I know that my blog has been rather quiet since the new year began and I want to share why. In early January, we finally received a "Permission to Assess" form from the school district after 10 months of fighting to have my son assessed by a school psychologist. It has been such a long journey this last 5 1/2 years and we feel like a major weight has been lifted off our shoulders!
Before I had children, I thought I knew what parents of those kids with whom I worked were going through. I had a younger brother and several younger cousins. I babysat. Heck, I even have a cousin with Down syndrome, so of course my personal life experience and limited work experience would be enough, right? I knew that kids had to nap. I knew that young children do not always cooperate. I knew that nonverbal kids got frustrated. I knew that parents love their kids so much that they will sacrifice their own health and sanity to get the best for their children.
HOWEVER, after having a child with special needs of my own, I realize exactly how much of a physical and emotional toll it takes to raise him. I now understood why parents came to IEP meetings either in fear, or ready for a fight. I now know why their schedules were so tight that I had difficulty scheduling my own assessments for the school district -- doctor visits, PT, OT, Speech Therapy, ABA, recreation, and that very carefully choreographed nap. I know what it feels like to live in fear for my child's life.
Now, I know you're thinking that the 3 little boys in the photo above look perfectly happy and healthy, and they are. My oldest son is nearly 2 years older than my middle son and they are virtually the same size. My oldest son (HIPAA be darned!) has battled Failure to Thrive since he was 5 days old. We supplemented with formula at 1 week, started solids at 5 months, and fed him a high-fat and high-calorie diet when he just would not gain weight. Then the vomiting began. Massive amounts of vomit that contained every single thing he had consumed that day. Tremendous amounts of vomit coming from a little boy who was not sick. Daily vomiting for 2-3 straight weeks that finally got the attention of our Pediatrics group after we continued to bring him in for the same thing 3 times. Was it as simple as his being constipated, or was it as tragic as a brain tumor?
We immediately nixed the idea of a CT scan on an 17-month-old. We took him in for abdominal x-rays to rule out fecal impaction and the poor boy could not have his mommy with him because she was 5 months pregnant. Daddy tried his best, but I could hear my son screaming from the waiting room. And, no, he was not constipated.
Then we had to rule out Diabetes. Have you ever tried to collect urine from a toddler? After a week of trying to apply a half condom/half plastic baggie to his male parts, we finally collected enough of a dribble to be tested. Not Diabetes.
Next, to rule out an obstruction. If you thought the x-ray experience was terrible, taking that kid for an Upper GI Series was an absolute nightmare. The techs nicknamed him The Incredible Hulk because they could not keep him still, even on a papoose board. He refused to drink the barium. He screamed. My, he screamed! And then they decided that the test wasn't going to happen, so it was a bunch of suffering for nothing.
All this time, I was doing my homework and was convinced that my son was having problems with malabsorption. We finally got an appointment to see a Gastroenterologist and she agreed that malabsorption may be a possibility. While I was giving blood at the local lab for my pregnancy workup, my poor little 18-pound 19-month-old gave 5 vials of blood himself. I wanted to cry right along with him. We collected 14 stool samples to rule out H. pylori, Celiac Disease, etcetera, etcetera. I have never been that intimate with anybody's poop in my life, but I collected that poop like my life depended on it, because my son's life depended on it. And I will forever be thankful for those 14 stool samples because they finally gave us an answer. MY SON HAD MALABSORPTION.
The vast majority of children with Malabsorption also have Cystic Fibrosis. The next largest group of children have Schwachman-Diamond Syndrome. So it was off for more testing. It took 3 screaming, crying tries to get a successful sweat test for CF, only to find that he was negative (which we figured, since we are not carriers). Then we were off to the geneticist. And more blood draws. And more tears from the both of us. Negative for SDS. Negative for dwarfism. Negative for Noonan Syndrome.
The verdict: Pancreatic Insufficiency. We could stop blaming ourselves. We were feeding him enough and he was eating plenty. His body just wasn't absorbing it.
He began taking enzymes to help his body absorb food, along with Polycose, to increase the calories in his food. He started gaining weight. After 2 years of this regimen, he finally hit the 10th percentile for his weight and no longer fit the clinical criteria for Failure to Thrive.
Then the behavioral problems began. That has been our biggest battle since before he was 3. Nobody knows if the ADHD, ODD, tics, and night terrors are related to his pancreatic insufficiency. Could the lack of nutrition have inhibited his neurological development? Nobody knows. It's his own private mystery that will probably never be solved.
So I get it. I've driven around the county, searching for answers. I've taken my son to an appointment a day for a full week. I've had to hold him down, screaming, while some strange woman poked him with needles. I've cried as I tried to feed him, begging him to eat so that he could gain any weight, any weight at all. I've been kicked, punched, spat on, and told that I'm stupid. I've chased him as he ran out of the house, into the street, dropped his pants and peed because I wouldn't let him do something he wanted to do. I've dragged him out of countless stores, museums, parks, and birthday parties, kicking and screaming. I have fought with the school district, desperate to have him assessed. We have paid thousands of dollars out of pocket to take him to the best local pediatric neurologist. I have been up all night, comforting him through his night terrors. I have cried for him as the invitations to play dates dried up. My husband and I sat through 10 weeks of a parenting class for children with attentional problems only to have nothing work in practice. I have held my sobbing little boy, who because of his fine motor difficulties, thinks that the authors of his school books hate him and think he's stupid.
I get it.
And I also wouldn't change my little boy for anything. That is the greatest gift he has given us -- the full-contact education in unconditional love.