Kayla's Story

Hi everyone, I was blessed with the most beautiful twin daughters in the world. In December 2007, I noticed some things with my daughter Kayla; things that were not typical of a 6-year old. While helping them with their homework one night, I noticed Kayla's hands were shaking quite a bit and she was having a hard time concentrating on her homework. I asked her if she was feeling all right and she said yes, but she was feeling kind of tired tonight. Kayla has always been very active and full of energy, so I thought to myself that she must be coming down with something.

Over the next month, Kayla's energy level dropped significantly and she could barely walk up and down the stairs. She was always complaining of leg pains so I called her doctor and scheduled an appointment for her that week. He examined her but really found nothing. He said he believed that the pains in her legs were nothing more than growing pains and that they would eventually go away; however, they did not. There were days that I had to carry her up and down the stairs because her legs were bothering her so much. On these days, I noticed that I could really feel her heart pounding against my chest as I carried her. I again scheduled an appointment with her pediatrician for later that week.

Two days before Kayla's appointment, I noticed a small lump on her left thigh. I examined it and asked her if it hurt and she said a little. I made a mental note to also mention this at her appointment in 2 days.

I took Kayla in for her scheduled appointment but her doctor was not there and we had a fill in. I explained the rapid heartbeat to him and showed him the lump on her leg. Kayla's heart rate was 127, her blood pressure was 110/80 on this visit, and he said that Kayla's doctor would have to keep an eye on that but the lump on her leg was most likely a bug bite. Over the next 2 months the so-called bug bite on Kayla's leg did not go away. There would be days that there was a very large bruise around it, but the lump itself would remain white. I called to make her another appointment with her pediatrician and was told that he would be on vacation for a few weeks, but we could see another doctor. I decided against it and took her to the emergency room instead.

At the emergency room, Kayla's heart rate was 130 and her blood pressure was 112/84. The emergency room doctor informed me that the lump on her leg was not a bug bite, which by now I already knew. He said it was a cyst and would need to be removed. He put Kayla on an antibiotic to help clear up any infection that may be surrounding the cyst. He told me to get a referral from her doctor for a general surgeon to have the cyst evaluated for possible surgical removal. I started to wonder how I would accomplish this as her pediatrician was on vacation at the time.

The following day I called her doctor's office and scheduled an appointment for the first day he would be back. I brought her in and he examined her leg and gave me a referral for a Pediatric surgeon. Kayla's heart rate was 133, her blood pressure was 112/84 on this visit, and he said we would keep an eye on it. I was already keeping an eye on her heart rate and blood pressure. Her heart rate was getting faster and her pressure was getting higher.

I made her an appointment with the general surgeon and took her in. When the nurse began to take her pressure and pulse, I informed her of Kayla's rapid heartbeat and high blood pressure. She noted both, heart rate 135 and blood pressure 120/88; the highest so far.

The surgeon was very nice; he asked about the rapid heartbeat, the high pressure, but really said nothing about either. Her leg was examined and she was scheduled for surgery on September 12th 2008.

The day of Kayla's surgery came, I was an absolute wreck. All I could think was why was her heart beating so fast, could she have a heart condition, after all my own father died at the age of 27 from Aortic Stenosis. Would she be all right throughout the surgery. I spoke to Kayla's anesthesiologist and told her of my concerns. She said she was aware of Kayla's rapid heartbeat and that she would be keeping a close eye on things. She also said that Kayla would be on a heart monitor throughout the surgery. This made me feel a little better, but I still wanted to know why her heart was beating so fast.

About 10 minutes before Kayla's surgery, we were informed that her surgeon was still with the patient before Kayla and that Kayla's surgery would have to be postponed. I was relieved and saddened all at the same time. Relieved that she wouldn't be put under with that fast heartbeat and saddened that she would have to go through this all over again.

They rescheduled her surgery for October 6th (almost a month later). Meanwhile, her heart rate was getting faster, her shaking was getting worse and her energy level was non-existent. I also noticed that she could eat her weight in food. "What was going on; was I the only one who could see that there was something wrong here?"

I again scheduled her for a visit with her pediatrician; by now I am sure I was labeled as an annoyance but I didn't care. This was one of my children and I wanted to know what was wrong. As her mom I knew something was wrong with her. Kayla's heart rate was 139 and her blood pressure was 124/90 but since her doctor was not there again, it was noted and wrote off as her being anxious around doctors (the whole white coat theory). I wasn't buying what this doctor was selling; besides, there was no doctor at home and her heart always beat fast, even while she slept.

Finally, the day of Kayla's surgery arrived, her heart rate was 140, her pressure was 120/88 and the anestesiologist reminded me that it would be watched and she would be on a heart monitor. That still didn't relax me at all.

