If you are new to my blog, this post is the 14th in a series I call “My Journey with Tiara.” I post every Monday, starting with her conception and will continue until I catch up to her current age of 13, I describe the serious medical and emotional challenges of living with Tuberous Sclerosis. If you would like to start at the beginning here is the link to week 1. Hope you enjoy reading about her journey.
As you can see from this picture, Tiara had developed a very serious case of eczema on her face. Her seizures were well controlled for the first time in her life. She was only having a few every day but then she developed this crazy dry skin on her face and body, that itched and bled. I mean the poor kid could’t win. Nothing seemed to help. The doctor kept telling me to use steroid cream, Eucerin, Aquaphor, prescription ointments, but it was all a waste of time, because nothing made it better. Plus, as you can see from the picture, she was gaining weight by the minute.
For the next few years, Tiara enters into a new phase of her life where for once, her biggest worry isn’t seizures, but chronic pneumonia, obesity and eczema. She is eating more than a high school football player at every meal and constantly snacking. At first I didn’t think much of it. The doctors said the Depakote could increase her appetite but they never said she would become insatiable. Maybe it was a phase, maybe she would slow up, maybe her body would get used to the medicine and she wouldn’t be so hungry? Well, none of these things happened and the eating just kept getting worse. I mean overeating or seizures, which is worse? I would take over eating any day until the day my child became obese and developed a whole host of new medical problems I had never even contemplated before.
I had to start buying her new clothes every week because nothing would fit for more than a month at a time. As much as I tried to control her eating and only give her healthy food, I was losing the battle. Her favorite foods were brie cheese( or any cheese), avocados, french fries and chicken fingers. She would cry for them and beg. After watching her almost die in the past and have 100s of seizures , I always felt bad denying her, but the food was causing her so much harm. Her cardiologist was constantly getting mad at me because of her weight. “Absolutely no avocados, they are the most fattening food in the world,” he said. “But I thought they were healthy?” “Not for Tiara, no more. If you have an avocado tree, pull it out.” Luckily I didn’t even though it would have saved me hundreds off the monthly food bill. He wasn’t the only one harassing me. Her pediatrician was on me and every other doctor including her neurologist and pulmonologist because she now had asthma.
How can you stop a child from eating who is starving to death?
What everyone didn’t realize or didn’t care about was the fact that SHE WAS STARVING! She wasn’t eating for comfort, or out of boredom, the Depakote was making her famished all the time and she couldn’t control herself. If you have ever been on steroids, you know how she felt.
It was so frustrating because everyone was blaming me for her weight and telling me how bad it was for her health but I didn’t know what more to do. I had put a child safety lock on the pantry door but when she couldn’t get any food out she would lay on the ground in front of the cabinets and start kicking them to point of almost shattering the wood. As I tried to stop her she would turn on me and start kicking and hitting me. I would eventually give in and give her some crackers. All the relatives and doctors had advice to offer but no one lived with us understood how completely impossible the situation was. We tried putting a baby lock on the refrigerator and she finally tore off the handle and we had to get a new fridge. I felt so sorry for her and totally helpless all at the same time.
She had developed asthma, her blood pressure was creeping up, she was covered in eczema and in the Fall of 2003 experienced her first pneumonia that required hospitalization. She had a respiratory infection,which was nothing new and was on antibiotics but seemed to be getting worse not better. She was having lots of problems breathing even though I was giving her breathing treatments every 4 hours. I keep taking her to the pediatrician for a couple days in a row and he said her chest sounded clear, but I knew something was really wrong. He tried to check her pulse oxygen level but the machine was broken. He then told me that if I was still worried or her pallor changed I should just take her to the Emergency Room. He knew I was anything but an alarmist and if I was worried, he tended to worry too.
Two hours later I decided she looked really bad and seemed gray. I drove her to St. Joseph’s, which is the ER for CHOC. I had learned my lesson by now and always drove straight to CHOC if I thought I could get their fast enough. Once they called her into the area to check her vitals, they checked her pulse oxygen level and it was 78, it should be 98-100! The nurse panicked and kept redoing it, but the number was real. She immediately put Tiara on oxygen and rushed us into a room. The doctors came in and ordered blood tests and a chest X-ray. This was the first of about 20 chest X-rays over the next few years. They discovered she had a very serious pneumonia, even though their was no rattle in her chest, high fever or cough. Tiara could never just follow the medical program and have the appropriate symptoms for anything. She always made it difficult for the doctors to figure out what was wrong with her.
They admitted her to CHOC for several days wherein the doctors again harassed me about her weight and the eczema and tried to blame me and the weight for the severity of the pneumonia. Thanks, I love spending all my days caring for someone only to be scolded at the hospital for doing my best. Ugh…