Thursday, October 7, 2010

Home again, home again, jiggity jig!

First, I have to say thank you to everyone who reads here, posts comments, follows us on Facebook, etc. You guys are all awesome and you definitely keep my spirits up when I am stressed. THANK YOU! :)

We saw Dr. Lerner at UCLA. He was incredible. His personality is fabulous, he flirted with Emily, he was so good at explaining things, and I felt like he really wants to help. He asked me about a few tests that no one at CHOC would do, even when I asked about them. The first was that she has some strange patches of skin that are lighter than the rest of her skin. He asked me if anyone had ever mentioned them to me and I told him that CHOC told me it was a birthmark. He laughed and said "of course it is. But did they mention it could mean anything?" No. Never. So he went and got this fancy light (looked like a black light) and checked her whole body. She has quite a few places of abnormal skin tone. He wants to have her tested for Tuberous Sclerosis. He also wants to have her tested for an epilepsy gene, something I had never heard of.

The plan is that we are going to go inpatient at UCLA for a lot of testing. We are going to start with a 24 VEEG. If we catch enough seizures during the 24 hours we will go home. If not, we will be staying until we do. We are also doing a new brain MRI, and a PET scan. I have been asking about a PET scan for over a year and no one would listen to me. This was one of the first things Dr. Lerner asked if she has had done. I am SO glad he is being proactive!

His hope is that we can identify for sure that all of her seizures are coming from the same place. Or that at least MOST of her seizures are coming from the same place. The most recent EEG's showed spikes all originating in the left temporal lobe. If we can isolate the seizure location, then we can hopefully do a resection and remove that piece of brain. If they are not localized, or the area of the brain is not okay to remove, we will do a vagus nerve stimulator.

Hopefully the authorizations for these things will be done within a week or two and we will get in to UCLA for these tests in November. In the meantime, he gave me a new schedule on how to increase her Mysoline better. He said to contact him with any questions or concerns. He mostly does email contact with parents, which is AWESOME. I love that. I wish all doctors would let you email them!

It was a great appointment. I really liked the doctor, I felt like he really listened to me and my concerns, and is going to be a huge help in Emily's care. :)

Please help us raise money for our Children's Hospital! Donate to Princess Emily's team for the CHOC Walk! click hereAny amount helps, even a few dollars. :) Thank you!

13 comments:

SECRET PEPPER PERSON: said...

I am tickled that Emily is finally in the right place! The little friend my son was playing ball with today on my blog at his infusion has tuberous sclerosis. And how wonderful the new doctor e-mails. My new neurologist does as well. What a difference to have someone who not only cares but is accessible as well! I am so happy for you all!

Junior said...

Such wonderful news, this doc sounds so much like Junior's neuro and you sound like I did after our first visit with him. A big infusion of HOPE
Praying that he will find the answers to help Emily.
Hugs

Alison said...

Sounds like a fantastic appointment with a great doctor. I hope you can get to the bottom of what is going on with the seizures.

Michelle and Sean said...

I am so happy that he was able to get some things in place to hopefully help Emily!! Its so nice when you finally get someone who listens!!

Good luck with everything and I can't wait to hear how things progress with the meds and then after the testing!!

The Fluck Family said...

sounds like you have found a great place for detailed care. i hope this means some answers for you!

Zoey's mom said...

So relieved that your experience was a fabulous one.Ours has always been but sometimes I get nervous that I talk something up and someone else so does not walk away with the warm fuzzy feelings we have had.

We did all the same testing there,that you are doing,and as daunting as it sounds,we truly were so impressed.At the point we did Zoey's,she was 14 months old and had been in and out of CHLA,our home away from home.I do love CHLA but their neurology department was always a little lacking,especially when our dr.left for Northwestern.We feel so blessed that before he left that he pulled the strings he did and got us into UCLA.

Okay,rambled enough.Really so pleased with the way the day went and we anxiously will journey with you as you travel towards answers.

Eden said...

what a great appointment, possibly even worth waiting for (although waiting always sucks). Glad it went well and he is willing to go in search of problems and solutions.

Becky said...

Wow! Sounds like you might finally get some answers. I'm so happy for you!

The VW's said...

Sounds like a great doctor! It must feel good to have someone being proactive for you and your sweet girl! Maybe she will be able to get rid of her seizures for good.....this would be AWESOME! Love and Hugs!!!

Sarah said...

I'm so happy that you have a great doctor treating her, finally and that you have a plan set in motion. I read through your last couple entries. Man the past few weeks have been so rough for her! The seizures are so heartbreaking. Thank you for updating

Debbie said...

JUST GOT CAUGHT UP ON THE LATEST (SORRY FOR MY ABSENCE IN THE BLOGGING WORLD)

THRILLED ABOUT YOUR RECENT APPT. AND ON THE ROAD TO GETTING ANSWERS.

I REMEMBER LIKE YESTERDAY. WHEN WE WERE FIRST TOLD HE WAS HAVING INFANTILE SPASMS, AND THEY BROUGHT OUT THE LIGHT THING AND TURNED OFF THE ROOM LIGHT LOOKING OVER HIS BODY FOR T.S.....BAD MEMORIES...THE FIRST MENTION OF SEIZURES AND A SICK BABY, NO T.S. THOUGH.

YOU GUYS ARE IN MY THOUGHTS...

DEB

Araceli Sandoval (Brianna and Hailey's mommy) said...

I love the pictures you posted! She always has the most beautiful smile ever!
Ok so I am super super upset! I totally forgot about the CHOC annual walk at Disneyland! We are pass holders and we got a reminder a while ago and I totally forgot about it! Brianna's life has been saved by CHOC coutless times and I wish I could do this to help them.
I just dont know how I can get 6 people (well the ppl isnt the problem) the problem is to have each raise $50... I can probably donate out of pocket $100 for my husband and I but where would I get the other $200? Any ideas I need help if its not too late to join I want to do it so bad. I had the shirts in mind and all "Team Monkey Bri" ugh! HELP?! I want to do it so bad we live in Anaheim no excuse:( email me at araceli.sandoval4@gmail.com if you have any suggestions.

Jenny said...

awesome awesome awesome! It makes such a HUGE difference when you find the right doctor doesn't it? Oh, I'm just excited for you...though the road ahead may still be a little nervewracking, it's great to know that things are going in the right direction! Yippee!!!