Children with this disease do not learn any developmental milestones and usually are confined to a wheelchair for life. They also manifest uncontrollable behaviors that lead them to self injury. This type of behavior requires utilization of self protective devices to protect these children from themselves to make them feel safe.
Seizures can also be found in children with Lesch-Nyhan disease.
On the evening of 10/25/2017 at approximately 10:00pm Matthew’s mom was getting ready for bed. She decided to take one last look at the baby monitor in her room before falling asleep. Matthew was having a seizure. These seizures don’t come with warning signs and are always silent. Mom tried to do everything to assist him out of the seizure. She finally had to call 911. He was taken by ambulance from his home, transported to the nearest hospital, then lifeflighted to a children’s intensive care unit. He is now in the hospital with frontal lobe damage from a three hour (or more) continuous seizure that medical personal were unable to control. Matthew was finally put into a medically induced coma so his little body could rest. Matthew was awakened only to have more seizure acivity. At this time, the doctors are saying that seizure activity will continue to be uncontrolled until his brain has time to heal...if it heals.
Just imagine what the outcome would have been had his mom not looked at the monitor one last time. Seizures this severe can cause sudden unexpected death in epilepsy (SUDEP), a fatal complication of epilepsy. It is defined as the sudden and unexpected, non-traumatic and non-drowning death of a person with epilepsy.
Matthew’s mom will need assistance to monitor his seizure activity. As the seizures will be reoccurring. Monitors of this type can cost up to $1,000 dollars. They do send alerts to the parents with 15 seconds of continuous movement....an alert that could save this little guys life.
The doctor has also recommended trying to get a service dog to assist Matthew with seizure activity. Some of these dogs can sense when a seizure is coming. They usually stay by the person for comfort and protection. They can also alert others upon seizure activities. These dogs are very expensive and require a lot of training. The cost of them can be up to $20,000 dollars. This does not include any expenses that family would have to put out to travel and bring the dog home.
If there is anything you can do to assist this family it would be greatly appreciated!!...
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