My son is diagnosed with hypsarhythmia and he is 18 months. As of now we do not see notice any delay in his development.Is there a chance for developmental delay?? He is on ACTH treatment. His symptoms are Head Dropping.
Dear Mr.R ,
thank you for writing in to me. I am happy to learn that your son is doing so well and that you have not noticed any developmental delay or developmental regression. It suggests that his infantile spasms are well controlled. My advise would be to keep him under the close observation of his pediatrician and pediatric neurologist. At some point of time, they might like to repeat his EEG to assess seizure control. Sometimes a prolonged EEG study is very useful in this regard.
Our daughter is 18months, has had infantile spams since 2wks old. We have tried phenobarb, vigabatrin, nitrazepam, topirimate, b6, clobezam, epilim, lamotrigine & prednisolone. None have worked on our wee girl, her development is so far behind, she can sit & thats all, no reaching out, focusing etc. I am at my wits end with what to do next, Paeds dont seem to be really trying to get her sorted, Mri came back with no abnormalities, shes had bloods, urine & lumber puncture, all clear. Eegs show a lot of electrical activity. What do you think we should do? Im really wanting to get a second opinion & someone that will help us.
thank you for writing in to me. From what you tell me it seems your daughter’s seizures have proven to be refractory to multiple anticonvulsant drugs. Extensive investigative work-up revealed no cause for her infantile spasms. We call this condition cryptogenic or idiopathic infantile spasms (cryptogenic because a cause for infantile spasms is suspected but has not been identified).
I can understand your frustration K. This is what I advise. It might be worth the time and effort to have her evaluated at a comprehensive epilepsy center. Special diets like the ketogenic diet at times work wonders. Also some new drugs are now available. Acthar (ACTH) gel at times works–though it is frightfully expensive and may not be covered by insurance. Neurostimulation devices like the vagus nerve stimulator (VNS) can be tried though to my knowledge there is little data on its efficacy in infantile spasms.