Infantile Myofibromatosis

I was recently reminded of when my now 3 year old was diagnosed with infantile myofibromatosis when she was about 9 months old. This is a condition that comprises of fibrous lumps in infants or small children. The lumps usually appear as an infant and then disappear by 2 or 3 years old with no intervention needed. In rare cases the lumps can appear on internal organs which would require surgery to remove them or it could be dangerous.

This is a fairly rare condition and I remember scouring the internet looking for information but there is not much out there. I thought I would blog about my experience and how we went about getting the diagnosis.

I had noticed a lump on her back in the bath that was long and about 2 inches in length. I was not immediately concerned but when a long lump appeared under her arm and two round lumps on her lower stomach I took her to the pediatrican. The lump on the back and arm also had hair growing on it. My pediatrician did not know what they were and referred me to a dermatologist. The dermatologist took a lump biopsy and the lab came back with the diagnosis of Infantile Myofibromatosis. I was then referred to a Pediatric Dermatologist.

There was only one Pediatric Dermatologist in the immediate area and he couldn't get Morgan in until two months away. He also did not take medical insurance (or at least not my Aetna). I told the receptionist to ask the Dr if he would be willing to squeeze in a case of Infantile Myofibramatosis, knowing it was rare and that he would want to see it for himself. Low and behold an appointment was made for a week away :-) The Ped Derm Dr admitted that he had only seen two cases of it in his medical experience and knew about as much as we did about the disease (which was quite a lot by then because I had read everything I could find). He told us to go to a Pediatric Oncologist and have them check her over.

We took Morgan to a oncologist in the area and she ordered a full body MRI to make sure that no lumps were anywhere else on her body or organs. We made an appointment at CHOP for the MRI and they had to put Morgan under to do the scan that took about 2 hours (she was now about 15 months). Fortunately, there were no more lumps than what we already knew about and we just waited for them to fade. Now, two years later, the lumps in her stomach are gone and the ones on her back and arm are very tiny (probably scar tissue from the biopsy).

We did go back to the Pediatric Dermatologist months later at his request to be a "Guess the diagnosis" case study for his interns. Morgan got a kick out of it I remember her standing in the room in her diaper waving two croissants that she got from the breakfast buffet in the office. She would giggle whenever the interns touched her lumps. I don't think they had a clue what was wrong with her :-)