Mia Rose Piscitelli
I never thought I would be able to tell Mia's story and I think I am still in shock. I hope by sharing her story with people I can learn from other people's stories and they can learn from mine. Mia was 7 months old in December 2006 when she contracted HSV1 MENINGITIS-ENCEPHALITIS.
In August 2006, we moved from NY to Florida. In October 2006 my oldest daughter, Megan found a lump under her jaw. She said her tooth hurt so I figured she may have an abscess. I looked in the Yellow Pages and found a local dentist. When they x-rayed her tooth they said it was a small cavity and it was not an abscess. The tooth would have to be removed for braces anyhow, so the dentist removed it. About a week or so later Megan was still not feeling well and the lump was getting bigger. She also started to develop sores in and on her mouth, in her eyes and on her hands. One doctor thought she had Steven Johnson syndrome since she tested negative for mono and strep. Finally, three doctors later, she was diagnosed as having mono and fever sores. This doctor also told me that another child had dental work at the same dentist and also came to his office with the same symptoms. The doctors assured me that Mia and her 2 year old brother couldn't get it from her. Mono before the age of five is rare.
On December 4th Megan went back to the doctor to get medical clearance to return to school. Mia had a fever and a sore on her tongue so I asked the doctor to examine her. He felt that whatever she had was viral and should resolve itself in a few days. I asked if he thought he should do blood work on Mia since Megan was so ill and he disagreed with me. The next day I was going to take Megan to school and when I went to get Mia out of her crib she was burning up with a 105.5 fever. She was making this awful moaning sound and had vomited. She was also very stiff. I took her to the local emergency room and they also felt she had a virus and they were ready to send her home again until another doctor suggested that they draw some blood. Her white blood cells were 33,000 so they decided to do a spinal tap. There were white blood cells in her spinal fluid but not many so they thought it was probably the viral meningitis. they said she would be having an ambulance come to take her to a pediatric hospital 50 miles away since they weren't a pediatric hospital.
The doctor said the viral type wasn't so bad and they would just be giving her fluids etc. and monitor Mia for a few days.
In the ambulance on the way to the other hospital, I was looking at Mia and noticed her eyes were twitching. I asked the medic who was in the back with me if Mia was having a seizure. She started yelling for the driver to pull over on the highway and call 911. They started arguing with each other and I took Mia out of the seat and laid her flat on the stretcher. I started screaming that I thought they were 911, why are they calling 911!!!!! Finally the rescue truck arrived and they gave Mia valium to stop her seizure. They tried to give her an intra-osseous iv but it slipped and her leg blew up.
When we arrived at the hospital Mia stopped breathing which luckily was for only about 30 seconds or so. The doctor at the hospital asked the medics if they gave Mia oxygen and they told the doctor they didn't have oxygen in there truck!!!(NO JOKE) Mia had one seizure but it lasted for over 20 minutes. After a few days at St. Mary's we figured out that she had HSV1 meningitis-encephalitis. We figured she probably contracted the hsv1 from Megan and it spread to Mia's brain thru an ear infection or something. It was explained to me that although this was a viral type it was also very rare. I looked it up and this type strikes about 4 in a million. They had only seen one other case in 20 years. There is a very high mortality rate and approximately 70% of survivors have neurological impairment. The treatment is a 21 day course of Acyclovor. An MRI determined that Mia had suffered temporal and occipital lobe damage.
Mia was discharged on December 27, 2006. She is now 18 months old. She is severely delayed. She cannot yet walk or talk. She is functioning in most areas at about a 6 month level. With the help of her wonderful speech, physical and occupational therapists she has come along way. She can hear but since she is not vocal she is starting to learn sign-language. I know Mia has many obstacles ahead of her but when I look at her beautiful smile I see how happy she is. She tries so hard every day of her life. When she goes to see her Neurologist he says "I can't explain how Mia is sitting in my office and doing so well" he said he never thought she would survive and be thriving so he won't dare try to predict an outcome..
Well that is our story, I am glad to have the opportunity to share it with others.
(Lisa Mia's Mom)