For my first post I wanted to speak about an illness that caused my family many concerns for many years before being diagnosed.
After being laid off at seven months pregnant I was able to stay home for my second child. When she was twelve weeks old I started back at the gym trying to lose the baby weight.
My daughter got sick. She got sick a lot! I stopped bringing her to the gym daycare assuming it was the culprit. She still got sick! My doctor said my ten year old was bringing germs home from school. I made him change his clothes and wash up before interacting with his sister. She still got sick! I breastfed her until she was fourteen months old. She still got sick!
We were constantly on medicines and breathing treatments. I told my Pediatrician I felt like there was a pattern much like a menstrual cycle. Once a month she was sick! The sickness always started with a pale face, dark circles, allergy eyes and nose, loss of appetite, fatigue, and a temperature of 99°. By the third day the fever would get up to 103°, which dried up her runny nose and eyes but still left her no appetite and no stamina.
As she got older the fevers got higher, peaking at 106°. The whole process lasted seven days. Seven days of pushing fluids and alternating Tylenol and Motrin every 3 hours coupled with an antibiotic for the unknown infection. By the time her temp was over 101° I was in the doctor's office. He would check for the normal signs of infection that would bring on fever such as ears, throat, and bladder. When those were clear he would check her blood with a prick of the finger. Her white count was always elevated, meaning she had an infection. The doctor would prescribe antibiotics and sometimes breathing treatments were needed as well.
By the age of four my pediatrician decided I needed to see an infectious disease doctor. There clearly was a pattern but now the white count was 25,000, which could mean leukemia or some other systemic disease.
FEAR set in stronger than the hope of an answer! Going down this road was something I saw coming. I wanted the answers but at the same time I was terrified of them! We were missing out on life. One week per month we were home bound. I knew something had to change. I knew there had to be an answer. If I knew what I was dealing with things would get better.
The answers did not come easy. After three months of traveling an hour to see the infectious disease doctor, numerous interns asking me the same questions over and over, and an enormous amount of blood work, we got an answer.
PFAPA - periodic fever adenitis pharyngitis aphthous ulcer syndrome. A non life threatening disease to which there is no cure but with any luck the child will grow out of by her teens.
Well, I got my answer and I was quite relieved she was going to live! But I didn't like how she was living. I couldn't accept the no cure part of the diagnosis.
I asked my chiropractor to take a look at her neck and feel for swollen lymph nodes. He checked for oddities in a four year old neck. I figured since getting my neck adjusted helped me with lymphatic drainage maybe it would help alleviate the PFAPA symptoms.
Bingo!!! My chiropractor felt my four year olds neck while she was having the beginning symptoms of PFAPA and his eyes got big! He said with amazement, her neck is out, and it's out bad! I held my breath and said adjust her. He did. That night she coughed the most productive wet cough. The fever never got higher than 103° and it only lasted four days. I was excited and optimistic that I had found a control, not a cure, but a way of dealing. The next fever didn't come in it's typical pattern of 28 days. It was a full five weeks. In between illnesses I had the chiropractor check her neck and it was fine. No adjustments needed. When the symptoms came back we headed to get adjusted. I started preemptive strikes which lessened the duration and lengthened the in between time of the fevers. Within four months we were not on a pattern anymore. By the age of 5 we were not sick all the time. In fact, she didn't miss school, that I can remember, her whole year of kindergarten!
Unfortunately, the years of Tylenol, Motrin, Zofran, and a multitude of antibiotics have done a number on her gut. Not to mention the eating patterns that were formed of starving every three weeks and then gorging to replenish what was lost. I didn't make the best choices for her because I didn't know any better.
The purpose of this blog is to help educate others on a disease that comes from a place of inflammation. It goes undiagnosed and mistreated which causes other issues. If you suspect your child has PFAPA, tell your doctor to look for ulcers during the fever. Do not treat your child with antibiotics and over the counter drugs to control PFAPA. There are alternatives. Message me for more info on holistic options that will not have adverse long term side effects. You can control fever and symptoms of PFAPA and in my case control the symptoms of the disease! I learned from my dad, a medical doctor, not to abuse antibiotics. I learned from my child what happens when you do. Alternative medicine is helping me reverse those decisions I made out of fear and ignorance. My pediatrician has educated himself and others on PFAPA and has diagnosed many children because of my girl. I hope this blog can do the same.