Norah making the best of her stay in the Hospital...
Norah's doctor looked at Norah, Jeff and I and told us that the reason our bright, beautiful and until a few short weeks ago fantastic tennis girl was in the hospital was because a resting heart rate of 41 meant Norah's body was capable of having a heart attack at anytime.
Can I share that at 11, of all the things I worried about for my daughter, dying of a heart attack was not on the list.
It wasn't on the list, anywhere...
How did we get here?...
Our story is every parents' nightmare. Feeling in your gut that something is wrong with your child, but not getting answers. As a patient advocate, rare disease warrior; I know how to navigate the medical system. I ask the tough and uncomfortable questions; I constantly ask all of our doctors, "What you are scared we might be missing?" I get mental heath. I fight for rare disease patients. Even with that skill set, and tough questions, my daughter was misdiagnosed for months by extremely capable doctors.
I diagnosed my 11 year old with an eating disorder--her doctors didn't. I have a Bachelors of Arts in Communication in Rhetoric. I can talk you to death, but that doesn't make me a doctor. What started in November, as a run of the mill sinus infection developed into a life threatening eating disorder.
Norah has been diagnosed and is aggressively being treated for ARFID or Avoidant/Restrictive Food Intake Disorder. It was named and classified in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition or DSM-5 in 2013.
I want to take a brief pause to share a couple of notes. I didn't want to write about Norah or her health. As a rare disease advocate, I have spent years talking about medical issues; I decided long ago that my story could help others, educate, comfort and support. However, my children's stories aren't for me to tell. I wanted them both to have privacy. Jeff and I discussed for months how I should write about Norah's failing health, and each and every time, we both agreed that her health would remain within our close friends and family.
On Mother's Day weekend, our daughter was facing her multiple day as a patient at San Diego's Rady Children's Hospital; Jeff and I helplessly looked on as our daughter was on continuous EKG monitors, with round the clock monitoring, blood draws, and constant vitals. Norah's amazing medical team shared that Norah would be in the hospital likely 1-2 weeks, followed by an partial hospitalization/out-patient program in San Diego lasting another 8-10 weeks.
One day as we sat in the Ronald McDonald house, surrounded by families going through difficult times, my incredibly private, wise and thoughtful husband said,
"Kathryn, we were wrong, you are going to have to write about this... we need to share our experiences. If we keep this private we aren't being honest. Our story may help other families."
Jeff went on to say:
"If Norah had cancer or another illness we would share it... Our family and friends would rally around and wear ribbons or colored bracelets or participate in a jog-a-thon. Why is an eating disorder something we should keep quiet? Is it because it has both a physical and a mental health component?"
I'm writing this from an apartment in San Diego, while my 13 year old son finishes 7th grade with my mom in Santa Barbara. Did I mention that it's FOUR hours away (on a good day). San Diego is not our home, it is my base camp for the next many weeks (we have no idea whether it will be 5, 10 or 20 or more weeks).
What are you doing this summer?...
Because I'm learning how to feed my 11 year old daughter, so she doesn't die of a heart attack. I will spend weeks, maybe months, shuttling between lives in Santa Barbara and San Diego.
How did this happen you ask?
Did you know your child could have an eating disorder without body image involvement?
I bet you said, "No." Every one of my girlfriends with advanced college degrees said the same thing. My brilliant, practical, super smarty pants, girl tribe, would all say, Norah is the least likely girl to have body image issues or have an eating disorder. We can talk vaccines, childhood diseases, and the benefits and risks of oodles of health issues... we can and have spotted depression, anxiety an OCD. We are good moms, but none of us thought Norah had an eating disorder.
Norah has NEVER said, "I'm fat, I don't like the way I look, or I've gotta look like her..."
I had doctors ask me if she had body image issues, I told them, "No."
She scoffed when doctors ask her about body image, "My body is fine. I'm just nauseous."
Norah is a perfectionist, a stellar student, and a fantastic athlete. She puts a great deal of pressure on herself. I went to a catholic girls high school, talk about ground zero for eating disorders--100% of my classmates were headed to college. We were all perfectionists, driven and focused. Believe you me, I can spot anorexia at 100 feet. I knew Norah had all the characteristics that put her at risk for anorexia, but at 11, she was refusing to eat because she was nauseous not because she felt "fat'. Her Santa Barbara doctors thought that perhaps, her nausea was anxiety based and was contributing to her illness, but not one mentioned a possible eating disorder.
My daughter could have died over Mother's Day weekend. She could have gone to sleep and never woken up.
Did you know that according to her NEW doctors, 20% of childhood eating disorders patients are boys? I knew boys could get an eating disorder, but would have guessed it was under 5%. As the mother of a son, how did I not know this?