I went back with my baby. Once she fell asleep I was taken to the waiting room, to do just that, wait. It wasn't long before they called my name and told me her surgery was over and I could go back to recovery. I practically ran there. There was my sweet little angel, still half asleep and groggy, but all right. Thank you God. I promised her right then, that I would find someone who would listen and help. She was too groggy and too little to understand, but I knew.

A week after Kayla's surgery, she was complaining of a slight ear ache. I noticed the time and knew that her doctor's office would be closed so I took her to the emergency room. Kayla's heart rate was 142, her blood pressure was 152/94, extremely high, even for an adult. I told the emergency room doctor everything. From her heart rate increasing, to her blood pressure going up, to her leg pains and how I had to carry her on some days, to even her enormous apitite. She did an ECG, which found nothing, but she gave me a paper to take to Kayla's doctor. The paper indicated that she recommended for Kayla to see a pediatric cardiologist and an Endocronologist. THANK YOU GOD! finally someone listened. She also gave me an antibiotic for Kayla's ear infection and we went home. That piece of paper was like finding a lost treasure, one I needed to guard with my life.

The following morning, I called Kayla's doctor and informed him of our visit to the emergency room. He said he could give me a referral for a Pediatric Cardiologist, but he could do the blood work an Endocrinologist would do, right there in his office. He gave us an appointment for the next day, which would be October 24th 2008.

Kayla's heart rate and blood pressure was exactly the same as the night before. He checked her out and told me he wished I had said something more to him; he was unaware of all that was going on. He really was unaware of it all, considering at this time he was out of his office more than he was in. I told him that I had mentioned to his fill ins everything that I mentioned to him that day. All he could say was that he would have done more had he known. He gave me a number for a Pediatric Cardiologist and we left the office and went home to play the waiting game. I wondered how long it would take for the results to come back and what they would find if anything. I tried the Cardiologist's number, but the office was already closed, so we would have to wait until monday to get an appointment.

That weekend slowly went by. Kayla, her twin sister, and I played a lot of board games, since we weren't sure if there was anything wrong with her heart or not. I was trying to keep her as calm and relaxed as possible. Considering she hadn't really had much energy to do anything anymore, that was not hard to do.

Monday morning finally arrived and I took the girls to school, at around 9:30 or so Kayla's doctor called. He had the results of her blood work, He said that her thyroid levels were very high and that she had Hyperthyroidism. He also said that a Pediatric Endocrinologist was awaiting my call and that I needed to call immediately. We hung up and I dialed the number with shaking hands. "Hyperthyroidism, what was that?" A woman answered, I told her who I was and she said, "Kayla's mom?" She then put me right through to the doctor, who informed me that he already had an appointment for Kayla and that I needed to get her out of school right now and bring her to his office. I didn't ask too many questions, his urgency said it all.

An hour or so later, we were sitting in the waiting room of the David Rubinstein Children’s Health Building. Again that word was going through my head. "Hyperthyroidism, what was it and was she going to be all right?" Finally, her name was called and we went into the back. I don't even remember what her heart rate and blood pressure was on that day; I was too nervous. This doctor explains what Hyperthyroidism was to me and that he believed it was due to her having Graves Disease. More frightening words, "Graves Disease." He gave me 2 prescriptions, one for Tapazole, to help with the hyperthyroidism, and Propranolol, a beta blocker to help with her heart rate and palse. They took more blood, to determine if it was definitely graves Disease and we went home. This was October 27 2008.

On October 31 2008, they called to inform me that it was definitely Graves Disease. Now, I wanted to know everything. How did she get it? Is there a cure? What happens now? Does her twin sister need to be tested? They said they aren't really sure how you get Graves Disease, and that there was no cure. They could treat her symptoms, but not cure the disease. They said her twin sister did not need to be tested, unless she exhibbited signs of it as well. I wasn't waiting for her to get like Kayla, I had my child tested the very next week, and she is fine, No Graves Disease and no Hyperthyroidism.

I went on the internet to find out all I could on these diseases. I found a lot of information on them both; however, it was very hard to find and scattered all over the place.

That's when I decided to create, "Young Graves". I didn't want other children and their parents to have to go through what we had to. I didn't want them having to surf for days or weeks to find what they need. Our children are the most important things in our lives, and if we can't help them and find the information we need to make them well, who will.

I do not believe that had my child been diagnosed sooner, that she would not have Graves Disease or Hyperthyroidism, but I believe, had someone listened sooner, she wouldn't have had to go through all she did. You are your childs best advocate; therefore, if you believe something is not right with your child, tell anyone that will listen. There are some wonderful doctors out there and they will help in any way they can. Just keep fighting. Remember, when it comes to our children, making them well starts with us. Do your research and ask a lot of questions, the only stupid question, is the one that never gets asked. I hope you find a lot of helpful information on this site, but if there is something you would like to see on here, please feel free toEmail Meand let me know how I can better the site. This site was not only created for me, it is here for you as well. Take Care,