Old School Background

Monday, November 22, 2010

Delta's History - Part 2

Reading all her books before taking them to the library.
I left you last right before Delta's first birthday.  We celebrated Delta's first birthday with friends and family at my parents home.  We had a great time although Delta often seemed overwhelmed by all the attention.  She made a mess with her cake but didn't eat much and enjoyed opening presents.  We had asked that everyone give Delta books to donate to the library rather than gifts as we had an abundance of toys and clothes already and Delta loved and still does love the library.

Shortly after her first birthday we changed pediatricians, not because we didn't like the one we had, but because we wanted one closer to home and because I really didn't like the office staff at our current pediatrician's office.  Within the month we had well baby/well child visits for all four kids.  The new pediatrician wanted to rule out causes for Deltas tininess as she was only 15 pounds.  We ran blood tests and found out she was quite anemic and tested positive for celiac disease, an autoimmune disease that causes damage to the small intestine and malnourishment with all its complications when gluten is ingested.  Alpha failed a vision test, Bravo failed a hearing test and were referred to the opthamologist and audiologist respectively and Charlie we discovered still had an undescended teste and had to see a urologist.  Delta was referred to the gastroenterologist to look into the celiac.  We saw the GI doctor in early October and she told us we needed to do a small intestine biopsy to confirm Delta's celiac disease and it couldn't be done until December.  In the meantime we were to give her lots and lots of gluten to ensure that the test had good results as if there was not enough gluten in her system, the results would be negative whether she had celiac or not.  So we began to give Delta crackers, bread, pancakes, cookies.  Every time she turned around we were offering her more.  In the meantime she became a very cranky, lethargic and antisocial baby.  She started screaming when strangers talked to her at the store.  She was rarely happy and hard to console.  She often laid on our living room floor for hours and just cried, any attempt on my part to console her just made the crying worse.  She started waking every hour or two at night and was simply put miserable.  In mid December the day of her biopsy finally came and we got up extra early to be in San Francisco at 7 a.m.  Delta had a really hard time coming out of the anesthesia but otherwise all went well.  James and I decided to start Delta on a gluten free diet that day, as we didn't have anything to lose by trying it.  Within days Delta's screaming stopped and we saw her smile again.  She was still lethargic however.  When we went back to the GI doctor she said her biopsy was inconclusive.  They couldn't confirm the celiac but they couldn't say she definitely didn't have it.  They recommended we test her again later.  We felt differently.  Untreated celiac disease leads to severe problems, when you have celiac and consume gluten your body cannot absorb the vitamins, minerals and calorie content of the food you eat so you literally begin to starve.  If we waited a year and tested again unrepairable damage could have been done in that time.  If we kept Delta gluten free there would be no way to test later.  We had already seen improvements in Delta's behavior and we were willing to continue with the gluten free diet.  We had absolutely nothing to lose.  Interestingly her iron levels had gotten much worse despite supplementation.  When we went back in January Delta had gained a pound in a month, something that she had never done before in her life and her iron levels were holding steady although still quite low.  I also did a lot of research on celiac and found that biopsies were very unreliable in young children and that almost all kids with positive blood tests will eventually have a positive biopsy if not on a gluten free diet.  One doctor from New Zealand even went so far to say it was child abuse to keep a child with a positive blood test on a gluten containing diet until they had biopsy proven intestinal damage.  This confirmed our conviction to keep Delta gluten free.

Enjoying some family time at Disneyland in April of 2009.
Thank you Disney for your Armed Forces Salute
that made this possible for us.
We chugged along through 2009 with many small but significant events.  Delta's energy and iron levels improved throughout the year.  In February Charlie had surgery to lower his undescended teste.  Alpha and Bravo had seen their vision and hearing specialists, Alpha needed reading glasses and Bravo just needed her ears cleaned out.  In March Echo was born and that same week Delta started speech therapy.  Her first day Echo was less than one week old.  Delta continued to have ups and downs in her growth and her gastrointerologist started her on Pediasure.  In June they switched her to Boost 1.5 for even more calories and too our shock we got a visit from Child Protective Services.  They were there because they were concerned about Delta's weight.  They opened a voluntary (meaning we agreed to it, but I'm not sure what not agreeing would have led to) six month investigation.  The first weeks of this were awful for me.  I really struggled with the thought that someone, somewhere thought I wasn't doing my job as a parent.  In August Delta's GI said if she didn't gain a pound in the next month she would be admitted to the hospital for Failure to Thrive and would most likely be getting a feeding tube.  We started her on periactin an antihistamine, that has a side effect of increasing the appetite.  The first week on periactin was horrible, it also made Delta tired and grouchy and once again she was having screaming fits.  One lasted three hours until she literally passed out on the kitchen floor from exhaustion.  Thankfully these undesired effects only lasted for 4-5 days.  Unfortunately periactin has to be cycled on and off to continue working so we went through this every 4 weeks.

Delta's 2nd birthday was bittersweet as we were all quite certain at her next GI appointment, two weeks later, she would be admitted to the hospital.  She did however graduate from speech therapy the month before.  We celebrated at the park with a Mickey Mouse theme, Delta's favorite.  When we went back to the GI, we were shocked to learn that Delta had not gained one pound but nearly two is just six short weeks.  We sang, we danced, we praised God for a happy and getting healthy little girl, she was thriving and just barely on the growth charts.  In December CPS finally closed their case and decided we were indeed doing all we could for Delta.  Sadly in January the periactin quit working and Delta's weight gain came to a screeching halt. 

I will continue with this year's journey in a post very soon.


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