Be Aware of SSPE

SSPE is something that you need to be aware of. 

International adoption is a wonderful way to grow your family and share your love with a child who desperately needs a forever family. If you have adopted from another country, you already know about a large amount of paperwork involved and the time it takes to complete the adoption process. The whole time, your new family member is still in another country being cared for by caregivers who are probably not doing what we would do in our country for a child. You don’t know what kind of care your child is currently receiving. 

There are pieces of the information puzzle that are not going to be filled in by your adoption agency. You have to prepare yourself to look for specific information in the records you will be given. Familiarize yourself with what is in your child’s records– you will be your child’s best advocate.

On January 2, 2011, my husband and I lost our precious adopted daughter, Emmalee, to a fatal disease called S.S.P.E. Those letters are short for Subacute Sclerosing Pan Encephalitis. SSPE is a fatal complication of not having a measles vaccine and contracting the measles.  It is so rare that there were only 10 cases reported in the U.S. last year. No clinical trials are being held in the U.S. for treatment. SSPE is considered an “orphan’s disease” due to the lack of cases.

We adopted Emmalee in July of 2005 from an orphanage in Pune, India. The trip was exciting, nerve-wracking, and thrilling. We were told when we went to her orphanage, Preet Mandir, that she was “strong-willed.”  When Emmalee, then Snehal, came home with us across the world to be part of our family, she just didn’t feel well. What we found from lab testing was that she had two different intestinal parasites. She was treated for those and we were told they were gone. She had some genetic testing for concern the pediatrician had and baseline blood work. We noticed a slight tremor in her right hand and a problem with fine motor activities. When she was in kindergarten, we began taking her to an occupational therapist.

We continued to see unusual behavior, and she exhibited both behavioral and learning problems in preschool and throughout kindergarten. Her emotional outbursts and lack of attention were called ADHD by her doctors, and we were referred to a child psychologist, a child psychiatrist, and a pediatric neurologist. All of these doctors reviewed anecdotal records from teachers and checklists that we had been asked to complete regarding Emmalee’s behavior and social skills. They did not do any kind of diagnostic testing to look for any other reason for the problems that Emmalee was having.

The problems continued in first and second grade, and she was assigned a personal assistant in a school to help her to focus, complete assignments, and deal with her strong emotions. During the summer between first and second grade, we noticed a loss of scholastic skills. We knew that she had these abilities months earlier, but all of a sudden, she was losing skills. She went to two different summer day camps and had a wonderful summer of activity. She loved swimming and playing with other children, and at her animal husbandry camp in Littlestown, she learned how to milk goats and cleans stalls with a smile. Emmalee would say, “Look, Mommy. My pony left me a gift!”

Then, on August 7, 2010, my beautiful Emmy started to have trouble walking. The next day, she began tripping and falling. Her head drooped during breakfast. She was listing to one side and falling out of her chair.

The next day we went to the pediatrician. He sent us to the pediatric neurologist. He said that Emmalee needed a waking EEG to check her brain waves and an MRI. That sounded easy enough. There are a lot of hospitals in our area. However, what we then found out was that none of those hospitals sedate children for medical testing. That is a sub-specialty. Luckily, a cousin of mine who is a pediatrician at a large children’s hospital responded to my SOS e-mail and told us to come up to her hospital.

After one week, multiple EEGs, an MRI, and a lumbar puncture, Emmalee was diagnosed with SSPE We were told there is no cure. They found a third intestinal parasite that had not been detected when we came home from India. As we began our research, we were told the treatments are usually unsuccessful.

We began a treatment protocol with the help of a world expert on S.S.P.E. whom I located in Ankara, Turkey. The doctors at the hospital where my daughter was treated were not familiar with the disease or its treatment. As it turned out, the medicine that was needed for treatment is not FDA-approved, which meant the doctors couldn’t get it. We called the manufacturer in Ireland who mailed it to the US through Canada.

The treatment was not successful. The lessons learned through this terrible ordeal may help others.

• If you are about to adopt, discuss any problems at the orphanage with your adoption agency. Try to get medical records ahead of time.
• Look for notes about measles and vaccines.
• If you have an internationally adopted child, review their medical records very carefully, find out when if/when your child had measles, and if/when they had their vaccine. Make sure your pediatrician has a copy of these records.
• If your child is exhibiting symptoms that have been labeled ADHD or hyperactivity and has been given medication, question the diagnosis.
• Even if your child has been with you for up to 10 years. if there is an issue with emotional outbursts and attention span, ask for diagnostic testing. Our daughter was with us for 5 years before her diagnosis of SSPE. Treatment started earlier may extend the life span.
• The only way to diagnose SSPE is to do an EEG, MRI, and a lumbar puncture. The spinal fluid is the key to the mystery. Don’t be shy to get a second opinion if your gut tells you something is wrong. As a parent, you know.
• Get online and review the website, “Jaxon’s Cure.” Jaxon was a beautiful little boy who also came to his family through adoption. He lost his like to SSPE at 8 1/2 years old. Educate yourself.
• There is no link between the measles vaccine and Autism. That report was totally false. The British doctor responsible for that report lost his medical license.

Measles can kill!

The bottom line, your child must have a measles vaccine. Having a timely vaccine is the only way to avoid SSPE. Adoption is a wonderful thing. Watching a child die from a preventable disease is terrible. Emmy hopes that no child gets SSPE.