Reflecting on Spotting the Zebra. Dr. Ehert has been so good to us. So thorough and she even fielded questions from my sister, Hunter’s grandma. She really wanted us to be discharged to Frazier Rehab, across the street, for an indefinite amount of time.
I just want to go home…even for just a night.
Realize, I needed to see my kids, my kids needed to see me and Hunter. I needed my shower, my bed…just for a few hours. We had declined the offer to go to Frazier and I set up Speech (he had lost some of his speech), Occupational therapy, and physical therapy. If the doctors were not satisfied with his progress, then we would go.
The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had B) there were literally no more tests to run C) I begged. So, without a diagnosis…..we hustled and got out of that hospital. We drove for about 3 hrs and then my phone rang. It was Dr. Ehert. She said that we left without seeing her. I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.
Then….there was a pause
She asked me how far out of Louisville we were. I told her that I was about 3 hrs from there and a 1/2 hour from home. She explained to me, so gingerly, that one of his test (1 of about 200) came back positive and that we needed to turn around and get back up there to start steroids. I asked her how urgent it was and if I could just go home for a bit and she was hesitant.
She said the sooner they start it, the sooner he could get better. The treatment was to last for 5 days. She never mentioned a diagnosis but there was a definite concern in her voice. I told her that I was going home. There were things I needed to do like getting a shower, seeing my kids, and sleeping in my own bed. In the end, I would be happy to leave in the morning and as long as his life was not in danger. That is what I was going to do. I had to mentally prepare myself to be up there for that long, again.
We got home and it was sweet.
He was so excited to see everyone and everyone was excited to see him. I jumped in the shower and blew off all that nasty hospital funk. It was glorious. I slept so well that night. About 9 am the next morning, we headed out again. I felt more prepared. I knew what to pack and was mentally ready. We got up there and we were able to bypass the ER and go to quick admitting. They were expecting us. We met up with the beloved IV team again and we got an IV started for him and for Superman 🙂 They told me that they were going to give him high doses of steroids for the next 5 days.
Steroids are supposed to make you eat and make you a bit grouchy…I could not get this child to eat anything. He wouldn’t even eat a cookie. He did sleep some but it was restless. After 3 doses of steroids, he was able to stand on his own and maybe take a step or two. His tremors lessened. His voice was not as shaky, but his eyes were everywhere!
Phone Call from the Beach
Early the next morning, at 1 am, I had finally shut my eyes for a moment and in comes the nurse. She said that I had a phone call. My thoughts are “who on earth is calling me, on a nurses cellphone, at 1 am in the morning.” It was Dr. Puri. He is a pediatric neurologist and he was calling me from Myrtle Beach. I asked him why he was calling me while he was on vacation and he said that he wanted to ease my nerves.
He is a phenomenal doctor. I have been told that he is well loved, well educated, and he has seen some bizarre things. There was an assurance that there was no worry of childhood MS, which is what I thought he might have because of his symptoms. He said because no lesions were found, anywhere. That it is highly unlikely that he has this. He said he believed it to be another autoimmune disease and he assured me that they, as a team, would figure it out.
In comes Dr. Sweeney. I came close to dismissing him because he looked the age of my son, I thought that he was a youth volunteer. He said that the team had assembled and discussed our case. They wanted to run more tests but felt pretty confident in the diagnosis. He basically kicked every other doctor off the case because this was strictly a neuro case and there was no need for a bunch of Drs telling me their opinions and interrupting our day when they didn’t need too.
We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region. They knew what they were looking for. We did a follow-up urine test and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood. I put my foot down, at that point and told them that if ANY IVs or blood draws were necessary…ONLY the IV team would do this for me.
All Tests Were Normal
Once all these tests came back (normal, I might add)…Dr. Sweeney stopped the steroids (he had had 8 doses of it) and he started him on IVIg (immunotherapy) for about 6 1/2 hrs. He said when that was finished we could go home. There was nothing else for them to do or any more tests, at the moment, that they could do. I could do the same thing here as they could there.
They did want me to take him to Frazier for a couple of weeks. I explained that we already had therapy and equipment in place and they were satisfied with that, for now. We would readdress it when we came back for our follow up appointment. As of now, all tests were clear except for high pressure with the spinal tap and that test was positive for Oligoclonal Banding.
Spotting the Zebra
Dr. Sweeney captured the rogue zebra in a third diagnosis but changed his mind to a fourth diagnosis. That fourth diagnosis was Ataxia Telangiectasia Like Disorder. Then, we learned a year later, that he DID NOT have ATLD1. So, the fifth diagnosis was back to the third diagnosis of Opsoclonus Myoclonus Syndrome.
As I am reflecting on spotting that rogue zebra, are you confused yet? I am.