Meet

Emma Faith

Birth date: August 15, 1999

On August 15, 1999 Emma Faith was born. She was born looking healthy with perfect apgar scores. The next day we noticed she was having “jerking” movements. There were 9 years between Emma and my son Josh, and I forgot what newborns did. I just assumed it was normal baby movements. They were grand mal seizures. She was rushed 3 hours away to a larger hospital and stayed there for 11 days while tests were done on her. During this time, they had put Emma on Phenobarbital which controlled the seizures. After the 11 day-stay, the Neurologist sat us down and told us this: (Your daughter is missing a Corpus Callosum and will be mentally retarded. We don’t know the extent of it. She could be dyslexic or severely retarded). We were devastated by this and were wondering just exactly what Emma had. I guess we wanted a name to put on what she had so we could at least research it. The day we went home, I noticed Emma having a weird type of jerky seizure. These jerky movements got much worse, and our doctor finally figured out she was having infantile spasms. Emma developed an allergic reaction to the Phenobarbital and was switched to Depakene. Emma’s seizures grew so bad that we went to Burlington, Vermont to see a Neurologist. He ordered ACTH shots for her. My husband gave these shots to Emma at home for 6 weeks morning and night. I kept a journal of all of her medicines and reactions and was amazed to find out her going from 1,200 “jerks” a-day to about 600. The shots worked well for controlling her seizures, but she had other side effects that were terrible. She swelled up so much that some people at church asked me who’s baby I had! She was inconsolable and cried almost 24 hours a day. Her immune system got so low that she had constant double ear infections and colds. The worst part was the rash she developed in her private area. The rash was bleeding and growing everyday. It looked like her skin was being eaten away by some kind of acid. The dermatologist had never seen anything like it and ordered Domeboro for her. She was not able to wear a diaper or any other clothes in that area for over 2 months, but she eventually healed.
Our next step was to hunt for combination of drugs to control the remaining seizures. Some of the meds we tried were Clonazepam, Lamictal, and Topamax.

When Emma was 2 1/2, we tried her on the Ketogenic diet. This was a miracle! Her seizures were completely stopped except for on small one before bedtime. Emma had stopped nursing and was eating from a bottle at this time, so we had the formula version of the diet. It was awful! It smelled and tasted like spoiled milk, and she noticed it too. She would refuse to eat all of the formula during the day, so she was lacking much of the water she needed which lead to her chronic constipation. We were giving her enema’s every day to make her go, and she screamed constantly. She was on this diet for 2 months before we had all had enough. The minute I switched her bottle from Ketogenic formula back to her strawberry-Pediasure, she sucked her bottle down in 3 minutes flat! Of course, the seizures came back, but she was able to have bowel movements again.

Emma’s next battle was after she turned 3. She suddenly developed an “arch” to her that was uncontrollable. She stopped eating from the bottle and from a spoon and seemed like she was in pain. Her arch continued to worsen, so we took her back to Vermont and had a G-tube placed so she could eat. They could find no reason for the arch, so we were sent to Children’s Hospital in Boston. They not only found out that she had severe reflux, but Aicardi Syndrome as well. Emma’s reflux was so bad that she had aspirated and developed pneumonia. We had to take her home to NY and wait for her lungs to clear up before her fundoplication surgery.
She finally cleared up and had the surgery. What a difference. She was almost back to the girl we knew with about 2 months of physical therapy to correct her form from arching. Throughout those years, Emma was hospitalized more times than I can remember for pneumonia and failure to thrive.

We started to notice that she was the most sick from Fall to Spring. This concerned us and started us thinking we may have to move from the cold weather if it got worse. It got worse. When Emma was 4 years old she was rushed by ambulance to the Children’s Hospital in Boston again…for pneumonia. While she was there they discovered there were other problems too: The Depekene she was on started to effect her liver. She was taken off that and put on Topamax and had 2 blood plasma transfusions. She also had 2 broken femurs and several crushed vertebrae. We were more than surprised about the broken bones. Emma was never put on any calcium supplements, and because of that, her bones grew weak and broke. She was immediately put on several different meds to deal with all the issues she was having. At the time, Emma was on these meds: Synthroid, Diazepam, Keppra, Prilosec, Reglan, K-Phos, Topamax, Multivitamins, Calcium and Vitamin D. Also, Emma was to go to Boston every 3 months to get Pamidronate infusions to get her bones back to normal. Emma went home in a spica body cast for the rest of the Summer. The cast went from under her arm pits to her ankles. Most of our time was spent cleaning her and the cast, so we ended up getting a nurse for a few days a week.

We decided it was time to move to a warmer climate. The doctors in Boston didn’t know how long she would last in the cold with all the pneumonia’s she was getting. We moved to Houston, Texas in November of 2003 and was set up with many doctors there. The entire Winter went by, and Emma had not gotten sick one time. We went from having her hospitalized most of the year to only one time…and that was in July. She picked a virus up from somewhere, but it definitely was not because of the cold weather. Texas worked out well for Emma

While in Texas, we tried Emma on the Ketogenic diet again, but this time it did not work. There was no change in seizures, so we switched some of her meds again. She was now on Zonegran, and Sabril (a Canadian drug that works very well), but we took her off the Topamax.
Texas was great, but my husband and son grew tired of all the heat and no snow for thousands of miles! We started to look into other possible places to live to accommodate all of us.

Fresno, California it was! The mountains were less than 1 hour away, and the beach less than 2. We have been here for 7 months now, and Emma’s health has continued to be steady. She has had only one pneumonia since we have been here and seems happy. She turned 6 while in California, and on her birthday, she got 16 inches cut from her hair. It was a knotted mess, and every time we would try to brush her hair, she was having seizures, so we cut it and sent it to Locks of Love.

It’s now 2008, and we are still in Fresno. Emma has done very well, and it’s mostly due to getting out of the cold weather. She still has some battles with congestion etc, but that seems to be the norm with these girls. Emma has met a friend with Aicardi Syndrome right here in Fresno. They are close in age and have play dates. She finally has a BFF:)

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