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 :)

Suspecting something wasn't quite right

Sometimes people ask me which of my twins was the first to say a word and are shocked when I tell them that Christina was. Between 8 and 9 months of age, Christina spoke her first word - she said "Dada". Not long after that, she was saying "Mama", "Kiki" (Cat), "Hi", "Bye", etc. She was a happy baby. She loved to be held, tickled, and talked to. She would look me in the eyes and smile at me. I have videos of her babbling to the camera and just giggling away. I often sit and wonder what the heck happened. It seems like a blur to me. I have to look back at pictures and see old videos of Christina to remember what she used to be like.


Christina crawled much later than Andrew and walked a couple of months later than him too. Andrew was an active little guy when I was pregnant, as a newborn and still hasn't stopped - so this meant nothing to me. Between 18-22 months, something changed for Christina. She stopped saying the words that she had learned, she was very irritable, and actually appeared to be regressing. I did "wait it out" for a couple of months and I will never ever forgive myself for that. I figured that since she crawled and walked later, that she would take off talking more in no time. It became very apparent to me that I had to do something. When Andrew started to put 2-3 words together and could express his needs to me and all Christina could do was cry until I figured out what she wanted, I knew I had to do something. What makes me frustrated is that I had expressed concerns to her pediatrician at the time and I was told "she will catch up". I am becoming one who believes that vaccinations play a part in the onset of Autism. I recently looked at the dates on her shot record, and sure enough she had a whole set of vaccinations at her 18-month check up. This is around the time I noticed something wasn't right. 


At around 22 months, I finally convinced her pediatrician to make a speech-language referral. I also switched pediatricians immediately. I knew I couldn't keep a Doctor who didn't have my child's best interest at heart. I shouldn't have been forced to fight for a speech assessment. So, Christina became a patient of Developmental Pediatrician, Dr. Hurwtiz. She was assessed and was only speaking and understanding the language of a 6-month old baby. I was devastated, in shock, hurt... The speech pathologist recommended that she see a pediatric neurologist and that I contact the Regional Center. I remember thinking what the heck is a Regional Center? Well, the Regional Center is what has opened so many doors for my baby girl. At 23 months old, Christina was receiving speech therapy and a teacher contracted through Regional Center was working with her in the home. 


When we finally were able to see the neurologist, she was 25 months old. An EEG was ordered to monitor Christina's brain waves over a 24-hour period. The neurologist was looking for signs of Landau-Kleffner Syndrome (I'll explain in a future blog). I was also told that she most definitely falls on the Autism Spectrum. In fact, her check out sheet that day said "Autism, current or present". I was sent with lab slips for her to get tested for certain genetic disorders as well. I left Rady Children's Hospital that day feeling like I had just been punched in the stomach. I had to pull the car over a couple of times because I could not see the road with all of the tears rolling down my face. I kept looking in the rear view mirror at my precious baby girl thinking in my mind that I somehow did this to her. The guilt I felt is indescribable.


I was definitely not prepared to be told that my child displayed characteristics of Autism. Denial set in, full force. I was not ready for what was ahead of us. I don't think anyone can be prepared to be told that their child has Autism.

Re-cap of the baby days

Taking care of newborn twins was hard at first, but thankfully Andrew and Christina were pretty good babies. They really only cried if they were hungry, needed to be changed, or if they were just taken out of the bath. Christina was definitely the fussier one and wanted to be held a lot. I will admit that I went into panic mode when Chris was at work and they both started crying at once! I did get them into a routine, where they were eating and sleeping at the same times for the most part. Here are a few baby pictures of them...I love looking back. 

2 weeks old

Daddy and Tina

Mama and Andrew

First night spent in their cribs

Go Chargers!!!

Why Mom? We are tired...

He found his favorite pumpkin!

My little elves

Tina is ready to pinch!

The most beautiful eyes

We made a HUGE mess Mama!

So happy...

Uncle Chris and Tina

Birth of my twins 8/13/08

In order to help me move on from the grieving period of having a daughter with Autism and my own depression, I feel like I need to type out and share what happened to me when my twins were born. I have always had it in the back of my mind, and I can't help thinking that Christina has Autism, Landau-Kleffner Syndrome, or whatever you call it -because of how my pregnancy, labor, and delivery went. I do hold Balboa Naval Hospital at least partially accountable for what's happened to her. I feel that I  am lucky to be alive, myself. I am typing this exactly how I remember it...

At about 33 weeks into my pregnancy, my husband left for a deployment to Africa and I developed Pre-Eclampsia. The only way to cure this condition is to deliver. I remember being so swollen and having high blood pressure, yet every time I went to a check-up appointment, nothing was done. I went into labor and delivery at 35 weeks when my right leg was so swollen that it was twice the size of the other. I was sent home and told that I cannot pick my due date. WHAT? The toxins that were running through my body were not only dangerous to me, but to my unborn children. I was never monitored and never put on bed rest. NOTHING was done. If Pre-E gets severe enough, it can cause the Mother to have seizures and can be fatal. I feel like my life meant nothing to the doctors. The only thing they were concerned with was the weight of my babies. I was told that they needed to reach at least 5 lbs each and each day inside of me was 2 and 1/2 days out of the NICU. Okay, I understand, but what about my well-being? How can I produce healthy babies if I am unhealthy? I gained 95 lbs during my pregnancy because of Pre-E.

