A.S. Face 0950: Louisa

Face 950950aLouisa

Little Louisa, five years old was diagnosed with AS last month at UCLA.

Louisa has had numerous medical challenges her entire life.  Our little Lou just turned five years old in July 2013. She has always dealt with weakness, gastrointestinal issues, and immune issues. Louisa was deemed failure to thrive at six months of age.  She was seen at UCLA at 8 months due to all of her infections.  If there was an illness out there, little Lou would get it.  Her older sister was diagnosed with Common Variable Immune Deficiency( CVID) and put on Immune Globulin Intravenous(IVIG) at four years old. When Louisa was ten months old, she was in the hospital with numerous infections. She had bronchitis, double ear, yeast, sinus, rota virus and c-diff.  She weighed 14 lbs.  Louisa started IVIG at that time and has been doing it every four weeks. She gets hooked up and spends the entire day getting her treatment.

Louisa was diagnosed with Influenza A in January 2013.  It was a surprise since she had just had her IVIG treatment the week before. In twelve hours, she went from walking and talking to being extremely limp and lethargic. I had to carry her into the children’s clinic. They put us in isolation and started an IV.  She had blood in her urine and was dehydrated. She had no strength.  That was the beginning of her downward spiral.

The next few months brought a decrease in her cognition, movements, personality, strength, and overall health.  She started dragging her left foot. Lou was making butterfly wing movements.  She was falling down.  Her struggle to keep up in her dance class and pre-school were beginning to show. The bus drivers, Sunday School and pre-school teachers, family, friends, and peers were beginning to see a change.  Our sweet girl who was early reading could barely recognize letters and hold her pencil.  Her OT and PT kept asking us to keep pushing her doctors to do something.

Our middle daughter has Chiari II Malformation.  Danica had decompression surgery April 26, 2012 for a 15 mm herniation of her cerebellum into her spine,  her C1 was removed. We needed to rule out if Louisa had Chiari like her sister.  We took her to an orthopedic doctor in April 2013. He said that we needed to give it a couple more weeks. I showed him how she was dragging her leg. He just told me to wait.

My husband and I finally got her into her neurologist in May 2013.  Dr. A ordered an EEG and then eventually MRIs. We finally had an EEG done which showed some sort of seizure activity. I took her to another ortho at that time.  She wrote her a script for a brace. I got her to order an MRI of the pelvic region. Louisa was beginning to ask me to carry her places.  Louisa had her brain MRI on June 6th. Her C,S, and L Spine MRIs were on Friday, June 7th, the same day of her recital. Lou BARELY made it through her Bunker Dance Center recital on June 7th.  She was in so much pain! Aaron Turner, Finalist on So You Think You Can Dance, made a wonderful comment about the wonderful soloist during the group number.  He made sure that Louisa didn’t feel badly about not being able to do what she once could.

June 14th Louisa had her fifth MRI in a week.  She did ALL of them without any sedation.  Louisa laid still because she wanted to know why she couldn’t be my runner anymore.  I ran track in college and she would always tell me that she was a runner too.  Now, she was barely walking.

We took Louisa back to her second ortho doctor on June 17th.  We were told that she had Sacroiliitis.  She said that it was on the left side. She said that explained why she had lost so much muscle mass and the weakness.  There was a little bit present on her right side.  We thought that we had an answer, but we were wrong.

I had friends from the Immune Deficiency Foundation that told me to get Louisa’s labs done to test her HLA-B27.  One friend even suggested that she thought Louisa had Ankylosing Spondylitis. My friend has CVID and AS.  She told me that what Louisa was experiencing, was just like her story.  At Louisa’s next IVIG on June 18th, I had them pull the HLA-B27 lab.

June 20, 2013, we met with a pediatric rheumatologist at the children’s center.  She was very surprised to see Louisa’s Sacroiliitis diagnosis.  She put Lou on an anti-inflammatory. She could see that there was a problem, but was unsure as to what it was.  I picked up a brochure in the office on AS and put it into my pocketbook. I didn’t realize how important that brochure would become.

The end of June, I took my girls to the Immune Deficiency Foundation National Conference in Baltimore.  The girls and I meet with members of Congress.  We talk about the importance of access to medications and the cost of them. Louisa was still in pain. She made friends and memories at the conference. Some of these memories we continued to relive over the summer to help her get through what was about to come.

