From the "diagnosis" to present day

Since Christina first saw the neurologist in September 2010, until now, she has made some AMAZING progress. That day in September marked a new beginning for our family. Autism, Landau-Kleffner Syndome, or whatever it is...it doesn't matter because Christina is showing me that she wants to grow, she wants to learn, and she wants to be like "normal" children. The drive in such a small child gives me so much inspiration. It really makes you stop and think of all of the things that "normal" people take for granted...like talking and being perfectly capable of expressing our needs and wants. When Christina wants something, I can see it on her face that she knows exactly what it is, but she cannot tell me most times and that is when she becomes frustrated. I sat and thought about this for a while, and remembered when I spent three years in Japan. I did not know Japanese and I remember feeling completely helpless trying to communicate with the locals. I often think of my time spent in Japan and the frustration that I felt when it came to communication with human beings and I have to say, I know exactly how she feels. 


Anyway, I want to share with everyone what we have been through medically with Christina. 


First, she was tested for certain genetic disorders such as Fragile X and Angelmans Syndrome, which all came back negative. Since there is not a specific blood test for Autism, the neurologist wanted to have an EEG test done on her. The point of this test was to see if Christina was having seizures, specifically found in Landau-Kleffner Syndrome. This test measures Christina's brain waves over a 24-hour period. Basically, we go into the hospital and about 20 probes are glued to her head, which have a long dangling cord attached to a device that reads the brain waves in a back-pack type pouch. We are then sent home and she is to go about her business for 24-hours. To date she has had 2 of these tests at home and one in the hospital. After the results of her very first EEG came back, to my surprise, Christina has VERY ABNORMAL brain waves which occur mostly during sleep. When her head hits the pillow at night, her brain goes crazy, which breaks my heart each and every night when I put her to bed. To date, she is still having these seizures. They occur on the front-right part of her brain, which is a direct result of her inability to communicate effectively. We are currently waiting insurance approval for another EEG.

 Christina during a 24-hour video EEG at Rady Children's Hospital

 "Someone let me out of here!"

A therapy dog came to see her and she was saying goodbye :)

After we were told that Christina was having seizures, we tried a couple of medications. One of the medications we tried was steroids. She was on them for 5 months and it was a complete nightmare - not just for her, but for our family. The only change I saw in what was once a sweet little girl was RAGE. Yep, Christina had "roid rage". She developed the typical "moon face" of someone on long-term steroids and had a bulging belly. She gained 17 pounds in just a matter of 3 months, which is a lot on a two year old's body. It was very difficult to find clothes to fit her. I want to say that putting her on that medication was a mistake, but I do feel that after all of that torture, she gained some receptive language. Receptive language is the ability to understand what is being said. She was taken off of the steroids due to high blood pressure, but when she was taken off I noticed the improvement that the steroids had on her. She is now on a medication called Trileptal, which has prevented worse things from happening I suppose. 

The following photos are what a two-year old looks like on steroids. I am sobbing as I post them - the guilt I feel for giving her this medication is indescribable...It causes me great pain to look back on these pictures of her.

Christina trasformed so much physically that she did not look like the same kid. To me, she was still beautiful. She is an amazing kid for still showing me that she truly loves me after I have given her this medication and put her through so much.  She has been off of the steroid for a little over a year and is back to her slender self. She is as smart as she is beautiful...

Christina, Spring 2012

So after numerous labs, medications, therapies, you name it...here we are. My baby girl is requesting things on her own by saying "I want..." and attempting to tell me what she wants. She knows her ABC's, counts to 23, knows all of her shapes and colors, and spontaneously names what she sees. She also loves animals and can name harder animals like rhino, hippo, and knows the difference between whales, dolphins, and sharks. Christina willingly goes through 40 hours a week of therapy (including special ED preschool) and shows me that miracles CAN happen. Her good days, and even her bad days (hey, everyone has them!) give me the drive to continue to fight for what she needs. She has taught me patience and understanding and I thank her for that. She has also made me want to make other people aware of what Autism is and what it is like to live with...I want to tell the world because there are so many people that look at her and assume that she is a misbehaved child or a brat. She is neither of those. She is a sweet, loving little girl who is struggling with communication and sensory issues.

 And with all of this, her twin brother has been nothing short of amazing. He is the most patient and understanding brother to her...I couldn't ask for more out of him. He sits through all of her weekly appointments and has even been trying to help her lately. 

