Jenelle's Journey

Brett spoke with Dr. Phillips on the phone today, and he informed Brett that after reviewing all of the results from Jenelle's 24 hour Video EEG, he is now convinced that her diagnosis is Infantile Spasms. He wants Jenelle to start the steroid treatment as quickly soon as possible, and spoke to Brett about our treatment options. Our choices are either ACTH (steroid injections) or Topomax. He believes the ACTH is aggressive and has the best overall results, however unfortunately, it also has the worst side effects. If we start Jenelle on the ACTH, it is possible to do another EEG in a week, and we will know that quickly whether or not it is working. Though the side effects are risky, Brett and I feel we should give Jenelle every possible chance to beat this and we are inclined to go with the aggressive ACTH. We still are still deciding though.

Regardless of which drug we use, Jenelle's immune system will be decreased, and we will need to limit visitors at the house, and our activities during this time. Jenelle will be out of daycare for at least 7 weeks so that she is not exposed to any sickness at daycare. CHOC hospital encourages visitors, but they should be healthy, and use precautions so as not to expose Jenelle or other patients to any sickness. Dr. Phillips gave us a day to discuss our options, and because I had some more questions, we planned to talk the next day about our decision.