Saturday, February 9, 2013

Pumpkins story before gastroenterology came to play

Our little Pumpkin was born the second and smallest of our (eventual) brood of 4 chickadees.  She was 8 lbs 6 oz and 22 1/2 inches long.  She was born with dark hair, but each time we washed it some of the darkness went out of it until she had a beautiful bright auburn hair.  It has since lightened up to a strawberry blonde, but will always be red to me.

Pumpkin had an issue with spitting up since birth.  She'd drink my white breast milk and it would come back up - orange.  She soon dropped down on the growth chart a bit to the 50th percentile for height and 25th percentile for weight.  Around the age of 1 she contracted the Rotavirus.  This gave her the worst diarrhea that our pediatrician at the time had ever seen.  She'd drink purple pedialyte that came out the other end so fast that it was still purple.  She was in the hospital for 5 days with an IV stuck in her little foot and went through 40 diapers in a day.  Her little fair bottom looked like hamburger meat from the soreness of the diarrhea.

I can't remember at what age she started having chronic diarrhea, maybe it was after the rotavirus.  Around 2 years of age she was diagnosed as failure to thrive because her weight had dropped to the 5th percentile and her height to the 25th percentile.  She had a big workup with lots of labs, a sweat test, saw a pediatric gastroenterologist, a pediatric urologist (for labial adhesions), and a pediatric endocrinologist.  In the end they diagnosed her as just being a small child with big parents.  They essentially told us nothing was wrong with her - that we needed to find a way to get more calories in her working with a nutritionist.  We tried that and tried all sorts of things.  She just stayed there on her low end of the scale (5th %) for weight and at the 25th percentile for height, hardly able to eat, frequent stomach aches, regular bouts of diarrhea, etc.

At the age of 4 Pumpkin started having seizures about a month after her 4 year old shots.  They were diagnosed as temporal lobe seizures and she was put on medications for this.  She took medicine called Trileptal for 1.5 years and the seizures seemed to be gone, so they weaned her off of it.  When she was 6 we went to Guatemala for 3 months.  She started feeling funny feelings in her arms that reminded her of how she felt with her seizures, and so back on the medicine she went. 

Before we went to Guatemala we had found a diet called the Feingold diet that helped with her seizures, hyperactivity and behavior issues (she wasn't ADHD, she was just challenging).  Cutting out the artificial colors, flavors and preservatives in her food really helped.  Reading the information that came with the Feingold diet we read about symptoms of gluten intolerance.  We decided to all go gluten free to see what would happen.  We found that eating gluten free helped with her chronic diarrhea (and mine too, hmm) as well as her belly pains.  We thought we'd found the problem.  Apparently we'd only solved one of the symptoms of her problem. 

As she continued on the seizure meds she got more and more malnourished.  We tried another med because she had started getting bad side effects from the meds.  She got stomach pains, heartburn, depression, suicidal ideation, weight loss, anorexia, weakness, inability to focus...  The new med was not better.  She was so bad at one point she couldn't hold a pencil without fisting it.  We decided the seizures were better than the meds.  We stopped the meds and tried to fatten her up, unsuccessfully.  She still had little appetite, textures were a big problem, but she didn't have any more seizures... until we were in the middle of our move to Alaska two years ago.  They found another kind of medication that she seemed to tolerate better - at least she wasn't wanting to kill herself or crying all the time.  This one had the unfortunate side effect of heartburn and GI upset though.

Last spring I took a look at her growth chart.  She was down to the < 1% for weight and 0% for BMI.  Her height was okay in the 25%, but you have to realize that both of her parents are 6 feet tall and all her siblings are tall people, and her grandfather was 7 feet tall.  25% isn't her expected height range.  She hadn't any female pubertal characteristics.  I took her to a pediatric endocrinologist who came to our office quarterly.  She measured her bone growth and at just shy of 14 years her bones were measuring that of a ten year old.  She felt this might be why she was pubertally delayed.  All her labs showed she didn't have any endocrine issues.  She wanted to see her again in October to see how she was doing.  In October I mentioned my concern about her lack of appetite.  I thought maybe her stomach was congenitally small because she couldn't eat much and she got full so easily.  I also mentioned she was having some joint pains.  This led to the referral to more blood work and found that her sed rate was elevated to 51 (<20 normal, I think) and her CRP was 2.9 (<1.0 normal).  This got us referred to rheumatology (which we still have yet to get an appointment) and gastroenterology.

The rest of the story you can read from the beginning of this blog.

1 comment:

  1. Oh my, what a hard road you all have been on. I can't even imagine. Thank you for sharing from your heart and your story.