Hello all,
I am here looking for more information to help my youngest child. I know that this is a very long introduction, I am going to try to give a bit of our background so that this is an accurate picture. Finn has always been a very different child, he is our 5th child and the others have all been for the most part healthy, Finn has not. He is having some very weird health issues and after more than 10 different doctors we are still looking for answers.
He has many issues with rashes and lumps appearing on his body. He is just turned three years old, and has been experiencing all of these symptoms for more than a year now,at first the doctors were sure that the rashes were from different bug bites and then it was that he was obviously reacting to an allergen. Now they are not really sure what is going on but he is still suffering from the rashes that started more than 2 years ago. The newest problems are the lumps that have begun appearing on his body, they began with a lump on his heel that the pediatrician was sure was from his shoes, though I wasn't sure as he had not been wearing his shoes much at the time. Then a few weeks after the heel lump I noticed a lump on his index finger, where it meets his hand. Then the same night I felt a lump starting to appear on his elbow area. I brought him back to his ped and he was sure that the three lumps were unrelated, I was not and I ended up mentioning the lumps to his dermatologist, who was sure that they were not all unrelated. We were referred to a surgeon to have a biopsy and he was convinced that the lumps on his finger and arm were cat scratch disease and the lump on his heel was an orthopedic issue. We went to the Infectious disease specialist and they were sure that it was not
Cat scratch.
The pediatric ortho was not sure what it was but after he looked at the xray of Finn's foot he wanted to send us to a Rheumatologist, we went to Boston Children's Rheumatology dep't and had the bad luck of Finn's lumps starting to lessen before we had the appointment. They sent us for bloodwork and asked that we get a biopsy of his skin lesions from the dermatologist. When we left they were not sure what could be going on with Finn, the paperwork that we have received from them says that he could have an auto-immune issue but the bloodwork is inconclusive. We were sent to another surgeon, this one specializes in Neonatal and Perinatal surgery and he is convinced that Finn has a joint- immune related issue. I am looking to see what is the normal time-frame for diagnosis for things such as these, we are now into more than a year of waiting and he is not getting better. In the past month he has had three new lumps show up and they are all on joints, he now has them on his heel, his arm, his finger, his hand/finger joint and his big toe/foot joint.
We have asked Finn if he is in pain and he will tell me that he is, he tells me that everything hurts. The only doctor who has really paid attention to his reaction to touch or his pain response was the new surgeon. Finn doesn't seem to respond to pain like the rest of our kids, he does cry when he is hurt but he almost seems to be used to pain, as if it takes more to bring him down.
I am sorry that everything is so fragmented, alot is going on here ! Thank you so much for your patience and help,
laura
