posted on Apr, 2 2016 @ 11:57 PM
I'm looking for medical knowledge. Doctors, nurses, anyone who has knowledge that they can share with me. This issue concerns my 5 year old boy.
His name is Robbie. I'm going to give the basics and will answer any further questions that I can in hopes of getting answers. There are a few
different issues. I will try to explain them all.
When Robbie was born he was diagnosed with anemia at the hospital. Twice a week they took blood from his heel until he started walking at 10
months. After that, they took the blood from his head. They continued to tell me he was anemic and that his red blood cells were shaped wrong. He
was on iron supplements from the time he was about two weeks old. At about 15 months old they stopped the blood tests saying that as long as he
continued the supplements he could have the blood work done yearly. I never got a reason for the blood cells being shaped wrong. That is the words
they used....shaped wrong. We were led to believe that it wasn't an issue, just keep him on iron supplements.
The second issue is the fevers. My sweet boy runs terrible fevers for 2-3 days every 3-6 weeks. We know when the fever is coming. He gets
pale. He gets dark under his eyes. He shows signs that the fever is coming about 12 hours before it starts. These fevers run between 104 and 106.6.
Even with Motrin and Tylenol, I can barely get it lower than 102. Never a cough, rash, runny nose, nothing. With these fevers he does complain of
leg pain. So bad that he doesn't want to walk at times. These fevers started when he was a month old.
The other thing is the pain. He complains about the leg pain a time or two per week. It's constant when he has the fever. He points to one
spot about 3 inches below his left knee on the shin bone. Always that exact spot.
A month ago I took him back to his pediatrician because I want answers. He was 2 days out from the end of his fever. She ordered blood work. I
got a call from her later that afternoon. She said he's back to being anemic and that she ran a test called SED rate. She explained that it was to
look for inflammation. Apparently it was very high. She said that she was referring him to Vanderbilt Children's Hospital. I told her I would call
our insurance to check if that hospital was covered first. She said she already had and she wanted him seen before the end of the month. His
appointment at Vanderbilt was this past Tuesday. The Dr we saw was a pediatric rheumatologist, Dr Gotte. She ordered more blood work and x-ray of
his legs. She said these 3 issues, leg pain, fevers, blood issues, may or may not be part of the same problem. She suspects Periodic Fever Syndrome.
We were given steroids for the fever. When the fever starts we give 40 mgs. She said if it was the fever syndrome then the steroids would almost
immediately abort the fever.
Dr Gotte called me yesterday with some of his test results. Anemia, and high platelets, some about red blood cell width distribution. She said
she was having Hematology and a pediatric oncologist go over his test results. She asked about blood disorders in our family. My Aunt had
myeloproliferative blood disorder. She was diagnosed until her mid 40s. She died of cancer a year ago.
His next appointment is may 10th. She said plan on coming there about every six weeks until this is figured out. I'm scared to death. This is
my baby. I know that no one can diagnose him over the internet and I'm not asking for that. I just want some ideas on what to expect. More than
anything, I want to know my baby will be okay. If anyone on here knows about this, please, educate me. I have a copy of his blood test results if
anyone knows what they mean.
Thank you for taking the time to read this.