Emily’s family struggle with autism

My husband and I were blessed with the birth of our darling Emily on a very cold February morning in 2003. She was our second child and joined her older sister, Brittany, as a wonderful addition to our family.

The doctor visits and the immunizations…

Our darling Emily developed normally until the age of 14 months…at which time she received her first round of immunization booster shots. At this first visit, she received 3 separate immunizations.

During the short drive home, it was evident that something was wrong. Instead of her normal happy demeanor, she appeared confused and even had an unusual “worried” look on her face. After arriving home, we put her in her walker so we could prepare her lunch. Again…it was evident that something was wrong as she began to pace nervously through the house and would occasionally stop and cry out for no apparent reason. Looking into her eyes…I could see repeated dilations and contractions of her pupils. In an effort to console her, I tried to pick her up but she would quickly push herself away from me. She still had the confused and worried look on her face. After putting her back in the walker, she immediately began to run up and down the hall and continued to cry. Unsure of what to do, I called the pediatrician’s office told the staff about her symptoms and added that I thought was she was having an allergic reaction to the shots. They advised me to bring Emily back in the next morning and I agreed.

At the visit the next day, she was examined by the pediatrician and the doctor’s diagnosis was that she looked fine and that her eyes didn’t appear dilated at that time. Of course, this was almost 24 hours after the immunizations. The doctor told me not to worry so much that whatever it was, it was probably over now. I left the office with the terrible feeling that something was still wrong and that my Emily was not going to be the same. As time passed, the symptoms…the confused look and the unusual crying out… did not go way. In addition, she seemed to be very depressed most of the time. Eventually, I took her back to the doctor and demanded something be done. I asked the pediatrician to check her condition via neurological testing as she hadn’t been the same since the vaccines. I also requested that they run any other tests or do some research on her as she had continued with the strange symptoms. At this request, the doctor reacted with a concerned look and she asked me to wait in the examining room for a minute so she could retrieve some information. She returned about 20 minutes later and gave me some paperwork for the Early Childhood Intervention (ECI), The Child Study Center, and the Sante’Rehabilitation for Children with Disabilities. She told me to contact ECI first and that they would have someone come out to talk with me. As I left the doctor’s office, I was disgusted, angry and confused. I was devastated with the outcome of the visit and with the fact that doctor seemed unwilling to listen and unable to help my daughter.

Emily’s conditions continue to deteriorate…and the Autism is diagnosed…

Emily slowly began to get worse in her general overall health condition. She continually had either a sinus infection or ear infection every month. At this time, according to our new pediatrician, it seemed that she also came down with another medical problem…gastrointestinal issues. As Emily had been on numerous antibiotics, she began to have bowel problems. As if that wasn’t bad enough, she also developed eye problems with continuing watering of the eyes. On several occasions, her eyes would get so bad she would have trouble just opening them in the morning. The discharge from her eyes would dry up around the edges of her eyes when she was asleep so that when she woke up, her eyelids would stick together. ECI did eventually come to our home to examine Emily and their diagnosis was that she appeared to exhibit symptoms of autism. They said that they would return later to do some more testing on her. My thought was that Emily’s problem was not autism because she was a healthy female girl until the immunizations were administered. The ECI representatives exchanged glances and they gave each other a worried look. I immediately asked why they were reacting like this and they stated that they were not at liberty to discuss their feelings about the issue. They finally relented and said that they had heard the same comments from other parents. Later that evening, I began doing some internet research about autism, I felt disheartened to learn that there were other parents who were also experiencing the same issues that I was having with my Emily.

