Today we went to see the {new} neurologist. It was actually our first clinic visit with the doctor, and even though I’ve gotten to know the medical center pretty well lately, it was still stressful. The card they had given me was not to her clinic office, but to her teaching office, but I didn’t know that at the time. So, I found the nearest parking garage, parked and entered the building. But, I was completely lost and asked someone for directions. It was a gentleman in regular street clothes, and I didn’t know if he’d be able to help, but it turns out he was a doctor. He explained that the address was for the teaching office, and that she wouldn’t be seeing patients there. He told me where to go and even escorted me most of the way. We were trying to avoid walking in the rain, and we were able to find a way through the maze of connected skywalks. We chatted on the way and he told me he and his wife are expecting their first in just 2 weeks, so he completely understood trying to keep the little guy dry.
When the elevator doors opened, I saw that there was a regular pediatric clinic to one side and the specialty pediatric clinic to the other. There wasn’t any doubt which way to go, and I knew all the parents and babies in there were going through their own struggles. Since it was our first time in the clinic we had to fill out all the usual forms and give them our insurance cards, etc. Then, I knew we’d have a wait, so I took my time and took Z to change his diaper. When I finally sat down, a nice lady, her husband and baby girl were sitting next to me. She was pointing to Z and was telling her baby girl (probably a bit over a year) to look at the baby. She mentioned waiting a long time to see the doctor, but then mentioned 20 minutes, which I didn’t think was bad at all, especially after spending 4 hours at the ophthalmologist the day before. But, I was making polite conversation as people do and it turns out she was there to see a neurologist too. I asked if she was there to see Dr. V, and she didn’t know, just that she was there to see the neurologist. Well, in the midst of our brief conversation, a nurse came out and called Z, so I stood up to follow. The “nice” lady I had been talking to stood up and said “oh nuh-uh, she just got here and we were here first to see the neurologist.” From our conversation, I knew that her appointment was at 1 but hadn’t gotten the chance to tell her ours was at 1 too. It just appeared to her that we literally walked in and within 5 minutes we were going back to see the doctor. In actuality, we had been there probably as long as she had been, but we had been in the front office doing paperwork. Anyway, it was just one of those things, and I told myself that she was dealing with her sick little one and to cut her some slack. But, at the same time, now I’m thinking I *won’t* be making small talk with anyone in the waiting room!!!
Once we went into the room, a resident came to visit us. Now, I’m sure that residents have their hands full. But, it was abundantly clear that she had never heard of Z, never read his file, and that she didn’t know much about his condition. It was really frustrating. But, at a teaching hospital, it’s just one of those things you put up with to get the good doctors. Plus, who knows, maybe someday this resident will go on to help someone else’s baby, and maybe this experience will help her do so. Still, it’s frustrating. Plus, she told me that the MRI came back “clean”. As in, no issues. What? Now it’s clean? But, he’s still having seizures. Plus, the 1st MRI and EEG, and all subsequent EEG’s have all pointed to that same spot. How can it be gone? Well, she must have saw the confusion on my face because she promptly said that she and Dr. V. will be looking at the MRI themselves to see if the radiologist missed anything.
After the run-in with the lady in the waiting room, the incompetent resident, and now a clean MRI, I was feeling very frustrated. But, then Dr. V came in. She instantly put me at ease. She knows baby Z and she knows a lot about his condition. Her first words were that she agrees with the first reading of the MRI done at Texas Children’s and sees the same focal spot on this MRI. Well, that makes me feel better that nothing changed (for the worse) but it also makes me even more frustrated that had it been the only MRI we had and if a neurologist hadn’t checked it, that we would have had a “normal” read from that radiologist. I guess it just emphasizes the need for a team approach and to never question getting a second opinion.
Dr. V stayed in the room with us for a while, talking about baby Z and how he’s doing on the Sabril, how he is developing, how his motor skills are doing, how he did at the eye exam, etc. I showed her the video of a seizure from the night before, and SHE WATCHED IT! That in itself is a huge improvement over our first neurologist! She even showed the resident, saying that it was a good example of a classic infantile spasm, and taking the time to teach the resident.
They don’t have the full report from the MEG test, but the preliminary result is that they saw activity on both sides of the brain. We’ll see once we get the final report, but if that holds true, that means that he would not be a candidate for surgery, and I’m both happy and upset about that. I mean, I want a way to fix the problem. But, brain surgery? On my baby? It terrifies me. TERRIFIES ME! So, the fact that we will pursue other avenues at this point is fine with me. But, I do want options, so I do hope we have that option should nothing else work.
Dr. V has decided to keep baby Z on the Sabril for 2 more weeks since he is doing better. She adjusted his dosage and we’ll see if that controls his seizures any more that it already has. In two weeks, then we’ll change to either ACTH or the Ketogenic diet. The ACTH is incredibly expensive. As in, more expensive than you could possibly imagine. Plus it has terrible side effects: Cushings Syndrome (which causes weight gain, hypertension, insulin resistanse, diabetes, etc), Enlargement of the ventricals of the brain, high blood pressure, heart failure, high blood sugar, and that’s not even all of them.
Hopefully the Sabril will start to work better so we don’t have to change.
Our Journey with Infantile Spasms 