Charlie's diagnosis

(Although I wrote this on Wednesday, I am just now getting around to posting it - sleep deprivation and technology problems don't mix well.)

I decided to write this blog, as we have so many friends and family who are concerned, calling and asking about Charlie. Since our time has primarily been spent at the hospital the past few days, I thought this would be the easiest way to keep everyone informed about what is happening . . . I'll begin by letting everyone know how things got started and where we are now.

The first week of August, Charlie and Emma were enrolled in Vacation Bible School (VBS). They were so excited, especially since VBS was happening at gramma's church! On Wednesday night, August 5th, Charlie complained of a sore throat. He did not have a fever, so I sent him to bed and told him we would check his throat again in the morning. The next morning, Charlie continued to complain of a sore throat, so I gave him some meds for a pain reliever. About 10 minutes later, he was vomiting. He stayed home from VBS Thursday and Friday - he was very disappointed. He had symptoms of vomiting, sore throat, ear aches, and lethargy for Thursday - Saturday. No fever. By Sunday afternoon, he was back to his normal self - running and playing with his twin sister, Emma.

On Tuesday, August 11th, around lunch time, Charlie started to complain of leg pain (both legs, lower front area) and eye pain (both eyes, which he described as someone "poking" him in the eyes very hard). The pain was severe enough that he was screaming and crying that night and had a difficult time sleeping. This type of pain was unusual for Charlie - we knew something was wrong, so we called the on-call nurse. She did not have an explanation for the pain but advised us to continue Ibuprofen, heating pad, and ice packs for the leg pain. Although Charlie's eye pain was gone the next morning, he continued to experience leg pains the following day. On Thursday, we took Charlie to his pediatrician. The pediatrician suggested that perhaps the aches and pains were the result of his viral infection from the previous week. Charlie was tested for the flu - test came back negative. The pediatrician told us to continue what we were doing for the leg pain and continue to monitor his overall symptoms. We noticed that his leg pain seemed to be more severe at night, when he was lying down. We also started to notice that he was having difficulty doing things that he previously was able to do - he could no longer put on his own shoes and socks, bend down to touch his toes, pick things up off the floor, climb into his bed or the bathtub by himself, sit comfortably in his booster car seat, or swing his legs back-and-forth on the swing. This was very scary!! Saturday night he was so miserable and screamed and cried almost the entire night. He had not slept peacefully the past four nights. He also started to complain of a tingling sensation in his feet and toes. We called the on-call nurse and the on-call doctor at TX Children's Hospital. Neither could offer an explanation about the pain and seemed to be baffled at his symptoms. They suggested we contact the pediatrician again on Monday.

So . . . Monday afternoon (August 17th), I took Charlie to the pediatrician again. She examined Charlie again and suggested he might have meningitis due to some stiffness in the neck. She referred us to a pediatric specialist in the ER at St. Luke's Hospital in Sugarland. After another examination, the doctor at St. Luke's suggested that, instead of a problem in the neck, there might be a problem with Charlie's lower back that was causing his leg pain and mobility problems. Blood work and x-rays of lower back, hips, and legs came back with no significant findings. Next step was to see if there was something on Charlie's spinal cord (like a tumor or inflammation) that was causing his leg pain. An MRI was recommended. So, Charlie was transported to the ER at TX Children's Hospital in an ambulance (mommy got to ride along!!). Once at TX Children's Hospital, Charlie was examined by two different doctors and a neurologist. More blood work and an MRI on Charlie's spinal cord. On Tuesday morning, 18 hours from our initial visit with the pediatrician Monday afternoon, we finally had an answer. Charlie was diagnosed with Guillain-Barre Syndrome (GBS), a disorder in which the body's immune system attacks part of the nervous system. Although this appears to be a rare disorder, the neurologist at TX Children's told us that she has seen about 6 patients with GBS over the past week - very unusual.

Before I talk about treatment and prognosis, I also have to mention that after 21 hours involving doctors, examinations, blood work, x-rays, an MRI, and sitting in the ER, Charlie also endured a spinal tap to check the fluids in his spine - luckily, he was sooooo tired and worn out that he slept through the whole thing. Our big boy trooper!

Treatment and prognosis: His treatment will involve immunoglobulins through an IV for 5-10 days at TX Children's Hospital. He received his first dose on Tuesday evening. Good news - the doctors think they caught the GBS in the early stages, as it is his lower body that is affected at this point. Bad news - we have been told that the symptoms may get much worse before they get better. Possible paralysis, difficulty breathing . . . SCARY, but we will handle it as it comes. Although severe symptoms may occur, these symptoms are usually temporary and the majority of patients recover. Recovery may occur within a few weeks to several months and usually involves physical therapy and occupational therapy to help the patient regain his/her strength and functioning. Since severe symptoms are possible, Charlie is currently in a room at TX Children's on the Progressive Care Unit (PCU) - patient to nurse ratio is about 2:1, so Charlie can get immediate care if needed.

Here is a link to learn more about GBS - www.ninds.nih.gov/disorders/gbs/gbs.htm

Although the next few days are filled with uncertainty about the effectiveness of the treatment and Charlie's recovery rate, we know we are in good hands with the doctors, specialists, and therapists at TX Children's Hospital. This has all happened within such a short period of time and has seemed like a whirlwind of questions, physical exams, tests, and procedures. We have seen and talked to soooo many doctors, partly because some of his symptoms do not fit the "normal presentation" of GBS, so extra specialists or teams of doctors are consulted (plus this is considered a rare disorder). I am emotionally drained and soooo extremely tired. Luckily, my mother-in-law is in town this week, as she is here to watch the kids, since Hampton and I started back to work this week. We are grateful for our family who have been here to help and are so appreciative of friends and colleagues who have called or emailed us with their concerns and willingness to help.

I will continue to ask for prayers during these next few days. Keep us in your thoughts and prayers, especially Charlie - he is so excited about starting kindergarten this year!! He was supposed to start on Monday, August 24th, but, at this point, we have no idea when he will start. He was also excited to start playing flag football in a few weeks - don't know what will happen with that???

We will keep you all posted about Charlie's condition and recovery.

I'm dozing off as I write this, so I'm off to take a nap now . . .

Lori