Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Our son had IS when he was 2. He was on 4 AEDs, none helped, even phenobarb. They offered ACTH (injections) and they worked. It was wonderful. Vigabatrin is available now but has some severe possible side effects (perph vision loss). If they are infantile spasms ask for ACTH asap. Good luck Sent from my Verizon Wireless BlackBerry Re: Baby twitching Phenobarbital did nothing to stop my daughter's infantile spasms. (She has complex partials too.) Maybe your doctor could try something else for your baby. We had 21 months of seizure freedom on Keppra. It is a good med; it does not induce such drowsiness as some of the other seizure meds but it can cause a " rage " in some kids--my daughter's raging was brief with med increase only. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Working on that, but concerned because he has been on steroids for a few months now. Julissa Sent from my iPad > Our son had IS when he was 2. He was on 4 AEDs, none helped, even phenobarb. They offered ACTH (injections) and they worked. It was wonderful. Vigabatrin is available now but has some severe possible side effects (perph vision loss). If they are infantile spasms ask for ACTH asap. > > Good luck > > > > Sent from my Verizon Wireless BlackBerry > > Re: Baby twitching > > Phenobarbital did nothing to stop my daughter's infantile spasms. (She has complex partials too.) Maybe your doctor could try something else for your baby. We had 21 months of seizure freedom on Keppra. It is a good med; it does not induce such drowsiness as some of the other seizure meds but it can cause a " rage " in some kids--my daughter's raging was brief with med increase only. > > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Jus a thort, our girl had jus had her second lot of steriods and they still let her have the acth treatment as long as she had blood pressure taken every 2nd day, so they may do it afta a short break from the steriods. Gave Siera 3mths totally spam free but the thing we noticed the most was the huge improvement in her strength & development during that time and since then. Was so worth it. Email u more tonight. Cheers kat. -original message- Subject: Re: Re: Baby twitching Date: 08/02/2012 9:26 am Working on that, but concerned because he has been on steroids for a few months now. Julissa Sent from my iPad > Our son had IS when he was 2. He was on 4 AEDs, none helped, even phenobarb. They offered ACTH (injections) and they worked. It was wonderful. Vigabatrin is available now but has some severe possible side effects (perph vision loss). If they are infantile spasms ask for ACTH asap. > > Good luck > > > > Sent from my Verizon Wireless BlackBerry > > Re: Baby twitching > > Phenobarbital did nothing to stop my daughter's infantile spasms. (She has complex partials too.) Maybe your doctor could try something else for your baby. We had 21 months of seizure freedom on Keppra. It is a good med; it does not induce such drowsiness as some of the other seizure meds but it can cause a " rage " in some kids--my daughter's raging was brief with med increase only. > > -- > > > Quote Link to comment Share on other sites More sharing options...
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