Jenelle and I spent the day together yesterday seeing our specialists at UCLA. It was literally a miracle to get both appointments scheduled for the same day. Thankfully, we were able to get up there and back without any major delays.
Jenelle had her appointment first with Dr. Shields. Of course, we had lots to discuss with her two recent trips to the ER for seizures. Last week, another Mom from my epilepsy support group e-mailed everyone to report that her daughter (who has LGS and is similar in age to Jenelle) had a follow up at UCLA and they thought she might be having infantile spasms again. I thought this update was interesting, because Jenelle's seizures last Saturday reminded me of the seizures she had when she was having infantile spasms more than 6 years ago.
Infantile spasms is a very severe form of epilepsy that needs to be treated quickly. It usually occurs in infants, ages 6 months to 2 years. If you recall, Jenelle was first diagnosed with infantile spasms at age 10 months. She was having over 300+ seizures a day. We first tried a steroid treatment ACTH, but ultimately used the drug Vigabatrin (obtained from Canada because it was not FDA approved) to help her spasms go away. If untreated, infantile spasms can cause brain damage, and further regression in development.
I was so thankful this Mom had sent the timely update, because I thought it was impossible to have infantile spasms again, until I asked Dr. Shields if it was possible. He said it is possible to have "epileptic spasms" and he wants a 24 hour video EEG to see if Jenelle's brain waves demonstrate the typical hypsarythmia pattern associated with infantile spasms/epileptic spasms has returned. If it has, Jenelle will have to go back on Vigabatrin. The good news in that is that Vigabatrin is now FDA approved, and we can get it here without the trouble of ordering it from Canada and paying for it out of pocket.
If the EEG does not confirm epileptic spasms, Dr. Shields wants to add a new drug to Jenelle's anti-seizure medications called Vimpat. Jenelle is already at the maximum dose of Felbatol, so he thinks its a good idea to add on another drug that we may be able to switch to completely. Either way, Jenelle is having more seizures so we need to figure out what is going on and made a decision on the best course of action. This will be a slow process as we need to do one thing at a time. First we need to determine if Jenelle is having spasms again. The Video EEG will hopefully give us some answers.
As always, Dr. Shields was very happy to see Jenelle's progress. She was in an excellent mood and was very happy. He was so pleased to see her act so different.
After seeing Dr. Shields, I had a follow up with Dr. Territo. All of my blood levels and counts are good and things remain good for me. This month will be one year since my awful reaction to my last dose of IV Chemo - or as I told Dr. Territo, one year since I almost died! She was also excited that in August, it will be one year on maintenance chemo, with one year down and one to go!
This weekend, Brett and I hosted the semi-annual Texas Hold'em Poker Tournament at our home and raised $515 for the Leukemia Lymphoma Society to help support Brett's cousin Bridget participate in the Team In Training Rock N Roll Marathon in San Diego! Good luck Bridget! If you would like to make a donation for Bridget, please check out her donation page by clicking here.
That is all for now. Thanks for the continued thoughts and prayers. I'll keep you posted!