July 2013, I take Louisa back to Dr. A, her neurologist.  She sees that Louisa is regressing quickly.  We explain that we feel as if we are going around in circles without any answers. I was given a copy of her labs after I asked for them.  I was reviewing them at a stop light when I see the positive for the HLA-B27. I call my IDF friend and let her know that she was on the right path all along.

I was a mom on a mission at this point.  I called both doctors to see if they had spoken to each other and discussed Lou’s case.  Dr. A calls Dr. B, who is the hematologist that oversees Louisa’s CVID.  The two decide that Lou needs to get to UCLA as soon as they can get her in.

Louisa celebrates her 5th birthday on July 15th by being pushed in a baby stroller at the Shark Reef in Las Vegas. Her sisters help her stand up for pictures. The next day she has her IVIG infusion. We pack a small bag on Wednesday, July 17th. My husband and I leave with Louisa for UCLA on Thursday, July 18th. We were staying just one night, so that we could fly home after her appointment with the neuromuscular doctor. We were so wrong!

We took Louisa to Manhattan Beach before we checked into the Tiverton House at UCLA.  We have video of Louisa struggling to try and walk on the beach to the water. We knew then that something was seriously wrong.  She is our water baby. Little Lou just wanted to be carried or picked up.

Our appointment was in the morning to do the nerve conduction study (NCS) and Electromyogram (EMG).  We thought they were going to put her under. She did not go under.  She did not have her Naproxen that day.  She was by far in the most pain we had ever seen her experience. The doctors, nurses, and office staff had tears in their eyes. It was so painful to watch and hear.  The doctor called over to the head of pediatric rheumatologist at UCLA.  We were sent over to the next building ASAP.  It was beginning to move so fast, but something was being done to help our baby.

Louisa was admitted into UCLA Orthopedic Hospital in Santa Monica by late Friday afternoon. We found out that Lou had a UTI on top of all of the other things going on.  She wasn’t really eating or drinking anymore when we were admitted. She wasn’t walking. She couldn’t balance well and was falling down.  Our little sweetheart still had a good personality despite all that she was going through.

Each day, we saw team after team of doctors. We saw them from every area of medicine.  They had it narrowed down to a deep-seated infection, Leukemia, or Ankylosong Spondylitis. I never wanted an infection more in my entire life! We prayed to just find the answer so that we could begin to help our baby heal.

We were there from Friday, July 19th until Thursday afternoon, July 25th. We got home to Las Vegas late night on the 25th. We had left our two older daughters for almost a week. Our oldest daughter is a senior in high school.  She took over everything! She even had to bring our middle daughter into the ER for a sprained ankle. We had already missed the first week of our vacation.

Wednesday, July 24th, Louisa received her first Enbrel injection.  She was diagnosed that day with AS. She did have an inconclusive TB test, but they felt getting her started on Enbrel was more important.  Lou took her shot like a pro. She is unfortunately used to getting an IV line in every month.  She didn’t even cry.

Since our return from UCLA, Louisa didn’t get her second shot right away due to insurance issues. She now is getting her shots twice a week.  Her big sister who has wanted to be a doctor since she was five has been giving her the injections.  Louisa was found to not have Uveitis according to the ophthalmologist. We thank God for that every day.

Louisa had her first day of kindergarten on Monday, August 26th.  She is in an all-day regular program. Her teacher knows all about her obstacles.  Miss C is our oldest daughter godmother.  She also taught our middle daughter. She will text me when she has a concern.  Louisa will be getting OT & PT in and out of school.  Louisa is back to her beginning reading again.  She is writing, singing, and will go back to dance class today.  She is a very bright and beautiful girl with many challenges in her life. We are so blessed!  Our 34 lb. little sweetie helps teach others the importance of living life to the fullest.  Our family has a saying that no matter what, NEVER GIVE UP!