35 weeks

On August 12, 2008, I went in for a check-up. I was 37 weeks and 1 day pregnant at this point. An ultrasound  determined that both babies were at least 5 lbs. The toxins in my body were also much higher. Since they were both head down, I was told that I could labor and try and deliver them vaginally. I was pumped full of magnesium, which was to prevent me from going into seizures during labor. I was given pitocin to begin the induction and Andrew's water was broken. A monitor was stuck on Andrew's head and another one on my big belly to monitor Christina. All throughout labor, I was throwing up and passing out. My blood pressure would go sky high and something would be given through my IV to lower it, which would cause it to go too low. My epidural was placed wrong so I was in extreme pain for 14 hours. About 11 hours into it, Christina fell off of the monitor. The nurses tried and tried to find her heart beat but couldn't. A doctor rushed in with an ultrasound machine and tried to find her heart beat. I kept asking what was going on and I was in tears...I was told nothing. Great bedside manner, right? I was finally told that she had moved sideways as Andrew had made his way further down with contractions. Silly little girl was stretching out. Her heart rate, however, was high and she was stressed. It was explained to me that Andrew would likely be born vaginally and Christina by C-section if they could not turn her around. I chose to go ahead with a C-section because I did not want to stress Christina out any more than she was, nor did I want to deliver twins two different ways. 

It took about two hours from this point for doctors to get me into the operating room. I was strapped down and a drape was placed in front of my face so I couldn't see what was going on. All of a sudden, I felt the worst pain I had ever felt in my life and I began to scream uncontrollably. The doctors kept trying to tell me I was only feeling pressure, but I felt like I was being butchered alive. Next thing I know, a mask goes over my face and I am knocked out. At this point, I truly believed that I was dead. I went from screaming helplessly at the top of my lungs to silence. I could hear background noise for a while, and then I heard a baby cry..but it sounded like it was coming from down a long hallway. I thought that I had entered another world- death. Not long after the first baby cry, I heard another baby crying - again, sounded to me like it was coming from far away.   From this point on, I don't remember hearing anything at all. The next thing I remember is being moved from the OR table onto a gurney. I remember looking over at the OR table and seeing it covered in blood and tools all over the place. I still thought I was dead...I must have thought that they were moving my body to wherever they keep the deceased. I did not feel anything emotionally - I felt completely numb. I really thought that I was gone.

Andrew and Christina came into the world on 8/13/08 at 5:49 a.m. and 5:51 a.m. via C-section after 14 stressful and hard hours of pointless labor. My mom tells me that Christina was pale and not crying like Andrew was at birth. It makes sense since I had severe Pre-E and that Christina was stressed for 3 hours before she was born.

Andrew

Christina

I woke up in a recovery room alone. I remember looking down at my stomach and wondering where my babies were and hoped that they were okay. I was cut from hip to hip and had about 30 staples. Andrew and Christina were a few hours old before I finally met them. A nurse handed them both to me, and they were the most beautiful little babies I had ever seen. I wished that Chris could have been there to see them and to hold them. They were so tiny. I felt weak, so I handed them back to the nurse. I was in so much pain and all I wanted to do was sleep. That night, a nurse forced me out of the bed to stand up. When I stood up, I felt as if my insides were going to drop to the floor. My stomach felt heavy and I felt so frail.  The pressure put on my C-section incision was unbearable when standing up.

The next day, my stomach was swelling up and looked like I was pregnant again. A doctor brought in an ultrasound machine to see what was going on and I remember thinking to myself there cannot be a third baby in there that they missed! (With Balboa Naval Hospital's level of competence, this would not have surprised me.) What the doctor saw were hundreds of blood clots inside my uterus. Since the C-section, I was basically hemorrhaging thanks to the incompetent doctors in the OR. Instead of taking me back to the OR to get these clots out in a humane way, I was forced to lay in my hospital bed while doctors reached their hands up inside me and pulled them out...one by one. From what I remember, this went on for over an hour and people were coming out of their hospital rooms because of what they were hearing. Needless to say, I found myself screaming at the top of my lungs in excruciating pain again. They filled a tub about 2/3 of the way full with golf ball sized blood clots. After it was all over, I just wanted to sleep. I should have been bonding with my beautiful newborn babies, but instead I was too weak to even hold them. I finally asked my mom if I was looking at her cross-eyed because I could barely see.

Yet another day later, an intern came into my room almost in a panic because he discovered that I needed a blood transfusion. How did doctors not notice this before an intern? I mean, I was getting my blood drawn every few hours. How come no one was looking at my blood count until two days after the twins were born? Especially with all of the blood clots they had removed...no one cared. He said that each blood draw showed a significant decline in my blood count. I had lost over 2 liters of blood. I signed a bunch of paperwork and the blood transfusion started. I received two transfusions. I am so thankful for the intern because without him, my husband would have come home from Africa to my body in a coffin. The critical need for a blood transfusion explained my extreme weakness and blurred vision. Any longer and my organs would have started to shut down. I HATE YOU, BALBOA NAVAL HOSPITAL.

I stayed another three days and eventually started to feel better and was able to hold my babies. My husband, Chris, had received a red cross message in Africa that I was in bad shape and met the twins when they were exactly one week old. And then, the start of my Post Traumatic Stress Disorder and Postpartum Depression began. This is still something that I struggle with today.

If you made it all the way through the horrific birth story of my twins, thank you. This was not easy to write about. I know it isn't the least bit enjoyable to read, but I needed to get it out so that I can begin to heal. Andrew and Christina are the best thing that has ever happened to me in my life and they always will be.