This is Justin's story...On 12/20/07, Justin was rushed to Connecticut Children's Medical Center by the Life Star team, he was experiencing a long siezure and was turning blue.
Justin had received his four month immunizations on this date and we thought it was due to the shots. He spent 24 hours in the Pediatric Intensive Care Unit and then another 24 hours in the regular inpatient unit. Justin had an EEG done that was abnormal and we were told he may still have seizures. He was put on phenobarbitol and released. Over the course of the next 6 weeks, Justin experienced small seizures at home. On three different occasions he was brought to the ER for seizures that were prolonged. He needed an IV with medicine administered to stop these. We were told Justin had infant epilepsy but that there is always an underlying cause, and finding that cause may be difficult. Justin's medications were adjusted numerous times, until 1/29/08, when he was again rushed to the ER for a prolonged seizure. He was admitted to the hospital for 8 days. Justin was just released today :). Fortunately, Justin has had a normal MRI , but his EEG is still showing abnormalities on both sides of his brain. He is on two different seizure medications, but is still experiencing daily seizures, along with developmental delays. The neurologists say the most important thing is to get his seizures under control. Different blood tests are still being done to try and identify a cause. Justin meets with Birth to Three tommorow and we are hoping this will help with some of the develomental delays. This has been a very scary and emotional experience for my family, but we are staying strong and are remaining optimistic. Justin is a fighter and he will not let this get in his way!!!
I spoke with Justin's liver Dr. this evening. Although we had some information from his liver biopsy, which was just that his liver was saturated with iron, we have been awaiting results from the Mayo Clinic with further info. We received the info from Mayo Clinic tonight. The Mayo Clinic provided how many milligrams per weight of iron is in Justin's liver. The Dr. said there is no child index for this as it is so extremely uncommon for a child to have iron overload. The only index is an adult index. That index for iron ranges from 200 to 2400 with 2400 being on the high end of iron in an adult liver. Justin's number is 36,000. The Dr. said they have been and will continue to consult with Dr.'s across the country to try and figure this out. It is unheard of. The Dr. said Justin has to have been accumulating this iron since birth. This is also possiby bio chemical and related to Justin's overaall condition. They are determined to find out what and why.
The Dr. reported that although Justin's liver is damaged, he is safe. She said he is the same Justin he has always been, we just have more info. She believes that he will need chelation therapy which is used to extract toxic metals/iron from is organs. Justin will need a MRI spectrum scan to look at all his organs as it is likely there is iron overload in other organs. He has a cardiology workup scheduled in January to start looking at the heart.
Hoping we get some answers. This brings a whole new perspective to Justin and the underlying causes maybe to the seizures and brain development.