Organizing Ellie's Medical Care

It has been an eventful past 2 weeks.  Well, not too much so.  We’ve just had 5 doctor appointments.  Most were anticlimatic, such as ENT where we have graduated to yearly appointments.  Can you say “woooohoooo!?  

First up was ophthalmology.  The Bear still isn’t wearing her glasses.  We’ve been doing atropine drops into her good eye to dilate the pupil thus making seeing out of that eye blurry.  In theory,  by having blurred vision in both eyes, she should more likely to wear her glasses.  Except that didn’t happen.  We discussed patching her good eye as we want to force her bad eye to stop turning in.  I gave the doc my “you are delusional” look because can you see Ellie keeping that on?  So we are now doing atropine twice a month which will act similar as patching.  The thing with nystagmus (turning in of the eye), if left untreated, that eye eventually goes blind.  Obviously we do not want that to happen.

If only she would wear them for more than 2 minutes

Next up was GI. We graduated to 6 month follow - ups!  So let’s do another woohooo! Her constipation seems to be well controlled - I hope I didn’t just jinx it!  She is dealing with some random vomiting issues.  Since June, she throws up about 1/3 of the time with the enemas.  We figured this is because we administer a high volume of saline into her colon and it pushes on her stomach.  Except, this is new.  We’ve had 3 other instances where she throws up once randomly - not associated with enemas, eating or drinking.  We are debating on whether or not they were stomach bugs or reflux.  To be on the safe side, we restarted her reflux meds.

As it turns out, we did have to go back to Infectious Disease.  When they called me while on vacation, saying her labs were mostly normal for her, they only had some of her results.  Her B cell lymphocytes were still very low, but she had a moderate immune response to her vaccine.  ID isn’t worried because she has never had sepsis or required IV antibiotics and she did great with the vaccine.  Yes, her lymphocytes are still low, but her immune system is functioning okay.  

Waiting for audiology at ENT

Friday, we had an appointment with our new pediatrician at the Comprehensive Care Clinic.  We had been waiting months to get in.  Dr. B, coincidentally, was Ellie’s very first GI specialist and she has a son with Ds. The appt was nearly 3 hours long and did great until the very end when the phlebotomist used a band-aid instead of purple coban.  One of the goals of CCC is to minimize specialists visits and try to do most “visits” over the phone.  We have our assigned nurse’s cell # and any time we need to talk to a specialist, Dr. B calls them.  She is going to take over most of her care for pulmonary, ID, ENT and possibly neurology.  We are up in the air about urology since Ellie gets bi-yearly renal ultrasounds and CCC doesn’t have that capability in their office.  Her eye issues and GI issues will continued to be predominantly monitored by her specialists.  

Don't you always take baths with your swimsuit?

We learned yesterday that Ellie has hypothyroidism.  It would explain why she has been sleeping 13 hours and asking for naps all summer.  Hypothyroidism is very common in Down syndrome.  It is why we monitor via yearly blood work.  The signs of hypothyroidism in a child are fatigue, weight loss (in adults it is weight gain), constipation, and cognitive impairment.  Because cognitive delay and mild constipation are common in Ds, it is difficult to differentiate between Ds and symptoms of hypothyroidism.  Thankfully, we do not need to add endocrinology to list of docs we see as the CCC will handle it.

According to the pharmacist, synthroid (synthetic thyroid hormone) is supposed to be taken with water only and not within 4 hours of other medications.  Seeing as Ellie takes meds 4 x day, she would have to get up at 2:30am to take the synthroid.  The pharmacist agreed that it isn’t practical so she will take it with her morning medications and routine lab work will monitor her thyroid levels.

Now the good news is that we have NO doctors’ appts for the months of September and November so I will hopefully get to blog about other exciting things besides medical stuff.

She was so excited to ride the bus and go back to school.

Ellie started 2nd grade yesterday and she had a blast!  Here’s to hoping for a good, successful school year!

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