Kayla’s story 5/12/15

As parents, we all have one thing in common: we want what is best for our kids, and most importantly,  we want to protect them in every way possible. I have always followed Doctors medical advice, and for the past 15 years I have done what I need to keep them healthy. As of right now,  all 3 of my kids are up to date on their immunizations.

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   My daughter was born, on time, completely healthy and healthy with mild asthma. She is very smart, funny, outgoing and extremely talented playing multiple instruments and draws like a professional at the young age of 14.

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 This continued. I made several trips the ER because it got to the point she has nausea and vomiting. I went to a neurologist who ran bloodwork and it showed a positive ANA. After 3 months on a wait list for rheumatologist for possible autoimmunity and lupus, I was told she would not diagnose lupus at such a young age but there’s a strong possibility she could develop it later. She said she was concerned about her heart and tonsils which were so large could be depriving her brain of oxygen. on 11/6/12 I had them removed. EKG was normal. Without more answers I went back to the neurologist,  he diagnosed ADHD, complex migraines with and without auras which made her see zig zags and dots, lightheadedness, vomiting and nausea. Several medications were tried and failed. My once healthy daughter continued to decline. One afternoon a concerned teacher sent her to the office,  the school nurse  called her a liar, she was told to “suck it up and everyone gets headaches.” sent her back to class and did NOT contact me. My daughter walked home tired, disoriented,  nauseated, and one side of her face swollen, it looked like she had a stroke, her speech slurred and she had a seizure at home lasting 3 minutes! which sent us back to the ER.  Her neurologist ordered an EEG which was normal. In march 2013 she was admitted for migraines to have DHE which was supposed to “reset her” so prevention medications could be used, but it was unsuccessful. Home study was recommended but the school refused to comply. I was threatened with truancy charges despite medical documentation showing she was too ill to attend school regularly. After a long battle with the school, who told me they had more authority over my daughter’s health than her NEUROLOGIST. My daughter was accused of faking her symptoms despite doctors notes and ICD9 codes showing diagnosis which I was not required to provide. I had to homeschool her for her 8th grade year. No service were provided for ADHD.

   in October 2014, a 2nd dose of gardisil was given to my daughter. I did not know at the time her symptoms were a result of her vaccines. Immediately she had lightheadedness,  dizziness,  migraines retriggered, but we were still sent home.  Again, within 24 hours she had a seizure at school, collapsed at school and taken to the office in a wheelchair. The ER doc looked at her history of migraines and was told it was a migraine with possible syncope due to heat. no fluids were given for dehydration.  The follow up with her neurologist,  he determined it was Gardasil. He said he had seen other patients with similar issues and did not want her to have the 3rd dose. As a precaution he’d order another EEG which was normal.  In December 2014, just a month and a half after Gardasil second dose,  she stopped menstruating and hasn’t since. Pelvic pain, nausea,  vomiting,  fatigue continued for months,  finally appendix issues were ruled out when ultrasound showed cervical cysts and ovarian cysts.I spent several weeks trying to find a gynecologist willing to treat a 14 year old with these issues. Most refused.  On 4/7/15 she had laproscopic surgery which drained her ovarian cyst to preserve fertility, removed a fibroma and left the cervical cysts alone although nobathian cervical cysts are only seen in menopausal women.  Its now may and she still has menstruation issues,  continued pelvic pain, GI issues, difficulty eating, and her cardiologist had her on a 24 hour heart monitor last week due to erradic heart rate.

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She can’t go to school and sleeps 12/14 hours a day.  Her doctors are still working on answers and again I will have to fight for home study. Every day I have to watch her decline and her doctors don’t have many answers, only more tests.

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My daughter now spends most of her days sick to her stomach when she eats, if she eats at all, and curled up on the couch in a ball from the physical pain she feels every single day.

   My daughter was happy,  healthy and active prior to her vaccines,  and without diagnosis I can’t get exemptions and my other children don’t qualify either. 
   SB 277 will cause even more trauma to my daughter than she’s already endured. This has effected her physically, emotionally, socially,  and academically.

By the end of May 2015, We were in the ER 4 times in 3 weeks with seizures, in the month of May alone. She could not walk and I had to carry her down the stairs. To put that in perspective, she’s 5’4″ and I’m only 5’0″. One doctor said it was complex migraines, another said complex partial seizures. EEG was normal. since this happened more than once, I still don’t know the truth.

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In June, She was diagnosed with PCOD (poly cystic ovarian disease). Her testorone level is double what it should be, we are still waiting for endocrinology. We were told by the gynecologist that she has an increased risk of cancer and when she does plan to have children in the future, they can discuss IVF. She had an endoscopy. They told me they found eosinophils on the biopsy over the phone, then when I saw the GI specialist this past week we were told no, it’s just acid reflux, then they did not want to give me a print out of her records. I am now going through the hospital to obtain more proof.
It’s now July, Her symptoms have improved now that I have started to detox her. I took her off all medications, increased her antioxidants, started vitamin D supplements. She’s increased drinking water as well as removing gluten and milk.
Update: My daughter was diagnosed with dysautonomia after a tilt table test. The same day she was admitted to children’s hospital overnight after she started having seizures which I believe we’re triggered by the tilt table test. The doctor wrote the diagnosis on prescription pad, without that they would not have believed us. The doctors in the ER treated us poorly when they looked at her history and saw that we blamed her symptoms on her vaccines, which she now has a medical exemption for. They asked to speak to her alone because they suspected child abuse and were mad to find out we have a good, loving, and close relationship. The morning neurologist accused her of faking her symptoms. She asked what she wanted to be when she grew up and asked if she considered medicine because she is “extremely intelligent” and knowledgeable about her own symptoms. After discharge we were referred back to her pediatric neurologist who was shocked they made allegations of faking her symptoms because he knew she was very ill and could tell just by looking at her that she had dark circles around her eyes, and her heart rate was erradic. I was advised to find the best Dysautonomia specialist I could find. I was not given a referral, but a suggestion to try Rady’s. I tried Rady’s, but was unsuccessful. So I tried CHLA, UCLA, UCI and USC…all of which did not know what dysautonomia was. I did find a specialist at Scripps but the wait list is 6 months to a year. We were told to increase salt and water intake for dysautonomia. Meanwhile she still has stomach issues. The endoscopy showed 13 eosinophils. It takes 15 to get a clinical diagnosis of Esoniphilic Esophagitis. I was told to remove gluten, which I already did. Her cervical cysts are back one is 1.4 cm connecting to her bladder, and unknown issues with her kidneys which they dismissed and did not discuss with me. The bottom line is my daughter is not getting adequate care. Not one doctor wants to take responsibility for her and it’s difficult to get her treatment.
Not only that, but she is homeschooled so due to her medical issues she does not get to participate in orchestra, she does not get to attend prom with her boyfriend and she does not get to graduate with all her friends. I was told going to college will be a challenge unless we can find the right doctor to treat her. It is extremely frightening to me that she is so ill. She doesn’t regulate her blood pressure or heart rate, so I don’t know how they think she could possibly fake something like this. Changing position or standing up quickly can cause her to faint. Walking for longer than 5 minutes makes her tired. She’s 15 years old!

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