Okay. Here is my update! Sorry for being MIA all day. I wasn’t at home and didn’t actually hear back from the doctor until about 5:30 p.m. I called and left her a message right when they opened at 9:00 this morning. Then I got ready and headed over to my mom’s house with the boys. I left Andrew over there to nap while Benjamin and I went to the OB/GYN. (He needed a checkup, LOL.)
All day I kept my cell phone with me (which, honestly, I do everyday anyway) but it never rang! UGH! At 2:30 I called back to be sure she was going to call me today b/c she doesn’t work on Tuesdays. They went and checked and said she would call me next when she got a break. Three hours later she called. She did apologize for it taking her all day. Mondays are always crazy at a doctor’s office, and she said that she wanted be sure we had time to talk.
Here’s what she said: Basically at this point, we are just going to wait and watch. She said typically when a baby has Infantile Spasms, the head goes down, the back arches, and the arms and legs twitch. An EEG is what is used to detect IS, and thankfully, the baby does *not* have to be seizing at that time. (There is a fairly consistent pattern on the EEG when a child has IS even if he/she is not seizing at the time; otherwise it would be awfully hard to detect.) An EEG has to be done outpatient (not at the ER), and b/c Benjamin’s so young and (b/c of his heart defects) is so susceptible to infection, she really wants to limit his exposure to the hospital at this point. Also, she’s never seen an EEG done on a child this young; she said it’s awfully hard b/c they need three readings: drowsy, awake, and asleep. It’s very difficult to force an infant to be awake and to force them asleep. Basically they sleep and are awake when they want to be. (A luxury I wish I had!)
She did say that a certain amount of leg and arm twitching (even if the child is not being startled) can be normal. But I do think that she wants us to get the EEG. We are just going to wait another month or two. She said that I need to watch if he does the head/back thing. If he does that (or if the leg/arm twitching becomes more severe or more consistent), then I need to call her so she can schedule the EEG. Since it is outpatient, she will have to schedule it, but she said she can do it in a day or two from when I call her.
She is not convinced that Benjamin has Infantile Spasms, but b/c there is *some* evidence (and b/c of the higher incidence of IS in Down syndrome children), she thinks we should go ahead and get the EEG in July or August, when he is a little older and when sickness is less likely to be widely present in the hospital.
I am fairly comfortable with all of this. I really do like our pediatrician; she is very knowledgeable about many things, and trusts me to be the mommy about lots of things.
Thanks for all your thoughts and prayers as we ride this rollercoaster!