Infantile spasms: a few questions and answers


Dear Dr,
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.

Thank You!









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.

Personal Regards,
Nitin Sethi, MD












Hi There,
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.










Dear K,
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.

Personal Regards,
Nitin Sethi, MD








4 thoughts on “Infantile spasms: a few questions and answers

  1. Hello,
    My son was diagnosed at 6 months. He never fully developed hypsarythmia but was showing some spikes on his eeg. We started ACTH immediately. His spasms stopped one day after treatment. His last shot is tomorrow morning. Our son is still doing small twitches but they do not look like his previous spasms. Once these started we took him to ER and his neuro admitted him for a 24h EEG which he continued to do this shoulder type shrugs. EEG confirmed his brain waves are normal and is not having hypsarrythmia or seizure activity. Once the brain waves are normalized and hypsarythmia is clear do they generally stay clear. Our son by the grace of God has not regressed. He is 8 months old, crawling and pulling up on furniture and opening books and playing with toys. I am still concerned about his random twitches. They are not in clusters and are usually just one and done. His neurologist has told us more than once they are not seizures. But what they are, we have not been told. Thanks and prayers to all going thru IS. Pray and thank God every day for the days we have with our little angels.

  2. I also forgot to add our sons is idiopathic, with no known cause after much work up, MRI, blood work , etc. and no regression prior or after treatment. My main questions may not have been very clear. Once the EEG is normalized, will it remain normal? Also, could he seizures turn into benign myclonus since he never had hypsarythmia ? Thanks again!

  3. Hi there my daughter has focal epilepsy which started at 4 months old and progressed to infinitile spasms at 6 months old, her spasaming stopped within 24 hours of vigabatrin, she’s now 19 months old she tends to.have her.normal partial seizures 1 every.few days for a few mins. She’s still.on vigabatrin as neuro thinks this may be controlling some of her normal Seizures she’s also on.topirimate (she did go 8 months seizure free doest seem to be.completely undercontroll) my question is what is the long term.outcome of a baby with IS and no cause for it? She’s 19 months old sits, commando crawls, will walk holding my hands, almost cruising furniture, speech seems delayed as only says dada and bubbles alot, feeds herself etc. Her development has slowed down since her epilepsy has been less controlled, but neuro seems to want to change meds or put them up much to.get more control

    Thanks for ur. Advice to

  4. History:

    On May 2013, Eighteen months (18) old child admitted in Qatar with high fever and vomiting. Doctor took lumber puncture and found infection in blood. Then they thought that it is Kawasaki disease and they have given I/V of Hemoglobin but child lost his consciousness day by day after 10 days child got status Epilepticus round about more than one hour. Then shifted to PICU and MRI and EEG also done then child diagnosed Meningoencephalitis but it is not confirmed Meningitis was Viral or Bacterial. So he was treated with these medications;

    Acyclovir for 21 days I/V Q8 H
    ceftriaxone IV 24 hours
    clarithromycin po 12 hours
    I/V Fluids

    Principal diagnosis: Meningoencephalitis with status Epilepticus
    Other diagnosis: Postictal encephalopathy , a typical Kawasaki disease
    Procedure: Lumber Puncture, MRI, EEG, ECHO

    After one month treatment child discharged from hospital and Neurologist advised Phenobarbital for 6 months and Keppra (Levetiracetam) 11 months. On January 2014 Kappra tapered down and totally stopped on March 2014. In April and May no seizure noticed but in June 2014 head drops and staring spells started. We consult doctor in Pakistan and he prescribed these medicines after EEG and MRI in August 2014.

    Dipodium (Valproic Acid) twice 4 ML
    Rivotril (Clonazepam) 2 drops twice
    Lerace (Levetiracetam) twice 2 ML

    Then seizures stopped till November but again started in December Head drops and staring eyes spells more than 100 times, Eye blinking, lips biting and convulsion in one arm sometimes. Further jerking in body while sleeping last for 1 to 2 seconds but after every minute, sometime kid awake due to jerking and then cry.

    Kid physical condition: Walking and running, memory are looks normal but having speech delay problem. Kid can speak ABC and numbers and some other vocabulary round 100 words but cannot speak full sentences. Now a days kid has severe constipation also. Sometime kid put his right leg inside while running.

    Now kid age is 3 years, Weight 17.5 Kg

    Questions: 1- We heard kids with head drops and staring spells can develop Lennox-Gastaut (LGS) which is difficult to treat?
    Questions: 2- His head dropping is 1 to 2 seconds is there any danger to brain damage or mental disability now or in future?
    Questions: 3- is his speech delay due to seizures?
    Questions: 4- Day by day sleeping jerks are increasing, are these normal?

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