It started when he was 6 months old. He was getting fevers and frequent ear infections like clockwork. Every 28-30 days on the dot, his fever would spike to 104-106, for 3 days, then come back down. For over a year, we went through antibiotics after antibiotics. Before his 1^st birthday, he had over 20 ear infections. Shortly after his first birthday, he had tubes placed in his ears. The ear infections subsided, but the fevers kept coming – every 28-30 days – clockwork.

By the time he was two years old, he had pneumonia, bronchitis, strep throat, and 2 cases of hand-foot-mouth disease. These infections were around the clock. Once one subsided, another one would begin. Around two years old is when the rashes started. They were mainly on his bottom, and his legs. Within that same year is when he started to refuse to walk because of his leg pain. His pediatrician feared it was leukemia. So many vials of blood were drawn that day. Thankfully, it wasn’t cancer!

From there, Avery was referred to a rheumatologist at UCLA. She suspected Avery had a type of Periodic Fever Syndrome. She ran a genetic panel, and found he had 2 mutations on the MEFV gene, but the mutations were of “unknown significance”, and he was still undiagnosed. He was atypical of any of the periodic fever syndromes, and the only constant was the fevers.

In June of 2016, we decided to have his tonsils removed, in hopes that it would help with his frequent infections and fevers. Luckily, it helped with controlling his high fevers. Unfortunately, he still gets fevers, but they’re very low grade now. He still has the frequent infections.

In the last 24 months, we’ve added daily nose bleeds (he’s had 1 cauterization already – which hasn’t helped), daily stomach pain, frequent widespread rashes, mouth pain, swollen lymph nodes under his arms, around his groin, and down his neck, and anemia. We were then sent to an Infectious Disease Specialist, who ruled out every Infectious Disease you can think of. I believe he had 20 vials drawn at once. The Infectious Disease Specialist then sent us to an oncologist to rule out Lymphoma. The biopsy came back as “Reactive Follicular Hyperplasia”. That meant no cancer! Which is great, but still no diagnosis.

His biopsy was back in March of 2018, and his remaining lymph nodes are still enlarged, around 4cm, and the Dr’s have no idea why.

Shortly after seeing the oncologist, we were sent to a hematologist because his rheumatologist now suspected he had something called Auto Immune Lymphoproliferative Syndrome. After numerous rounds of blood work, that was ruled out.

Now, we’re waiting to be seen at Texas Children’s Hospital in Houston, to hopefully find some sort of answer.

Contact Information:

Alyssa Langston

C: 661-302-2106

E: asandiego89@gmail.com