Infantile Spasms—
Jason’s Story

     


Jason, at left at 9 months (March 1997) at the height of his ACTH therapy,
and at right at age 10 (June 2006), sporting his "swim team haircut."

This site is written for Jason by his mom, Marie. His story is one of hope.

DISCLAIMER:  I am NOT a medical professional.  I CANNOT give you any advice on how to treat your child. I cannot put you in touch with his doctor.  I can only tell you about our journey.

Jason's History:  Jason was born June 5, 1996. He was a happy, easy-going, and responsive baby. In December 1996, he got a cold--we thought. He was congested, but also exceptionally listless. On Christmas Day 1996, Jason and his brother (Eldon) were in the tub. Jason was in a Fisher Price Bath Ring, and he suddenly started dropping his head several times in succession, face-planting into the hard plastic ring. I just thought he was extremely tired from the big day. He seemed to be fine after that, but still kind of "out of it." The first week in January, the boys were at their Grandma’s (my mother in law) while I was at work, and she noticed the same "head-klunking" (as we called it) motion. She alerted her daughter, a nephrologist (kidney doctor), who sent us to Jason’s pediatrician. Jason would not perform on cue for the pediatrician, so we were sent home. His seizures--though we were in denial at that point and did not call them seizures--seemed to go away until the last week in January. This time the pediatrician ordered a neurological profile.

Jason met with his neurologist on Feb. 11, 1997 (8 months old). He suspected infantile spasms, and Jason was sent immediately for an EEG. The neurologist’s call at 9 p.m. sent our world into a tailspin. Jason had infantile spasms. As my heart sank into my feet, we were given all the grim statistics (regarding the slim chances for total recovery) and told to report to the hospital the next morning. We spent three days in hell there, learning to administer ACTH by injection, having an MRI and other tests, etc. We were utterly relieved that the MRI showed a normal brain with no reason for the seizures (cryptogenic), which gave us the best (of slim) chances that for a normal life. On Valentine’s Day 1997 we took Jason home. We were devastated and in shock.

Jason’s last seizure was February 16, 1997. It was like the finale of a fireworks display, the grandest and longest of them all. I remember holding him, crying, thinking he would never stop. Once the seizures stopped, Jason "returned." He started to come out of the fog, and was able to finally sit upright. He spent the next 10 weeks on ACTH, suffering the bloating and voracious appetite, though we were spared the fussiness and other unpleasant side effects. My sainted mother-in-law came over every morning during those 10 weeks to help me give the shot because Rob (her son and Jason's dad) passes out at the mere mention of the word "needle" (don’t even get me started on what happened when we were in Lamaze class and they talked about epidurals).

After going off ACTH, Jason needed help with all of his motor skills. He was atrophied from spending 10 weeks as an ACTH "beach ball." When he began physical therapy once a week in April 1997 (almost 11 months old), he could do virtually nothing with his hands and could support no weight on his arms. Rolling over and crawling were impossible. He could sit and play with things within his reach, but that was it. He could not hold a spoon or even his bottle. Through therapy, he learned to crawl, walk, and improved his fine motor skills. He went through speech therapy, and has progressed from using sign language and his own language, to the speech patterns typical of a three-year old, to talking nonstop and using words like "luminescent," "Cretaceous," and "omnivorous" correctly!  His neurologist has said if he can get to 4th grade (age 9) without further seizure activity and without any learning disabilities cropping up, we can consider the worst of the danger over.  We have reached that point, so I guess I should breathe a little easier, but I still find myself looking over my shoulder.

Today, September 2006. 9 1/2 years after Jason's diagnosis, he has just started fifth grade.  He is in a regular fifth grade class (with a 504 plan for some minor needs), and is at or close to grade level in all academic areas.  We are awaiting the results of the state standardized tests he took in 4th grade.  He can run, jump, ride a bike, swim, roller-blade, ride a scooter, etc.  He swims on a summer league swim team, and is a breaststroke specialist.  This past winter, we had him in year-round swim team and it did wonders, not only for his swimming, but also helped him in school.

Jason loves to draw and do art projects; play GameCube; and collect Pokemon cards, Hot Wheels cars, and Lego Bionicle sets.  He is endlessly fascinated by dinosaurs and marine life.  He is working on his Webelos requirements in Cub Scouts.  In short, a very typical boy.  This is thanks directly to all the hard work, physical therapy, speech therapy, and dedication on the part of Jason's family members.  There are times that I actually forget what we've gone through to get here.  He is our miracle!

Where we are going:  We can't really anticipate what Jason might do or might not do, because we never found a cause for the infantile spasms (called cryptogenic spasms), and we do not know what parts of the brain were damaged by the spasms.  We do know that brain damage did occur—Jason's neurologist said that infantile spasms DO cause brain damage—but we don't know where, or if it will cause any problems later in life.  His neurologist also said that we should treat Jason as a child who is at risk for learning disabilities.  This means keeping him involved in educational activities.  For us this meant early intervention services, swimming lessons, and preschool until he started elementary school.  We had him in full-day kindergarten (an optional program in our school district) so he could have extra educational experiences.  Now, in fifth grade, we continue to emphasize reading, writing, classroom participation, playing outdoors, and swimming.  His 504 plan, named for Section 504 of the Rehabilitation Act of 1973, ensures he gets what he needs to succeed in school, and provides accommodations in environmental, instructional, and psycho-social areas.

All of these activities have contributed to his progress.  He especially benefited from the 504 plan and swimming year-round.  My advice:  don't give the child a chance to stagnate developmentally.  Jason's outcome is rare, but it is the outcome we wish for for every child.

Some things to keep in mind:

If I can only give one piece of advice to parents with children going through IS it is this: get early intervention as soon as possible! It has made all the difference in the world for Jason! I've pretty much told you everything we know in this website, however, you may e-mail me (with the words "Infantile Spasms" in the subject line) if your life has been touched by a child with infantile spasms and you would like to comment.

Our Family

Rob (bottom left), Eldon (top), Jason (center), and Marie (right)

October 2006

  

Jason at a swim meet (June 2006)

E-mail me if you have questions or comments about this site.  Please remember to use the phrase "Infantile Spasms" in your subject line (or my spam filter might filter it out).