All ~ Thank you all for your suggestions and concern. He will be seeing the ophthalmologist tomorrow morning. She is constant contact, consulting his endocrinologist.
My son just turned 13. Due to his weight, he should be on 100mg of Prednisone. The endocrinologist said to give him 80 for two weeks, then 60 for two weeks, 40 for two weeks, 20 for two weeks, by then, the endocrinologist will give me the final directions to get him back to his normal Cortef dosing.
In a nutshell, I will try to explain what is going on with him. First, I’ll start with his name ~ Charlie.
Charlie has CAH and CPP. Last January (2006) Charlie went downhill. He was having terrible headaches. There was pressure on his head and optic nerves were swelled. They did an emergency spinal tap. That was the first of about 8 taps during the year of 2006.
Charlie was diagnosed with Pseudotumor Cerebri. He now had a Neurologist and Neurosurgeon added to the specialty doctors. They added 4 medications to his daily regiment last year (all he is off of now).
Charlie had scheduled taps and had emergency taps in 2006. After they couldn’t increase the meds anymore, it was decided that there was no other way... a shunt was needed to release the excess spinal fluid that Charlie couldn’t absorb.
December 8, 2006 during a scheduled tap, they did the shunt surgery. Charlie felt great. His sister (who is so strong, thank God) and I saw our old, funny, silly Charlie back. It felt really good to smile again!
Early January 2007 he needed his pressure changed in the shunt. The Neurosurgeon can do this with magnetic devices ~ thank God for the person who created this shunt! No surgery was needed.
Last week, February 8th Charlie left eye hurt to move. After the neurosurgeon tested and assured me the shunt was working properly, off to the ophthalmologist for testing and a cat scan.
Charlie was diagnosed Friday evening with nothing “serious”. We were back at the ER on Saturday morning, his eye worsened over night. They assured me that everything was okay and sometimes it gets worse before better.
When the final report on the cat scan was called to the ophthalmologist on Monday, she called me. They misdiagnosed him.
I brought Charlie back to the optho the next day for more testing and blood work. The best scenario is he will be diagnosed with Orbital Pseudotumor, the worst Leukemia or Lymphoma. This is when Prednisone came in. They needed to get the swelling under control. The doctor, my mom, and I just cried.
PS…. GOOD NEWS – although all the results aren’t in, we do know it is NOT cancer! The optho called me today as soon as she found out!
Charlie now has blurred vision looking at a distance. Tomorrow she will do more testing and more blood work. He might need his eye glass prescription changed, or it could be diabetes…
What more can I say? I am so tired. I have an awesome, supportive family and I am very lucky. But doing this is exhausting. Charlie’s Dad passed away suddenly in September 2005. I never realized how much he did until he was gone. Just being with me during hospital stays so I could take a walk and get a coffee…
Give and extra kiss and hugs to your loved ones tonight.
Virtual Hugs to all of you!
Diane
branch114@yahoo.com