13 Year Old With Blastomycosis
March of 2019, my 13 yr old son started to have sores on his legs and pain in his ankles at night. The ER took X-rays of his ankles and ruled out fractures and suggested the sores were bug bites. His pediatrician took a strep test and he was diagnosed with strep and said the sores and ankle pain was a rare side effect of the strep. He was given an antibiotic and steroids at that time. The pain in his ankles increased and it was suggested he might have rheumatoid arthritis. After visiting an arthritis specialist, arthritis was eliminated. The sores were open and draining and by this time he had several. And the pain was so intense he was now on a pain med and barely making it through his day at school and he was getting about 3 hours of sleep at night. The Doctors were puzzled at the extent and reaction of the skin ulcers so they sent us to a dermatologist. It has been a devastating process watching my son go through such pain and having no answers after seeing so many professionals. Painful biopsies and cultures were done and we were given the news that Garrett has a rare infection called Blastomycosis. Very rare for small part of the world. After the diagnosis we were sent to an infectious disease Dr. Recent x-rays and 2 very long and painful MRI’s have shown that is in his bones and has reached a spot on his brain. Now it is Chronic Disseminated Cutaneous Blastomycosis.
They scheduled him for immediate surgery at Riley July 1, 2019. We spent a week at Riley Children’s Hospital in Indianapolis. He had his first surgery to remove the abscess from his heels and one ankle bone; and they rebuilt the bone back and inserted a time release medication, with the possible prognosis of having to go back in surgically.
They have to do another brain and spinal MRI and it is a possibility he will need brain surgery and shoulder surgery to remove another infected bone in his shoulder.
I’m thankful that the infectious disease team is with him and are starting treatments. I hope that under their supervision, there is more knowledge gained from his rare case and perhaps more awareness. I pray that no one else will ever have to go through this experience as it has been terrifying and life threatening.
We are told this may take up to a year of treatments, x-rays and MRI’s, brain surgery and home health care to obliterate this out of his system. We are praying for fast recovery and healing. We are hopeful and so blessed by the support of our loved ones, but we know that the medical expenses already accrued as well as the known and unknown procedures and follow-ups are too much for us to handle alone. For example, Ampho B, a medication that he is required to be on daily for 4-6 weeks costs $6,000 a day. We are asking for the support of our community and those that can understand and relate to our situation. Every donation helps us breathe a little easier during this heavy time as we care for our son post-surgery.