Trying to help my daughter…

During my autism research, I discovered the possible autism treatments with regard to a gluten-free, casein-free diet. I suspected that Emily could be allergic to either or both of these, so I ordered a special cookbook entitled “Special Diets for Special Kids”. I also bought new cookware and utensils to ensure that they were free of gluten and casein residue. I took Emily off of all dairy (casein based) products the first week and replaced it with soy cheeses, rice milk, soy yogurt and other non-dairy substitutes. Almost immediately, we saw improvement in that Emily’s eye discharge problems disappeared and she also appeared to regain some eye contact capabilities. Then, after a week of improvements, I took her off of gluten/wheat products and switched to rice, chick peas, and quinoa-floured breads, pastas and other products. Again, we experienced some successes as Emily’s stomach pains disappeared and she had a normal bowel movement for the first time in several months. In addition, she began sleeping through the night. (Before we began the new diet, the entire family was somewhat sleep deprived because Emily would keep us awake by laughing hysterically, screaming and crying, and pouncing on all of us throughout the night). We hoped dearly that Emily would continue to improve with her eye contact and stop walking on her toes…tripping easily…and running uncontrollably into walls. It appeared to be working! As time progressed, all seemed to be going along fairly well. Emily’s overall health was still a problem. For example the following year she developed a strange bout of fevers and also experienced an array of problems whenever there was a bad ozone day.

The search for a cure or relief…

My repeated internet and other autism research in an effort to help Emily led me to a clinic in Austin, Texas called “The Care Clinic.” They specialized in individualized testing and biomedical treatments for people with autism and related chronic illnesses. I contacted the clinic and explained Emily’s problems, as well as our limited financial situation. The staff at the clinic advised me not to worry about the payment for now and that they would take our case and try to help us. They sent us laboratory test kits for me to do and some blood test kits to be done at the closest hospital laboratory. We completed the lab work then we visited the Care Clinic in Austin. We were amazed at all the people and children in the clinic. After filling out forms and signing papers, we were escorted into an exam room for more testing. Once done, we were moved to another room to and waited to speak to a physician and also with the founder of the clinic.

To make a very long story shorter, they were very personable and explained Emily’s test results to us. Upon learning of the seriousness of the results, I became very upset. Emily had yeast overgrowth and had lymes disease. She also had a mitochondria dysfunction and could not produce glutathione. She suffered from an immune disorder with heavy metal toxic overload. Her body did not produce the necessary enzymes to detox itself and was thus overloaded with toxins. They tried to reassure us in that the clinic offered therapies to help with these issues. They also supplied us with supplements to help Emily replenish her nutrients. We discussed the risks involved and were given all information and details. We began with an intravenous chelation therapy. We came back the next day and completed the intravenous mineral replacement treatments. Emily did great and we returned to the clinic on a monthly basis. Emily also underwent treatments of HBOT (Hyperbaric Oxygen Therapy, Ozone) during his time frame.

After approximately seven trips, Emily’s health improved dramatically. For the first time ever, she spoke with clear meaningful words in a full sentence. For example, upon our return to our hotel room, Emily looked up at me and said ‘I want to go swimming now’. We continued to see amazing things from Emily. She followed the lines in coloring books, was able to use scissors, understood her colors better, and could use her food utensils with more purpose. She spoke the words ‘I love you mommy’ for the first time and it brought tears to my eyes.

The downturn and the regression…

Unfortunately, all of our successes turned out to be short lived. The clinic was forced to close down temporarily due to the economy and financial reasons. As things worsened, my husband also lost his permanent full-time job and has since only been working on contract jobs…leaving us without private medical insurance for our family. Most of the biomedical treatments and laboratory tests needed for Emily’s health conditions are not covered due to laws that protect insurers for not paying for them, these biomedical treatments and lab tests are considered ‘investigational’. Emily has regressed and she really needs these therapies in order to continue to progress and growth. Until my husband finds a permanent position, we haven’t been able to provide Emily with the treatment she needs. It has been 7 months since Emily’s last biomedical treatment and she has continues to regress. She is now only speaking in 2-3 word sentences and has returned to frequently waking up in the middle of the night. She again screams out or cries in her sleep.

We continue to fight the battle…and continue biomedical treatments and to look for ways to help our Emily become a normal little girl.

Ron, Christina, and Brittany…and of course…Emily….