and the answer is...
So, if you have been following the blog, you might have sensed the pessimism and defeat in my writing from a few days ago. Guess you have to hit rock bottom before you can pick yourself up and be thankful for unanswered prayers.
The last immunologist we saw, Dr. W, wanted us to schedule an appointment with Dr. E at Children's. My pediatrician had recommended we see her as well. Little did I know how problematic it would be to get an appointment. On Monday, after countless messages of phone tag with Dr. E's nurse, the clinical manager called me and wanted me to explain the situation. Unfortunately, he informed me that since we had seen Dr. E's partner, Dr. G, last year, we would have to follow her instead of Dr. E. Of course I appealed this logic, in the sense that the last time we saw Dr. G, the month before we had the full Autism assessment, she told us that Hunter did not have Autism, but just a sensory integration disorder. She was instrumental, however, in scheduling the assessment within the next month so that it could be completed before the end of the year (when it typically takes 6 months to a year to get in). I politely explained to the clinical manager my hesitations with seeing Dr. G, but even after my PCP called and spoke to them, they would not budge.
I could get in to see her in a year, if I wanted to wait.
A year???? A week seems like an eternity when I am running the race against the clock. The most recovery can occur before a child turns five...and especially if there is a medical factor with Hunter, I want it fixed NOW.
So I did what any mom would do- I huffed and puffed for a few days and tried to remember that I needed to do what was in the best interest of my son, regardless of the frustration I felt. I had it on my list to call the office back and schedule the follow-up with Dr. G.
However, today, when Hunter was at OT, I received a phone call from Ben, the office manager. He informed me that he had spoken to my PCP, reviewed the case with Dr. E, and told me my only option was to see Dr. G. He said he had a cancellation that afternoon at 3, but otherwise we were on the schedule for January 11. At first I told him there was no way I could make it- had spent the whole morning cleaning, hadn't showered, hadn't prepared my two inch binder like I typically do...but after thinking about it and finding a sitter for Peyton, a ride from school for Paige...we confirmed the appointment and we were on our way.
Hunter had OT and his adapted swim lesson after school today, so he fell asleep quickly in the car on the thirty minute drive. I switched the Fresh Beat Band CD to the Christian radio station, and as the song ended, God spoke to me. Laura Story, "Blessings," began to play. Out of the millions of songs on the charts, MY song came on. I have posted links to this song before, because it is such an amazing message. This week I have you-tubed it countless times to keep my head in the right direction...and there it was, on my radio. The announcer came on after the song ended and said, "I really needed to hear that song today, didn't you?"
I actually missed my turn for the appointment, but I figured the excuse, "I missed my exit because I was praying" would be acceptable.
Dr. G was quick, but to the point, and I left the appointment with a brain swarming full of information to ponder. She took several notes as I reviewed his health history, asked questions, and then proceeded to speak faster than I could write.
Her number one hypothesis was PANDAS. I had just erased it from my mind the last few weeks after meeting with both immunologists who discounted it. She said he met all the criteria, and it was quite possible to have both PANDAS and PDD-NOS. She said other autoimmune disorders could include MS and demyelinating disorders (but they don't have psychiatric manifestations).
I just have to include here that two weeks ago, when Peter was in LA on business, he texted me that he saw Dr. K at his hotel! He was hanging out in the lobby, and Peter waited until it looked like he was finished with his conversation to go and say hello. He recognized him and asked how "dude" was doing. Peter told him that we were visiting with a few other doctors before we made our decision. It turns out Dr. K was presenting at a PANDAS conference right there at the hotel. LA is not exactly the smallest city, and he was at the same hotel as Peter. Coincidence?!?!?
So back to today and Dr. G, the neurologist...
She felt that an MRI and an EEG were clinically necessary at this point. She thought Hunter had an MRI completed with his previous neurologist, but I told her he only had a wakeful EEG. She said the MRI could show normal results, or it would indicate demyelinating disorders, lesions on the brain, or structural abnormalities. It would also show inflammation (which she commented on with the steroid burst, in the fact that steroids are given for any autoimmune disorders, but they are acute- once the steroids wear off, the symptoms return, which is exactly what we saw). Seizure activity can sometimes be difficult to detect, so she wanted to repeat the EEG in the correct method, with Hunter being sleep-deprived. She is hoping that the MRI will indicate any abnormalities, even though we might not find a treatable cause. She felt that a spinal tap was too invasive and due to the fact that he is progressing instead of regressing at this point, she didn't think encephalitis or other more serious factors were involved.
Her other piece of advice was to see an infectious disease doctor, which my mom and I had discussed earlier and was the last step on my search.
So the answer is...
...that you might need to have some questions unanswered in order to find the correct path. As Dr. D, the first immunologist we saw, told me, "You need to keep going...you just need to be in the right place."
We were so frustrated when we arrived at our first appointment with Dr. G in November of 2011. We had been told we would be meeting with the team, so we assumed a transdisciplinary assessment was in order. However, I know now that we were sent there for a reason. I saved an email from Hunter's teacher at the time, and she wrote that "God has a perfect plan for timing"...and I am assuming we were not quite ready for that diagnosis, as well as the fact that we needed her initial appointment to come back a year later and be able to order an MRI and EEG to be completed within two weeks.
A year ago, we were not in the right place...but today, I firmly believe we were.
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