Do you pay attention to your child's growth chart? A sudden drop in the height growth curve may mean your child has an eating disorder. Norah's birthday is in January. When we moved to California getting into a new doctors office for her "annual wellness" pushed the visit till the spring. Her wellness visit was scheduled for May 16th, had I not taken her to San Diego for treatment; we would have learned that Norah had fallen off the height chart dropping from the 75th percentile to under the 50th percentile. This illness in addition to nearly killing her has stunted her growth.
I admit I pay more attention to the weight chart--Aren't you worried about childhood obesity?
In November, just before Thanksgiving, Norah developed a cold. Being the well trained mother, I told her it's a virus, we need to wait it out, after a week of watching her get more run down off to the pediatrician's for sinus infection diagnosis and a Z-pack. Jeff and I watched Norah not get better after the Z-pack. In the first week in December, with Christmas just round the corner, our girl was too tried. Just wiped. Norah is tough, and watching her push thorough a tough tennis lesson only to miss school the next day, wasn't going to work. Back we went to the pediatrician for the X-ray and pneumonia diagnosis. The second round of antibiotics in less than three weeks. At this point her blood work was unremarkable for the exception of a low white blood count which wasn't unusual with her double infection.
We weren't worried at all.
I don't know about you, but we are all about probiotics and when you get two rounds of antibiotics in a month--we are on it. We are all about the flora and fauna in you GI/intestinal track. It was absolutely no surprise when in early January, Norah was complaining of stomach ache and nausea. We weren't overly alarmed that after a busy Christmas, a ton of Cali rain, a tough case of pneumonia; Norah still wasn't back on track. However come the end of January, she seemed to be getting worse. Nausea was a constant complaint and the list of foods she could handle was getting shorter and shorter.
We were back in the pediatrician's office who's face matched mine. She agreed that something was seriously wrong. Eleven tubes of blood also attested to her pediatrician's concern and intention to turn over every rock to find a diagnosis. Norah's blood work was of concern too, low white count and other markers looked off, with my history of rheumatic disease I was worried, we also have pediatric cancer in the family, her doctors were worried. Norah was worked up by hematology/oncology, a rheumatologist and gastroenterology.
After each doctor ran numerous tests their were more questions than answers. In this entire process, from December to her inpatient in May, Norah lost 8 lbs. Eight pounds doesn't; seem like a lot but when you are already skinny and we later learn under weight for your height, it's devastating to your body. By April, Norah's weight had so compromised her health that her emotions and mental health were in bad shape.
In April, I turned all my attention to an eating disorder even though her doctors weren't sure. I asked her pediatrician if it was possible to have a eating disorder at 11 and not have body image issues. She told me that it was, but very rare. I asked her for her thoughts and she suggested I discuss it with Norah's psychologist.
I found a therapist who specializes in eating disorders and we made an appointment. Her conversations with us sealed the deal. She talked to us about ARFID (Avoidant/Restrictive Food Intake Disorder) and immediately got us connected with the University of California at San Diego's pediatric eating disorder program.
When we met the UCSD team they informed us that Norah is the text book definition of ARFID. For many pediatric kiddos, a nasty bug, pneumonia, or flu, kick-starts a cycle of nausea, vomiting or chocking that spins into an eating disorder. According to her doctors, Norah is experiencing real pain, it was/isn't psychosomatic, to help her get well it will take time, great doctors, therapists and nutritionists to support her back to wellness. We are forcing her to eat while she is experiencing a 7-9 on the pain/nausea scale, while her body heals. Every moment she eats, she is facing her greatest fear, the very thing she believes is making her sick.
Food.
Norah's wellness will not be immediate, we are invested in supporting our daughters mind, body and spirit. What is the saying, hindsight is 20/20. Did we miss signs. Yes. Everyone did. We consider ourselves one of the lucky families, because we have caught her illness and she is actively in treatment. What I can say is that many of the families here have similar stories, that in their heart they knew something was wrong, but the doctors didn't agree or couldn't give a definitive diagnosis. Even when a diagnosis is made, finding a facility and program equipped to treat children is hard to find. We are lucky that the nation's best programs is "only" four hours away from our home.
I urge you as you share our story with your friends and families, trust your heart, trust your children and listen. Their bodies are telling you the truth.
This is my family's story.
Kathryn
PilgrimageGal
PS. The following organizations have additional information on eating disorders. They have provided amazing support to my family. They did not compensate me nor are they aware of this post.
UC San Diego Eating Disorders Center for Treatment and Research
http://eatingdisorders.ucsd.edu/
Rady Children's Hospital Medical Behavioral Unit