Wednesday, July 25, 2012

No Photos Please...

Tried to get a photo of our girl during dinner last night, but she just wouldn't have it.  Still no "significant" BM - some relief from an enema, but still pretty constipated.  In response to hearing about Jenelle's constipation, Big Brother JD said,  "Mom, when Jenelle finally drops one, it's going to stink up the whole house!"  "Drops one?" - Seriously?  Never heard that before!  At least we still have our sense of humor!

Continued prayers for Jenelle please, that things start to pass soon!

Tuesday, July 24, 2012

All Go for Onfi!

Sometimes it takes leaving a message where you threaten to page the doctor "911" to get things done.  Well, sort of...After more than two weeks with no communication between UCLA and our pharmacy to get the authorization needed for Onfi (Clobazam), I left a message on the "UCLA system" last Thursday stating that if they couldn't get it done, I would be paging the Doctor to have him get it done.  Because seriously, two weeks of continued seizures without being able to start a new medication simply because it needs authorization should be considered an emergency!

As luck would have it, the next morning I got a call from Dr. Shield's office.  Immediately, I explained how I had been in contact with our pharmacy, and that the pharmacy swears they've faxed the forms 3 times to UCLA's number, and that I was really getting desperate to put Jenelle on this new drug and all the pharmacy needed was the Diagnosis Code, etc.  Then there was silence on the other end and I worried that I had finally pissed them off and they were not going to be nice to me anymore.  "Hello, did I lose you?" I said, and the women on the other end of the line said, "Actually Mrs. Curran, I don't really handle that, and I was calling you about the school forms Jenelle's nurse faxed to us, but, give me the number for your pharmacy, and the pharmacist's name, and I'll see if I can help!"  Sweet Angel from God!  Not only did we finally get Jenelle's medical instructions in place for school year, this woman called the pharmacy, approved Onfi, and gave them the authorization code to approve payment by Medi-Cal of the Non-Generic form of Felbatol!  All of my problems fixed in one call!  Although the run around and formality of the process can be frustrating at times; I absolutely love UCLA for moments like this.  The dedication and team attitude they have towards the care of their patients is above and beyond job description. 

So, Jenelle started Onfi on Saturday.  Side effects include constipation and drooling.  Oh Joy!  Immediately I doubled her dose of Miralax because Jenelle hadn't pooped since Thursday evening.  On Sunday, the boys had a baseball tournament in Pomona and we had another hot weekend.  Jenelle was starting to act very lethargic so I opted to stay home with her on Sunday.  It was rather relaxing day as she and I took naps all day.  Unfortunately, not poop!  Monday morning, it took a lot to wake Jenelle up for the 7:30 am bus, and even more effort to get her to walk onto the bus.  In the back of my mind I also knew we still hadn't had a BM, but I was hoping for the best. 

Around 10:30 am, the school nurse called and was very concerned about Jenelle.  She had had a pretty rough morning trying to get comfortable and was mostly sleeping when she wasn't crying.  The nurse also said she thought Jenelle might have a tummy ache because she had trouble walking as she was stooped over.  I then explained the constipation side effect of Onfi, and we both agreed Jenelle would be more comfortable at home.  Daddy came to the rescue and picked her up from school while Grandma Curran stopped by later to administer an adult sized enema.  Brett says she slept most of the day, and when I got home around 6:30- still no poop!  Around 8:30 pm, I gave Jenelle another adult sized enema where she finally had some relief with a small BM.  Unfortunately, she still has some pooping to do! 

The nurse reported this morning that Jenelle was in better spirits today, and was much more alert.  I tried to remind Jenelle that Elmo says "Everybody Poops!" but I don't think she gets it just yet.  As a precaution, I've increased her water intake by giving her water by syringe via g-tube to help get things moving.  I'm confident, "this too shall pass!"

Seizure wise, things are good, but it's still too early to tell with the new drug.  Please keep us in your prayers that things get moving soon for Jenelle.  Thanks, and I'll keep you posted!

Thursday, July 12, 2012

Waiting... on insurance

Just a quick update.  Jenelle has not started the new medication yet.  We are waiting for "insurance approval" but should get approved soon.  Given this new drug wasn't FDA approved until this year, this delay wasn't too surprising.

Monday, Jenelle will be seeing a new pediatrician (or new to us).  Dr. Sangeeta Patel who was Jenelle's doctor since birth stopped taking Cal-Optima (MediCal) and with a lot of Jenelle's medical needs like diapers and wheelchairs, etc. only being covered by MediCal, we were forced to switch to another doctor who is taking Cal-Optima/MediCal.  The appointment is to check on her scoliosis, but obviously we'll be introducing ourselves to a whole new medical team.  We are still in the same "medical group" HMO wise, so all of her existing authorizations to specialists like Dr. Idries and Dr. Shields will remain in place.  Ah the bliss you find in jumping through the hoops of the health care industry.

In January, I told you about my own personal issue with my being borderline Diabetic.  I had labs done in December that had my triglycerides up way too high.  I told my doctor to give me time to get on a diet and try to fix it on my own rather than start medication.  I did really well at first with a change in diet - I lost 10 pounds and felt better.  Then Easter came around and I cheated by eating candy and simply fell off the wagon.  Worse, I gained all the weight back! Unfortunately, my recent follow up lab work showed the triglycerides had INCREASED (from 290 to 380!)  I met with my doctor this morning and she laid down the law - lose 30 pounds, exercise and NO CARBS. 

As I left her office, I threw away the left over pizza I brought for lunch and went to Gelson's by my office and purchased a Turkey Spinach Pinwheel.  I will change my diet for the better, I will lose the weight and I will not need Diabetes medication!  This is my mantra!  I see my doctor again in 3 months.

That is all for now - I'll keep you posted.

Monday, July 02, 2012

New Meds and New Problems

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!