, 2015

Quick Updates All Around: Travel, Lice, School, Friendship, and the passing of Amelie

I started this post about lice.  Yes, LICE.  As in Ellie had lice a few weeks ago.  That post isn't completed. . . yet. . .  but I decided to write about more mundane, and less disgusting things today.  Such as, what we have been up to the past few months!

In May, we had Ellie's IEP meeting.  You can learn a little bit more about it here.

It was also my darling, Tabitha's birthday.  My forever daughter in Russia turned 5 years-old and may or may not have aged out of the baby orphanage and transferred to an institution.  Given the adoption ban, I no longer receive updates on this sweet girl.  If any of you happen to know how she is doing, please contact me.

Andrew had a huge conference in Vancouver, B.C towards the end of May and I got to join him halfway through!  My mom flew down to care for Ellie so that Drew and I could have a mini getaway.  This is something we haven't done since Ellie was a baby and it was the longest we were away from her.  We had a lovely time eating out, checking about the water, and meeting up with my friend Lisa.  We went to the Capolano Suspension Bridge which is a huge deal.  I am petrified of heights.  I had this idea that I would swoon from the fear, crack my head open and then fall to my death.  Thankfully, that did not happen.

While we were gone, Austin and the surround areas were hit with record rainfall.  There was massive flooding just to the south of us.  At one point I-35 was washed over.  We had friends lose everything.  People were missing.  We were fortunate that the only damage we had was to our garage.

Bear graduated out of PPCD [preschool preparedness for children with disabilities].  I would love to tell you that she had a big graduation complete with cap and gown, but there was really nothing to mark the day.  She does have a few days of summer school that last about 2 hours/day for 4 days/week for 5 weeks out of the summer.  During her down time, we are having a grand old time with friends.

Girl's night with Sheryl & Rita at Cru Wine Bar

The not so fun part is that all of these doctor's visits seem to have snuck up on us.  My personal favorite is the dentist.  Ellie is usually such  little toot.  Screaming, thrashing, biting - and that is just a daily thing at home with me brushing her teeth.  So imagine my surprise when Bear cooperated for a dental cleaning - tooth brushing, fluoride treatment, flossing!!!

Then of course there was the lice incident, but more on that later.  Let's just say it was horrendous nit combing her hair and taking care of all of her hair accessories - hats, headbands, bows, horse helmet.  

It was very fortunate that the lice infestation was caught the week before our much anticipated trip to St. Louis to visit my parents.  Could you imagine bringing lice to another person's house?!  Ellie and I traveled to St. Louis sans Andrew.  Andrew had just returned from a business trip and needed to put in a bunch of hours at work and he also had great plans to work on the laundry room (this would be the laundry room that was gutted back in late December and the one that I blogged about in March).  

The Chunky Chicken was a rock star on the plane and behaved really well when we went to places like Kaldi's Coffee and this restaurant out in Washington, Missouri to visit my Uncle Robert and Aunt Sue.  Our visit was quick and we didn't get to see many people outside of family.  Ellie tried a ton of new foods - hamburger, deli chicken, alpine cheddar, gluten-free cookie.  I noticed that she did this the last time we went out of town back in March to visit my best friend.  Maybe the change of environment and being around new people make her a bit more adventurous?  We also managed to wear her out because she was going to bed between 6:00pm-7:00pm!

I ended up going with the white and the black mug from
The Shack, but I think I should have sprung for the red one too!

Unfortunately, a huge shadow was cast upon this trip.   My beloved 7 year-old tortoiseshell rescue kitty was compassionately put down.  To be so far away and not get to say good-bye was and has been rough.  The return home was extremely upsetting.  My spunky kitty didn't run to the door to great me.  She will never burst through the dog door and "chirp" at us.  She will never sleep on top of me again.  

Amelie was our honeymoon kitty.  The day we got back from our honeymoon, Andrew and I went to PetsMart to pick up dog food for Rodeo (?-2009) and kitty litter for Tama.  I walked out the door with Amelie in tow.  My little rescue kitten had a whole lot of spunk and personality.  Just after Ellie and I left for St. Louis, Andrew noticed that our Ame wasn't eating and seemed less energetic.  She used to sit on top of the fridge instead was laying around on the floor or on Andrew.

She arrived to the vet dehydrated, constipated, with a temperature of 95 (normal cat temp 100.5-102.5).  It was assumed that she had some sort of infection that entered her blood.  After a bunch of labs, it turns out that she was not septic, but was in kidney failure, most likely due to congenital polycystic kidney disease.  After intensive treatment, it because apparent that Amelie's body was shutting down (she was 91 degrees by the end) and we opted to compassionately ease her suffering.  It was really hard for Andrew to see her like that, but he was with her in the end when she gave him one last "meow".

I miss her so much, but I know that she is now playing with our dog Rodeo and curling herself up in his tail like she used to do back when she was a tiny kitten.


A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...