Dillon S. - Quilt Finished in 2006

Born: October 8, 2002

Illness: Epilepsy and Possible Mitochondrial Disease

Dillon S.'s Story

written by mom Heather

Dillon was born October 8th 2002.  He was a very healthy 9 lb 2 oz baby.  Dillon didn't have any problems during the delivery, he did get stuck but they said that this wouldn't cause problems.  Dillon ate very well and even started on baby food at about 5 months old.  Dillon ate everything.  By the time he was a year old he was off of baby food.  Dillon sat up at about 6 months and crawled at about 9 months.  By the time he was 10 months he was walking around furniture and Dillon was walking by the time he was 12 1/2 months old.  Dillon was always a good baby and we never really had any problems with him.  Dillon never really was "sick" but he did get ear infections all the time.

Dillon started at a new daycare in May 2004.  He really seemed to enjoy himself there.  May 22nd of 2004 Dillon's aunt got married and he was the ring  bearer.  He did a great job and looked so cute.  That weekend he stayed with his godmother because his dad and I were also in the wedding and we had the parties and such to attend.  Dillon's godmother watched him a lot, when his dad and I were working.  His godmother, Janis, told me that he had been running a little temp and had a little diarreah.  We thought nothing of it, he was acting a little weird but we thought that maybe he was getting an ear infection or something.  We planned to just watch him over the next few days and then possibly take him to the doctor if he wasn't well by Monday. 

Sunday night (the 23rd) Dillon woke up screaming.  He didn't have a fever or anything.  I put his movie on and then he eventually fell asleep.  Dillon was always a really good sleeper so this was a little weird.  On Monday morning I watched him and he seemed fine.  He was happy, no fever and he was eating fine.  So I took him to daycare so I could run some errands.  I planned to pick him up early.  At about 3 pm daycare called and said that they couldn't wake Dillon up.  I though maybe he was just tired from the long weekend.  They said he was crying but he wouldn't open his eyes and he was stiff.  They thought that he had menegitis as stiffness is sign.  His godmother and I picked him up and drove him to the ER.  On the way there he started to have a seizure.  We were so scared we didn't know what to do.  When we got to the ER they were able to stop the seizure.  We were transfered to Children's and we were there for 2 days.  They thought that he had a febrile seizure and that he would be fine.  His MRI was normal so they sent us home, he was very out of it from the sedation. 

To make a long story short the next day (the 27th), Dillon had another seizure.  The ambulance tranferred us to Children's again.  His seizure lasted 3 hours and the only way that they could stop the seizure was to put him into a medical coma and hook him up to EEG.  When his brain started to slow down is when they would take him off EEG and then wean him off the vent and out of the coma.  They tried twice and were unsuccesful, he keep having seizures.  The third time worked.  Dillon was out of the coma and had to relearn everything.  Walk, crawl, sit up, eat, EVERYTHING.  Dillon was in the hospital for 2 months, this is including the time that we spent in the rehab clinic.

I spent the next year trying to find out what was wrong with my baby.  They kept saying infection.  I took him to Mayo Clinic in December 2005 and he received a diagnosis of Epilepsy and then due to the fact that the ventricles in the back of his brain are larger than normal they think that he may have a Mitochondrial Disease.  This is a big sign.  All the test that they have done have come back negative.  He will have a muscle biopsy done soon.

Written by Dillon's mom Heather in January 2006