the follow-up phone call from the neurologist herself
My phone rang today and I couldn't get to it till after it stopped. Thirty minutes later, the same number rang again. I answered it quickly.
"Erika? It's Dr. E. I hope it's OK I am calling you one day earlier than I told you I would."
OK???? Yes, mamm, please keep going.
She told me that she had conferenced with another doctor, a pediatric neuroimmunologist from Children's. He had been at Hopkins for 15 years before coming to our city. She told me that he wanted to take on our case. They both felt that "acquired Autism," where the child regresses at a later point (typically around 18 months), was not accurate for Hunter, since he never suffered a language loss. They felt that the autoimmune response that was occurring could be ceased, or even reversed, with the proper diagnostic tools and treatment (possibly IVIG).
"So Dr. G wants Hunter admitted so they can run a few tests- just so you know that could include a spinal tap- and then begin the proper procedures, which could mean IVIG."
Now that the moment is here, the moment I have dreamed about, the answer to "fixing" my son...I am not ready for it.
I instantly became nervous about the spinal tap, the blood products, the hospital stay...everything.
I started doubting that the diagnosis is accurate. I started doubting my case history. Did I imagine part of this? Did he really regress the last 7 weeks since getting strep?
I googled. Big mistake. Googling at your most vulnerable moment is never the smartest decision.
Dr. E was so excited to tell me the news, to inform me that a specialized doctor like him would see our son...but all I could think about was just leaving Hunter the way he is.
Tonight as Peter and I talked it through, we both reconfirmed that we did not envision the things that we have recorded, and that we needed to hear the neurologist's thoughts. The office is supposed to call me in the next two days to schedule.
Tonight I also realized tonight that he has a new tic. Something that wasn't there before getting strep again. It's a vocal tic; he is making this strange noise with his nose and mouth. I don't think anyone would have noticed, but when I was waiting for him earlier today, I noticed it and then tonight realized he did it 3 more times (in large group settings today. I haven't noticed a tic since the initial eye blinking at 17 months.
Falling asleep tonight so hope this makes sense. Still processing so many thoughts, feelings, emotions. Hoping for clarity.
"Erika? It's Dr. E. I hope it's OK I am calling you one day earlier than I told you I would."
OK???? Yes, mamm, please keep going.
She told me that she had conferenced with another doctor, a pediatric neuroimmunologist from Children's. He had been at Hopkins for 15 years before coming to our city. She told me that he wanted to take on our case. They both felt that "acquired Autism," where the child regresses at a later point (typically around 18 months), was not accurate for Hunter, since he never suffered a language loss. They felt that the autoimmune response that was occurring could be ceased, or even reversed, with the proper diagnostic tools and treatment (possibly IVIG).
"So Dr. G wants Hunter admitted so they can run a few tests- just so you know that could include a spinal tap- and then begin the proper procedures, which could mean IVIG."
Now that the moment is here, the moment I have dreamed about, the answer to "fixing" my son...I am not ready for it.
I instantly became nervous about the spinal tap, the blood products, the hospital stay...everything.
I started doubting that the diagnosis is accurate. I started doubting my case history. Did I imagine part of this? Did he really regress the last 7 weeks since getting strep?
I googled. Big mistake. Googling at your most vulnerable moment is never the smartest decision.
Dr. E was so excited to tell me the news, to inform me that a specialized doctor like him would see our son...but all I could think about was just leaving Hunter the way he is.
Tonight as Peter and I talked it through, we both reconfirmed that we did not envision the things that we have recorded, and that we needed to hear the neurologist's thoughts. The office is supposed to call me in the next two days to schedule.
Tonight I also realized tonight that he has a new tic. Something that wasn't there before getting strep again. It's a vocal tic; he is making this strange noise with his nose and mouth. I don't think anyone would have noticed, but when I was waiting for him earlier today, I noticed it and then tonight realized he did it 3 more times (in large group settings today. I haven't noticed a tic since the initial eye blinking at 17 months.
Falling asleep tonight so hope this makes sense. Still processing so many thoughts, feelings, emotions. Hoping for clarity.
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