Friday, November 19, 2004

Pre-Thanksgiving Update

Jenelle had her IFSP (Individual Family Service Plan) meeting with Regional Center last week (a bi-annual meeting to discuss services and progress) and there is not much new to report. Jenelle's Physical Therapist and Therapists at the Blind Children's Learning Center all submitted evaluations and Jenelle is still at a developmental level of a 3 - 4 month old. She has scattered skills that reach even to the 18 months mark (like waving, etc.) but according to the "charts" you have to master all the qualifications of a certain level before you move up a level. It used to depress me to hear all the things she "couldn't" do, but somehow over time you learn to see her accomplishments in a different way, rather than on the charts. Jenelle is spending 2 half days a week at Blind Children's and we are hoping to increase it to 3 half days by January. I spoke with her teachers after they submitted her evaluation, and we all agree she would benefit from the extra therapy.

Jenelle is still having daily seizures, including some long ones that last many minutes. I spoke to Dr. Shields today about this and we decided to keep her on Lamictal, and take her off Vigabatrin. This wean will take 3 weeks. It seems all 3 of her medications aren't working and we certainly can't put her on a 4th medication. It is frustrating to see her seizing while on 3 medications, but I realize the importance of taking things one step at a time. She is somewhat stable on the Lamictal and at least she isn't having grand mals as frequently as before, so we'll take this time to get her off the other medications that aren't working before we move onto a new one.

As far as my dealings with the HMO appeal are concerned - I got a call last Friday wherein they "approved" Jenelle to see Dr. Shields at UCLA about UCLA's Ketogenic program! (sense my sarcasm?) I then informed the woman that Jenelle was already under the treatment of Dr. Shields, and that we'd been on their waiting list for over a year now, and that their program was closed to new patients. She then assured me that she would look into the program in Pasadena. I haven't heard anything since. As for the Metabolic and Mitochondrial Specialist at UCSD (whom I had voluntarily given up on seeing) - they called me yesterday to see if I'd be interested in having Dr. Haas review Jenelle's medical records. If upon review the doctor wants to see Jenelle, we can make arrangements for a "one time" appointment for a $160.00 "deposit." At the appointment, the doctor would evaluate Jenelle and would make written recommendations for tests that we could give to our Pediatrician to be done through her office (thus through our HMO!) I sent copies of her records last night and will check on them in a few weeks. In addition, I decided to file an appeal for UCSD as well - it can't hurt at this point!

And finally, Jenelle said the words I've been longing to hear all of her life… "mum….muh!" When she first said it, I was on the phone with my sister so she got to verify that indeed we heard the words correctly! She said it four times in a row, and once again the following morning, and again two nights ago in front of Brett. I honestly don't think she has made the connection that I am "mum muh" or that she is saying it with any meaningful purpose towards me, but it is a wonderful sound none the less. :) Now we need to work on "Daddy!" Also last Wednesday, her teacher informed me that Jenelle sat up in a "side sitting" position unassisted for 20 seconds! This is great improvement - Let's hope this strength continues so that she can sit up by Christmas!

Have a Happy Thanksgiving and thank you for the continued prayers! I'll keep you posted!

Thursday, November 04, 2004

Lamictal decrease worked!

So far this week it seems Jenelle has returned to some better seizure control. As I last reported, Jenelle's seizures were increasing significantly in duration and I put in a call to UCLA. We decreased her Lamictal dose by half on Monday, October 25 and she is currently taking 20mg a day. In the days that followed that decrease, she continued to have long seizures (her longest being over 5 minutes, with a 30 second break only to go into another 3 minute seizure almost prompting me to use Diastat!) Also, her sleeping habits grew worse in that she pretty much slept in 4 hour intervals. Not fun! Rather than call UCLA again last Friday, I decided to give her the weekend to watch her more carefully. After Friday, it seemed that her seizures decreased and returned to their "normal" duration. This week has been really good and we've seen very few seizures! I will call Dr. Shields on Monday to find out the next step. I hope if she can maintain this control on the reduced dose of Lamictal, we can wean her off either Vigabatrin or Topamax. I'll keep ya'll posted!

Also last week, we received the usual HMO denial letter regarding our request to see Dr. Sutherling in Pasadena for the Ketogenic Diet and Dr. Haas in San Diego for the metabolic testing. It was rather comical - in denying our visit to these doctors, the did however approve a visit to the neurologist she is already seeing! Boy, won't that come in handy! ;) Yesterday I filed an appeal for the Dr. Sutherling denial. I figured I might have better luck fighting for one and not both at the same time. Also there are no other Ketogenic Diet Programs in our area (other than UCLA which is closed to new patients) but there are other metabolic doctors… anyway, we'll know within 30 days. Please send us positive thoughts and prayers that we can get the authorization! Also, I sent her application to Dr. Sutherling's program last Monday, but we have yet to hear from them as well.

The kids are doing well and had a great night on Halloween. Jenelle enjoyed the fresh night air dressed as a bunny, and Jack enjoyed running to each house in his Spiderman costume. At first he just knocked on the door then ran to the next house, until he realized they were giving out candy when they answered the door! He soon got the hang of it. Oh and in case you were curious, we lost 3 fish (Nemo, Mickey and Minnie!) Because there was a 14 day return policy, I was keeping them in the "freezer" so I could return them on the weekend. When the third fish died, I tried to not let Jack see me fish it out of the tank. When he noticed only one fish left in the bowl, he asked me where Mickey was. I told him he had died, and Jack responded, "That's OK Mommy - Is he in the freezer with the Otter Pops?" The dead fish have been replaced with Mickey #2, Goldie (the golden algae eater) and Rainbow Fish #1, #2, #3, #4 and #5 (a school of neons that are too similar to name individually, so Jack just named each of them Rainbow Fish! ;) Too funny!

That is all for now! Thank you for the positive thoughts, prayers and support - we greatly appreciate it!