Home from UCLA

We are home from UCLA and our trip was shorter than anticipated. The short story is, they think that Jenelle is not going to be a candidate for surgery. While heartbreaking, we knew this was a strong possibility. We were very impressed with UCLA and their "team" approach. We were admitted on Wednesday morning and Jenelle immediately gave them quite a performance. She started seizing about 2 minutes after they applied the EEG monitor. She had many seizures throughout the course of the day.

Wednesday afternoon we were visited by Dr. Shields and his nurse Sue Yudovin. It was wonderful to see them, and he check out Jenelle and commented that her tone was much improved since he'd last seen her 5 weeks ago. We told them we were already recording seizures and he thought that was great. They told us they would know quicker if surgery wasn't an option, than they would if it were. Later that day, we were visited by the "Team" which included about 8 to 10 med students, doctors, residents, attending, etc. Just like on TV, they swarmed over Jenelle, asked questions and made observations. I just stood in a corner in awe. They told us they already had a lot of seizure information on the EEG, but would continue through the night to see what they could get.

At 3:30 a.m. on Thursday, Jenelle had a grand mal that lasted approximately 7 minutes. This is the first one she has had for over 5 weeks and since starting Klonopin. It was also the longest one she's ever had. We had to use oxygen because her lips were turning blue- if we'd been at home, I'm sure we would have called 911. She seized for another hour after the grand mal and if they weren't recording the information, we'd probably would have medicated her with emergency meds (valium) to stop it. Oh, and all of this seizure activity was happening while Jenelle was still on her full meds. They were only intending to stop her "cold turkey" if she wasn't giving them anything, so like I said, she really performed well. Many other parents we know often spend days in the hospital and never record a single seizure on an EEG. We not only got her regular ones, but a grand mal as well! If anything, I think prayers were answered in that we have no doubt that UCLA got to see all of Jenelle's different seizures, so in essence, they gave us their opinion based on all the information, which in itself is a blessing. Or, as Brett says... "we need to tell everyone to stop praying for seizures because they over did it!" ;)

Overall they got a lot of information from the EEG. She is still having infantile spasms, myoclonics, tonic/clonics as well as EEG patterns that resemble seizures but are not (basically abnormal brain waves). She is not a candidate for surgery because there was no "focal point" to her seizures, and most likely at this point, she is moving into Lennox Gassteau Syndrome (LGS.) As some of you may recall, LGS is the more "devastating" type of Epilepsy, where most end up severely mentally retarded, or have a short life expectancy.
They ran the PET scan on Thursday, but not the MRI as we had a conflict in finding (or rather in keeping) the anestheologist. We have to go back up to do that as an outpatient in the next week or so, and we will return in a month to see Dr. Shields. Even though they are confident from the EEG that surgery is not an option, they want to do the entire work up to see what they can recommend. There are still different drugs we haven't tried, and of course, the Ketogenic diet may still be an option.

Jack took our leaving for "the hospital" very hard this time. When we left him at daycare on Wednesday, he cried hysterically. The night before I told him we had to take Jenelle to the hospital, and he asked, "where am I going to stay?" He's been temperamental, but overall is handling this well. We spent most of today spending special time with just him.

Brett and I are doing OK. We not sure what our next step will be as far as treatment, and we are somewhat disappointed. We truly appreciate all of your prayers and support during this time. You have no idea how much it means to us.

I'll update when we have some new results.

Sorry I haven't updated before now. We are set to go to UCLA for admission at 10:00 a.m. Wednesday April 28, 2004 for testing. Things have been hectic trying to make arrangements for this as well as Brett and I managing work. We will keep you all posted as soon as we have email access, or anything to report. Thank you for keeping us in your thoughts and prayers!

Brett just spoke with the medical director of Jenelle's insurance medical group, and all of the authorizations for UCLA have been approved! We are scheduled to go to UCLA on Wednesday, April 28, 2004 for her MRI, Video EEG and PET scan. According to UCLA, it will take about 3 months till they do the surgery if they determine she is a candidate. We estimate we'll be at UCLA for 4 or 5 days, depending on how long the tests take. Jenelle must be admitted because they plan to take her off her seizure meds "cold turkey" in order to induce seizures. She needs to be monitored so she doesn't go into status.

Please keep us in your prayers during that time. Thank you so much for your support!

Well, its been a little over two weeks since we saw Dr. Shields, and we haven't heard from UCLA since. Apparently their contact person who works with insurance and makes arrangements for tests has been on vacation. Apart from that, we are now in the midst of a battle with our insurance over allowing Jenelle to go to UCLA. Initially when we put in the authorization request for our second visit to Dr. Shields, they denied it. With some quick phone calls, in which I was transferred four times, I spoke directly to the Medical Director ( a doctor himself) of Jenelle's medical group and explained our situation. Apparently for whatever reason, her medical group wants us to go to UC Irvine rather than UCLA. We've heard that the Pediatric Neurology department at UC Irvine is actually dissolving, so we have no idea why other than distance they are sending us there. Once I spoke to the Medical Director, he said he personally knew Dr. Shields, and we needed to see him, so he reversed the initial denial the day before out appointment. A couple of days later, I got a letter from her medical group saying the authorization for our visit to UCLA was again denied. I am in the process of calling them daily to correct this - I'll keep you posted, but I'm confident we'll win out in the end.

We saw Dr. Phillips again last Friday and it was a rather pleasant and encouraging visit. He said he didn’t think Jenelle would make a good surgery candidate, but also thought it was an avenue we should explore. Since my last update, we heard from some friends that Dr. Michael Muhonen at CHOC is apparently a national renown brain surgeon. In light of our insurance issues, I asked Dr. Phillips if these tests could be done at CHOC instead with Dr. Muhonen doing the surgery, and he said, "He's the best, but he doesn’t do this type of surgery." Basically, according to Dr. Phillips, UCLA is the only place that does this surgery (for generalized seizures) and if it were his child, he would only go to UCLA as they were the best. He said he would step back at this point and let UCLA take the lead from here, but wanted to be kept informed, especially before she has any surgery. He said he hasn't given up on her, and neither have we. I feel more confident in our fight against insurance, especially in knowing that we must go to UCLA because the same thing cannot be done anywhere else.

On a lighter note, Jenelle seems to be improving with her fine motor skills, but at a stand still in her gross motor skills. She is making more eye contact, using her right hand more and is generally a happier baby. We are still seeing daily myoclonic seizures, but thankfully have not seen a grand mal since starting Klonopin. Last week, I was drying Jenelle off after her bath, and Jack was helping me. He started to play "peek a boo" with Jenelle and was trying to make her laugh. It worked and he got the biggest belly laughs and the best smiles from Jenelle. As she was laughing, she was making eye contact with him and really participating. At times she would pause in her laughter to wait for him to sneak up on her again. It was so wonderful to see them interact together. Jack looked up at me and said, "Mommy, I’m making her laugh!"… he must have really needed that. So did we.

I will keep you posted as the UCLA saga goes on. Please send positive thoughts and prayers that the dispute with insurance resolves quickly, and we can get up to UCLA soon. Thanks for the support!