How can my son’s persistent fits be managed?
Q: My 10 years old son is getting fits for the last nine years. We consulted many neurologists - some told us that he is suffering from cryptogenic west syndrome and some told that it is a case of bilateral optic nerve disease. During fits, he does not take food for 2-3 days and is unable to sleep. His legs and hands get tightened during fits. He is only able to speak a couple of words till date. How can my son’s persistent fits be managed?
A:West Syndrome is a severe epileptic disorder of infancy which denotes that the child is having the severe epilepsy called "infantile spasms", an abnormal EEG pattern, and mental retardation. The word cryptogenic is inappropriate, and the severe delay in the child indicates a cause. Complete recovery is rare.
Firstly, these children have difficult to control seizures. Appropriate medications in proper doses need to be used. If they fail, steroids or Inj ACTH can be tried, failing which your neurologist should consider ketogenic diet. I think you should consult a Child Neurologist since they have more experience in treating this disorder as it occurs in children.
Secondly, the child needs to uindergo daily occupational therapy, speech therapy and intervention. His development needs to be assessed to see the level of his mental and physical functions.
Thirdly, your neurologist will assess if his vision is affected due to damage to the occipital lobes of the brain or due to damage to the optic nerves.