Fun aquatherapy and a bad reaction to Neurontin...we hope

Aquatherapy

Yesterday was a good day. Daniel had a great time at aquatherapy. He insisted that mommy get in the water too. Off I went to buy a suit. Luckily, we were in the mall so I was back and changed in ten minutes.

Daniel loves to kick in the water and he really enjoyed playing chase with Jennilee. He came home exhausted and he slept for several hours!




With Jennilee fom MMI

Last night was not so great. Daniel had his second dose of Neurontin before he went to bed. At 3AM, he woke up crying and never went back to sleep. He cried throughout the night. This morning we went to get pancakes from McDonald's, his favorite. He said he wanted those rather than Mommy's. Just like Dad.

When I took him out to the car, he had a hard time holding onto me. He was limp and difficult to hold. In the car seat, he couldn't sit up and I noticed a rash on his cheek. He sat slumped forward the whole ride. His eyes wouldn't focus and his speech was slurred. He refused to eat pancakes and had a hard time grasping things.

Things didn't improve. We came home. Dan saw Daniel and was equally alarmed. We called the nurse practitioner. No response. Several hours went by and we panicked. Dan saw what he thought was a seizure. The RN texted back that she was at a memorial service and could call us tomorrow. She said to get in touch with the physician's assistant. We did. No response. Finally, we tracked down the business card with the neurologist's cell. She answered. She said that it may be the Neurontin and that it may be rapid progression. We are to stop the Neurontin for a week and then try again with a smaller dose.

Needless to say. we are worried. We knew Daniel would get to this point but we didn't expect it so soon. Fingers crossed, he gets better as the Neurontin passes out of his system.

600 pm update. Daniel is doing much better. He can sit up again and is alert. Fingers crossed he stays that way. We have also decided to go to the leukodystrophy clinic at Kennedy Krieger rather than remaining at the Children's Hospital of Pittsburgh.