Sunday, March 15, 2009


So, we're home again, but life is not going back to normal. Jacob has a lot of involuntary movements varying in intensity from day to day. They are very frustrating for him and the rest of us. Some days, he can't hold on to anything in his right hand, some days he simply won't roll any more. To see Jacob loose skills he so enjoyed before is probably the hardest part of being Jacob's mom. We never know if he will regain them or not. Only time can tell.
Yesterday we noticed in the morning that everything was not ok. Jacob has an ear infection, but it shouldn't cause him a lot of pain due to him being on antibiotics. Throughout the day, he had spells where he was very agitated and slammed his legs and arms. We didn't really know why they happened, but could see that some were triggered by noise. In the evening, we had Stevens over for dinner. The episodes came as often as every 20-30 minutes, and towards the end of the dinner I had to take Jacob to the ER. I hope the rest of the evening was still fun!
The ER at Children's is a zoo on a Saturday evening. The line to even get to admission is running outside the doors. Amazingly, Jacob was in the trauma unit within minutes. The head doctor told me that Jacob now has V.I.P. status in the ER. As soon as his name shows up on the computer, he will be taken back to the trauma unit. There are probably more exciting places to have V.I.P. status, but for Jacob this is probably THE place! Neurology does think that he has a new type of seizure, and increased 2 of his seizure meds once again. We were home again by midnight.
Today, Jacob seems a bit better. We can see that the spells can be triggered by noise. We can't use the vacuum cleaner or kitchen mixer when Jacob is on the same floor. He will grind his teeth, turn red, get agitated and slam his legs and arms. The hair dryer works fine, so we'll have to figure out what noises work and don't work for him moving forward.
Jacob's PCP told us on Friday that Jacob has had 7 hospitalizations totaling 41 days, 9 ER visits, 1 surgery, 2 spinal taps, 1 MRI and 2 EEGs in the last 90 days. Not a great track record.
We'll see Jacob's neurologists tomorrow and Friday and are hoping they can help us to figure out what the latest spells truly are. Are they seizures or not?
We'll keep you posted. - Maria.

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