Question: My daughter has been diagnosed with Infantile Spasms(IS) when she was 7 months. She was put on steroids - Omnocortil for one months and we wean her off in the same 1 month duration. After this , there was sleep EEG done and confirmed that its gone. We also did MRI , which had a few false positive triggers because of Steroids and we were not given MRI details as explanation for Infantile spasms. After two months , my baby started having jerks again, after getting up from sleep . They looked same like IS for us , we have done an eeg and this showed that there was subclinical slow wave ESCS for which Clobazam 5mg as given for 2 weeks, and after 2 week repeat EEG showed that the waves are under control and reduced to 30 % - 60% . We were advised to use Clobazam for 2 years. We had a repeat follow up last Saturday after 3 months. And we are totally confused :
1. My baby Jerks all time were same - she had clusters , after getting up from sleep fore few seconds and she was active throughout the seziures episode , meaning responds to sounds , looks at hands, try to listen to her name etc .
First time it was called IS , second time its name ESCS , and the jerks are still there , they did not stop . But Doctor said , let us take one more EEG to see if the subclinical wave is gone so that we can stop CLOBAZAM .
2. My daughter as GLOBAL development delay. Hypotoni - mostly the upper part.
We are doing Physiotherapy for 5 months now , but all she could now do is roll over the entire house. Cannot lift head fully , cant sit / crawl etc
But she sleeps without trouble, no abnormal behavior , no hyper behavior, no drooling, used to clap , now stopped, knows to say no , non verbally , makes various sounds.
3. Is it not important to first stop the jerks ? These jerks now a days are one or twice in a day , they are not seen every time when she wakes up , but happens in random . However, should we not attempt to get these stopped first ? Why will my baby pick up on development ?
4. Also baby does not give continuous eye contact , she looks , at us occasionally , smiles regularly , recognizes family and strangers . Get angery / upset , etc But does not really keep on looking at things .. they said she had CVI - but she looks at screens , rhymes , some objects as per her wish, follows us in the rooms etc .

I really doubt , if the original episode was IS , in the first place and i really doubt if CLOBAZAM is of any good :( The EEG reports looks the same throughout for us and apparently we had been seeing a very XXXXXXX doctor in pediatric neurology with specializations in epilepsy . So we doubt the entire diagnosis and not sure about anything .

Thank you Doctor , based your reply I would like to further ask
I am using Clobazam from XXXXXXX ( 5 mg in the night ) . But so far the jerks have not gone fully . They are still there. There are days when she gets jerks every time she wakes up and there are days when she does not get even one jerk after waking up . It varies and there is no pattern .
My doctor said she would not want to be concerned about them because there is no pattern and it was more important to handle slow wave in eeg than subclinical seizures.
1) I am highly skeptical about this . Now should I continue Clobazam or should I move on to proxy consultations for other medication ? No other medicines is given apart from Clobazam . We have also done the baby shield when baby was born and there were no abnormalities in any of her blood/ urine related tests . No Chemical or metabolism issues as well .