Nevada, United States of America

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18 Responses to “A.S. Face 0950: Louisa”

  1. Dear Louisa,
    Thank you so much for being a part of my vision.
    Sincerely Cookie

  2. I was 4 am now 26 contact me if you ever want to talk.
    -Face Number 269
    Leanne Butler
    butler.leanne@hotmail.com
    http://www.facebook.com/leanne.butler.98

  3. Oh NO…I hate AS…but I ❤ Cookie. Louisa now has 949 new friends.

  4. Wow that young poor girl 😦

  5. Oh dear, so young… Hopefully there’ll be progress before she’s a grown-up… Lots of courage to her and her family!

  6. sending you gently hugs and lots of love

  7. Lots of love and hugs and a few tears too.

  8. Lots of love to her and her family!!!!

  9. Oh Baby Girl I’m just SO sad that you have this yucky disease! There are so many people that know how you feel and will be thinking of you and praying for you. Be as strong as you can, like Princesses are, and teach the other kids what a special girl you are.
    Hugs and prayers from a Meme to 4 girls in Oklahoma, Pam

  10. This may sound mean, but this is why I wish they had walks and 5k runs for AS, not Alzheimer’s. Alzheimer’s is a part of getting old, after a long and full life, but AS at such a young age robs you of the ability to have so many things. If only more people understood that AS can come only so early and be so devastating it would be so much easier to rally them around it. All my love to Louisa, her family and anyone else who has to go through this from a young age or watch their little one suffer so!

  11. I think there should be so much more too Cookie! I think it’s slowly gaining speed though and in a few years it will just balloon into something great.
    I do have to disagree with your comment regarding Alzheimer’s. younger and younger people are being diagnosed with that horrible disease. My Mom was afflicted with it from 62 until she died with it at 77′ much too young for her to die. It’s often called ” the long goodbye” as you lose pieces of them slowly and painfully. I can easily see why family and friends rally to do everything they can to find a cure.

  12. Amen…. Bless you all!! I had posted the last post on my Facebook and can’t wait to share your daughter’s amazing story of Faith and Courage, along with her strong family!! There is a saying that is something like this, ” as we are born unto the world, we are born innocent and pure but when we open our eyes, our eyes are laid upon our first Angel, Our Mothers” 😉

    When I share all the stories of all my brothers and sisters of the “beautiful” faces of Ankylosing Spondylitis, I love it!!!

    You are all in my prayers. And to my newest lil sister my lil beautiful angelic Louisa, you are a tough cookie my dear. You hang in there my love…you truly inspire me. You stay smiling and be the lil courageous lil Angel our father God has made you to be!! Love you lil Louisa….

    To her parents, my name is Rosealie and have been sick with AS for almost 17 years now… Amongst other things. Been in a neck flare up for a lil over 17 weeks now and I pray everyday for myself and everyone. For the most part, I am 98% happy. It would really be nice to talk with you all…my email is rosealie73@yahoo.com and I am located in the Bay Area. I can no longer turn my head and wear a neck brace pretty muchal day….reading lil Louisa’s courageous story helps me!!! So thank you with all my heart!!

    Always in my prayers…

    Precious Rose face #770

  13. What a little warrior, little Lou is! 🙂 What an insirpation for the rest of us living with AS! ❤ ❤ It is terrible she has to live with AS, but she sounds like one tough cookie! BIg hugs to all of you.

    Lindsay
    Face 399

  14. Our littlest warrior! God Bless all of you!

  15. I am in awe of your amazing strength of you and your beautiful daughter. I hope by finding out about the HLA B-27 and AS it will help her to get back on track. My daughter is Face 963 and is 10 years old and was diagnosed 25 weeks ago and just took her 5th Enbrel shot. Prayers and thoughts are with you and your family. Please keep me updated if you can. It is so rare that young girls have AS. Take care of that beautiful Lou!!! I know that my daughter Maia would say these same words!!! Also, go to http://www.fightlikeagirlclub.com it is a great resource too. Cookie is amazing and thank God she put this site together for people to share their AS stories.
    Lauren

  16. How is little Ms.Louisa doing these days ?
    I’d love to hear from you ! xxxxxxx

    ~Candyce
    #0700

  17. Louisa is now an eight year old third grader who is in the GATE program at her school. She is on a dance team and a musical theater team at her dance studio. She plays harp, just like one of her older sisters. She is also still singing with the Clark County Children’s Choir. Lou still gets IVIG infusions every four weeks and takes her Enbrel shot weekly. She can tell us at least two days before it rains and when there will be a drastic temperature change due to how her body is feeling. Louisa appreciates life and follows our family motto of, “Love life and live without regrets!”

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