The neurologist called later in the afternoon, and basically said he thinks Jude's cries are another part of his seizures. Therefore, he increased his topamax... on top of the pheno, and we tried that tonight for the first time. I have said before that I have a feeling topamax relates to mag sulfate. Mag sulfate is the drug they give many mothers that go into early labor. The only relation I can give you to mag sulfate... is to think of Juliet's herbal disguised demise in William Shakespeare's play, and then you can properly imagine the effects of this drug. It basically renders you helpless. Tonight Jude can barely suck on his paci...it must be held in his mouth. It seems his breathing is rattled, but only from relaxation. It's worrisome, and will probably keep me awake tonight. Although, on the other hand I could tell he tried to start a seizure........tried. His body did not allow him to go into a full blown seizure, so for the first time I felt the meds may be working.......but at what cost. So again it's a trial and error road that we will travel down.
I do have to report that prior to the meds Jude actually FOLLOWED bubbles tonight!!! I sang his gymboree song to him since he missed out on the class from being asleep, and he followed the bubbles I blew at him with his eyes. That is a HUGE task for Jude, and he even seemed to light up when they were blown at him His eyes actually darted in different directions catching small glimpses of the glycerin bubbles. He also displayed a half smile when I walked in talking to him from work. He again tried to smile when I held him talking to him, and when Emily played with him. So he is trying folks, and Em is helping :)