Aside from preschool, Christina has an in-home therapist 4 times a week and goes to speech, occupational therapy, and physical therapy 2 times a week. She and I have also been attending a 12 week parent/child training at the Rady Children's Autism Institute once a week in San Diego. I am learning a lot!

The most recent treatment for her besides therapy, is biomedical treatment (Diet change and supplements). I sure hope we see more progress. And if we don't, well then I wont have to wonder if this approach would have worked if we didn't try it... Any avenue I see for her, I will try. Her former pediatrician once told me that "Behind every successful child is a Mother who never gave up" - and I am that Mother. I will never give up on her, not even on her worst days. 

Dr. Sears visit, a biomedical approach for Autism

Christina had her appointment with Dr. Sears on Monday, and oh am I in for it! That doesn't matter though because I would do anything for that little girl. Easy or hard- I will do anything.


Why did I decide to try the biomedical route? Well, simply because other than intense therapy, her symptoms/behaviors have not changed much. I certainly don't expect for her to wake up one day after a couple weeks of this approach and seem completely "healed". I am hopeful for some positive changes though, because stuffing her with risperidal is just not the answer. I hate that medication...I cringe when I have to give it to her actually.


Dr. Sears recommended that we start her on a few supplements (fish oil, taurine, and B12 injections). So far, I have given 3 doses of the fish oil and the very first B12 injection was given about 30 minutes ago! I was to give this to her while she is asleep. She flinched and let out the cutest little sigh. It was so easy! Not sure what I was worked up about. I thought maybe I'd spend the next 2 hours in her room comforting and soothing her back to sleep...nope! Still sleeping away!


We are waiting on some lab kits to come in the mail now. After the labs are completed, then we will start the casein free diet. This may not go too pretty because dairy is Christina's all time fav! Two weeks after going Casein free, we are to go gluten free. 


While all of this seems time consuming and strict, as a Mother to Christina- I have to try this approach. No regrets! She shows me in ways of her own that let me know there is a bright kid in there. She just has trouble getting most of it out.


So that was the visit with Dr. Sears - very kind and compassionate Doctor. Christina even tried signing to him (itsy bitsy spider) and told him "Hi dare". We will see him in about a month when all of her labs are back.  Until then...supplements and diet changes here we come! 

Sidewalk surfin? LOVE HER!!!

Little Miracles

The smallest little miracles, the meaning of Christina's words - I notice them now like I never did before. To know in my heart that she is in tune with the world around her is a miracle within itself. Some days I am not quite sure that she is understanding much of what is being said to her. Listening to her babble like an infant most of the time makes me wonder... She does however, say a lot of things that have TRUE meaning. Of course everything she says has meaning to her, but I am talking about the things that myself and others can understand. She is such a miracle. Every single word is like a melody...that little girl gives it her all and tries SO hard.


Tonight after her bath, Chris was trying to get her dressed while all she could do was kick her legs and scream. It ended up being a huge tantrum. She kept saying "Aye-yull! Aye-yull!".As I am trying to help Chris figure out what she wants (took me 10 minutes), it clicked- She just wanted her Ariel pajamas! I pulled them out of her dresser and after I put them on, she was a happy little mermaid girl :) 


She had difficulty calming down and falling asleep. So, as I laid with her in bed, I sang this song... I can't help but wonder if she knows how proud I am of her. I'm pretty sure she makes herself proud! She gives me so much hope, so much joy, so much love. My miracle girl... <3

An unexpected deployment

Well, a couple of days ago, Chris was told that he will be going on a deployment with the USS Mercy (a hospital ship). All I am told is that this is a humanitarian mission. Not sure if that's true or not... It came as a shock because he leaves in a week and is on shore-duty, not stationed on a ship. I appreciate all of the support from my friends and family. But, for those who say "well he's in the Navy", I really don't need to hear that. I know what branch he is in and I have known that ever since I have known him. I realize that he is needed, it was just so unexpected and hit me like a ton of bricks. I think I would have been able to swallow it better if he were stationed on a ship. We have been scrambling to take care of things around here and spend as much family time together as we can. 

The ship actually leaves today, but he will be leaving next Tuesday to fly out and meet the ship. I thought it was hard when he deployed while the twins were babies, but I know this is going to be one of the hardest ones. I have a lot on my plate right now, so I do ask that friends and family support me emotionally. I didn't expect to go through this for another two years. 


We went to the aquarium over the weekend...here are some pics :)