Did I really not update at all in June? I was planning to share the photos of the end of school for the kids, but I guess it slipped my mind. June didn't go by fast enough as Jenelle's seizures seemed to get worse as each day went by. Today we met with Dr. Shields and finally we got a new plan, a new prescription and an answer to a new problem.
All four of us made the trip up to UCLA today for Jenelle's follow up. I packed a picnic of sandwiches, chips, bagels, cheese and Nutella - Jenelle's new favorite! Dr. Shields was on time and spent a lot of time with us. The last two months, Jenelle's seizures have increased dramatically - 1 to 3 grand mals a week, at least. On the last day of school and during JD's 5th Grade Promotion ceremony, Jenelle had 3 grand mals lasting over 3 minutes. Her first seizure that day was early in the morning, and she had missed her meds. After the third one, I simply gave her Diastat in stead of her her missed meds. It worked, thankfully.
Recently, Jenelle had a physical with her regular doctor, and her weight increased by 7 pounds! Originally, I had thought that was the culprit, but Dr. Shields' records showed only a 2 1/2 pound increase, so he didn't think the weight increase was the problem causing the increased seizures. Later I had realized, it had been over a year since Jenelle was seen by her pediatrician, and 6 months since seeing Dr. Shields. Makes sense.
So, the new plan: We are adding a new drug, the one Dr. Shields had mentioned in November, but was still not approved by the FDA. Its called Clobazam, and trials have shown that it tremendously helps patients with Jenelle's seizure disorder type (Lennox Gaustaut Syndrome.) We will slowly increase the dose each week and stop once we reach the max dose or before the max dose if we see seizure improvement. Nothing new there, we've done start before. Once we are on Clobazam, if it works, we'll start to try to wean her off Felbatol. That is the seizure plan for now.
Oh yes, new problems. A week ago, I took Jenelle for her cheerleading uniform fitting. This year, the league is going to purchase shoes, so Jenelle's foot was sized. I knew she needed new shoes, but was rather surprised by her shoe size, or rather "sizes." Jenelle's right foot is a size 1 1/2 womens, and her left foot is a childrens size 13. Yes, one and a half size difference. I realize this is not uncommon, and I know lots of people with different shoe sizes fore each feet. What made this information more curious is that a few days later, Jenelle got her new ankle support for her right foot.
Around the start of baseball season, we noticed that Jenelle was turning out her right foot, and walking almost completely on her ankle. It looked painful, so I put in a request for new AFOs since she hadn't been wearing them for over a year. When we went to get casted for the AFO, the specialists felt that Jenelle would do better with an ankle brace, similar to one worn by a basketball player. He casted her foot in the same matter for AFOs and order a special fitting, lace up ankle support. It arrived last Friday, and I took Jenelle for the initial fitting.
After strapping on the support, the specialist had Jenelle walk down the hall to see if it helped. We then realized that she was walking almost drunk like and leaning to her right. The specialist immediately noticed that her left leg was shorter! After trying different inserts, he determined that Jenelle's left leg is a good 3/4 inch shorter than the right. With the proper lift insert, she stands perfectly and walks really, really well. Our specialist recommended we see her pediatrician to check on possibly scolosis. Jenelle's had noted scolosis the last two years, but not significant enough to take any action.
Today, I mentioned this new "problem" to Dr. Shields. Before I could mention scolosis, Dr. Shields compared Jenelle's hands and noticed that her left hand is much smaller than her right. Jenelle has always had weakness on her left side, and we have just assumed it was a result of whatever "damage" may have occurred on the right side of her brain in utero. Dr. Shields called up Jenelle's last MRI and PET scan from April 2008 to confirm. That PET scan showed signs of "slower metabolic absorbtion" in the right frontal lobe. Because of this, Jenelle's left side of her body is not growing as fast. Brett asked if there was something we could do to stimulate growth in the right side, and unfortunately, there is no way to cure it.
This "new problem" really isn't earth shattering (or rather, life threatening) and doesn't change anything in Jenelle's treatments; however as she gets older, we may run into some problems with her mobility if the other side doesn't catch up. As always, only time will tell. In the meantime, I'm still going to check out her scolosis to make sure that hasn't gotten worse.
After her appointment, we took the time to walk on campus with Jenelle and JD. Brett and JD climbed the stairs of a parking structure to look onto the football practice field, and eventually we found our way to the UCLA Hall of Fame. JD and Brett were mezmerized with the John Wooden Den (a replica of his home office) and we counted each and every one of UCLA's 108 NCAA Championship trophies. I was very proud to find an old photos and videos of my cousin, Laurie Jones, who played on the 1990 and 1991 UCLA Women's Volleyball NCAA Championship team. When I pointed out her photo, JD said, "That's Abby and Tessa's Mom! She's very young!"
In all, it was a great day. I'll definitely update more as we add in the new drug. Here's hoping we get back that seizure control we once enjoyed so long ago! Thanks for continued thoughts and prayers. I'll keep you posted!
Monday, July 02, 2012
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Hi, My name is conny and my daughter´s name is Aenne. She is diagnosed with Lennox-Gatsaut syndrome and i really know where you´re going through!
Aenne is 10 Years old an she has daily seizures. Her meds: Felbatol, rufinamide, valproat, ethosuximid and cortison, but she´s not seizure free.
Many kind regards from Germany
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