New plan of action!

After some gentle "prodding" I finally got a plan of action yesterday from UCLA. They are so busy and so under-budgeted that I'm sure its easy to get lost in their system. I'm still confident in their expertise, and am satisfied with our new instructions.

We are going to start a slow increase of Jenelle's Lamictal from 10mg a day to 60 mg a day. Dr. Shields recommended adding a pill every 3 days (until we reach 12 pills a day - yes, you read that correctly!) but I've decided to be extra cautious and will add a pill every 5th day. We initially had such a positive result on Lamictal (10 days seizure free) and she hasn't had any side effects so I feel if we are more cautious and conservative, all the better. After she is at 60mg a day, we are to give her 2 weeks, then call UCLA again to discuss weaning one of her other drugs (Topamax & Vigabatrin.) There was a new study published recently that says Lamictal has the best response and best developmental progress of any drug for Lennox Gastaut kids. Sounds encouraging, and as if we are on the right path! So, Jenelle got her first added pill last night with dinner - then she promptly turned into the "Party Queen of the Night" that she was when we initially started Lamictal. That insomnia effect is no fun for Mom and Dad!

Also, after emailing with some parents of our local Epilepsy Foundation COPE support group, I emailed The Brain Mapping Institute at Huntington Memorial in Pasadena as well as the Epilepsy Center at Johns Hopkins to see about getting into either Ketogenic Diet program. I know it is not an option at UCLA since learning their program is on hold, and she has been on the waiting list for a year now. According to a new LGS support group I joined, they say many of their kids have found wonderful results on Keto and Lamictal. I know the process of starting the diet will take lots of time, including time to get things authorized by insurance, so I'm sure the Lamictal increase won't hinder anything in us starting the diet. I'm told you can't be on Topamax when you start the diet, so maybe that is the drug we will try to wean first come mid-November when Jenelle is at her max dose of Lamictal.

And finally, Jenelle's wheelchair/stroller will be delivered on the morning of October 13! It will be such a nice convenience to have it as she is starting to get heavy to carry into school and daycare. I'm told it will have special straps so it can be secured to a school bus so she can join her class on field trips - and as I learned recently, it can also be strapped to the trams from the parking lot at Disneyland! ;)

Please continue to say special prayers for Jenelle these next 6 to 8 weeks during her drug increase. We hope she continues to tolerate the drug that is working so well, and that we won't have to discontinue it because of side effects. We hope that we can gain even better seizure control with the increase. Thanks for the prayers and support.

Blood test results

We are still waiting to hear back from UCLA about some questions. In the meantime I wanted to update everyone before the information was too old; Jenelle's blood test for Celiac Disease came back negative (as in she doesn't have it.) We knew it was a long shot. I sent an email last Thursday to UCLA to inquire about the "next step" in medications for Jenelle and am waiting for Dr. Shields to get back to me.

I've learned recently that my updates are helpful in more ways than one… in my last update I stated that I thought Jenelle was no better or worse on the new drug Lamictal. One of you responded (you know who you are ;) that I was incorrect in that Jenelle was more alert on the new drug Lamicatal, and that I should remember that she was too lethargic and doped up on Klonopin. It really means a lot to me to know that all of you are so involved in my updates, and that you feel so much a part of Jenelle's treatment. I'm thankful for that reminder, because
without it, I may have pushed for us to start another drug too soon!

In addition to her daily seizures, Jenelle had another grand mal (her first since August 1) last Friday. It lasted only a minute and took place during her nap at her new daycare. Our new daycare provider said it was frightening to witness but I'm glad she got to experience in a mild way what Jenelle's grand mals are like so she knows what to expect. She did not have one the rest of the weekend, so that is a good sign. I think we may start to wean Vigabatrin, but will wait for the official word from UCLA. The bummer news in response to last week's email to UCLA is that their Ketogenic Diet program is on hold again. I'm assuming it is due to budget related issues. It may be well into next year before her name comes up on the list again. In the meantime, we are happy with the results we are seeing in Jenelle. She is more alert and seems to be doing well back in her special school. Brett's Aunt mentioned the other day that it seems Jenelle is really developing more of a personality - she can be crabby at times and impatient. I notice that she is really watching things and responds to vocal prompts more easily. These are great signs of good things to come! Jenelle got her inserts recently, so be bought her first pair of shoes - "Disney Princess Shoes" from Target. I will post photos when I can.

Jack is doing fantastically well in his new daycare. They have a program where the kids get to pick out a special prize from a toy basket if they were good that day or did a special deed to make "butterfly" status. In his first 6 days, Jack made "butterfly" twice! He is very happy, and his happiness is reflected in his behavior as well which is great news for all of us. The potty training is going well too, and Jack is working on 10 days without accident. We promised him a fish aquarium if he went 30 days without an accident. I was impressed last night with what seems to be math - Jack saw he had 10 stickers on the chart and said, "Mommy, only 20 more days for a fish tank!" Bribes work, don't they? He is so smart and is also interested in dialing phone numbers. Fortunately, he can only handle 7 digit numbers as Nana's number is too many to press in a row. We wouldn't want any calls to Sweden now would we?

Thank you all for the continued prayers. We greatly appreciate it.

Heaven's new Angel

I learned this morning that Allie Scott passed away late yesterday. I still ask that you all send prayers for her parents Jenny & Andrew. I can't imagine how difficult this must be for them, but then they seem to be so strong and almost graceful in their journey with Allie. I hope that if that day comes for Jenelle while I'm still alive, that I will be just as graceful and strong as the Scotts. Many prayers for their family.

Pigtails!

By popular request - a photo of Jenelle's Pigtails!

Also, I'd like to ask you all to say a special prayer for a baby girl in Texas named Allie. I came across her website last week through a friend, and was truly touched by this family's ordeal. Allie has cancer, and they believe she is on her last days. I could sympathize and relate to so much that they have been through, even though our daughters are fighting completely different monsters. The words her mother Jenny writes on their website are so similar to ones I've written and/or to similar thoughts I've had. Their web site requests prayers for Allie, and I figure with her "stability" these days, we can spare a few. I told a priest once that when I pray, I normally don't pray for Jenelle's health - we have enough family and friends doing that. Usually I pray for my own strength to stay strong in our fight for Jenelle. So if you can spare another prayer in addition to a prayer for Allie, please include prayers of strength for Jenny & Andrew Scott as well. I'm sure they could use them, especially today.

Here is the link to their website: http://www.scotthousehold.com/

We are still waiting on word of Jenelle's blood test. I'll keep you posted when I get the results!

One year later...

We begin the month of September celebrating another month of "stability" for Jenelle. The Lamictal seems to help keep away the grand mals since we haven't seen once since August 1! Unfortunately, the Lamictal is no better/no worse in controlling Jenelle's everyday seizures. After first starting it we had a wonderful 10 days of no-seizures, but then they slowly came back to her regular amount of daily myoclonics and absence seizures. The seizures are still shorter in duration, which is an improvement, but we were getting that much control on Topamax alone. Her six week trial of Lamictal ends next week on the 14th, so I'm sure we'll be calling UCLA again for instructions on our next step (i.e. next drug!)

Jenelle's special school was closed the month of August and yesterday was her first day back. She was getting some therapy at home during August, but not as much as before. It will be nice to see her back in a routine again. They said she had an awesome first day and were happy to see her back. She is using her stander well, and we (Mommy & Daddy) need to find more time to get her in it! In addition to waving "bye bye" she will now wave "hi" in response to a hello. Again it is very subtle, be we are seeing her respond to different verbal commands, so it is encouraging. Jenelle's hair has now grown enough that I can put it in 2 teeny tiny pony tails on the top. Brett didn't like it much (he prefers the one pony tail) but Grandma thought it was adorable! I’m sure we'll be seeing huge strides in this month as Jenelle is now back in her infant development program. That therapy is so important to her right now.

Jenelle had another blood test done yesterday. I did some research a few weeks ago and came across something called "Celiac Disease". In particular, I found a newspaper article of a child diagnosed with Lennox Gastaut Syndrome that was later found to be Celiac Disease. From my reading, Celiac Disease is an auto-immune disease that is rather common (1 in 100 have it!) It is an allergy to Gluten. Some of the symptoms of Celiac Disease that seemed similar to Jenelle include development delay, uncontrolled seizures, red rash (which Jenelle sometimes gets on her cheeks and we haven’t found a doctor yet who knows what causes it), and gasey bowel movements and abdominal pain. She does not have the most obvious symptoms of this disease which include stunted growth and failure to thrive. I called Dr. Patel and mentioned the article I found – it seems once this child was placed on a "Gluten free diet", his seizures stopped and today (4 years later) he is a normal little boy. She has some patients with this disease and agreed that Jenelle didn’t have all the symptoms, but there was enough coincidence there to at least run a blood test. I asked her Neurologists if she had ever been tested for this, and they said no – "Celiac Disease is a GI issue, and we are only concerned with the brain!" ;) We aren’t getting our hopes up as this is a real long shot, but I guess when your left with nothing but hoping for a miracle, you'll look anywhere for it! I'll keep you all posted on the test results.

And not to dwell too much on the past, but as you noticed from the subject line, it has been a year since we got the call from her Neurologist about her Epilepsy diagnosis. I'm proud of the way we've handled things during this past year. A year ago we couldn't even pronounce words like "Hypsarythmia" (hips-a-rith-mia), "Vigabatrin" (Vi-gaba-trin), Ketogenic (key-toe-genic), or "Gastaut" (Gas-toe) - but now were are old pros. We know more about Epilepsy than we ever imagined we'd learn, and I feel we are at a point of acceptance about what we are dealing with, and how to fight it. Is Jenelle any better than she was a year ago? Not really, except in the small improvements we've seen over time. Has her prognosis changed? No. But we love her completely, and we accept her as our daughter with all the potential that goes with it. I found a sippy cup in the cabinet yesterday that was a baby gift for Jenelle that she still hasn't been able to use. It had her name on it and the meaning; "Jenelle means God's Precious Gift!" How appropriate!