Guest guest Posted February 6, 2012 Report Share Posted February 6, 2012 Around the time that my son was having infantile spasms he also had these twiches, mostly in his facial expressions but they went away around the same time as the spasms went away (after a 6-week treatment of prednisolone). His twitches didnt seem to bother him but he would lose focus on whatever he was doing. Good Luck, Esther > ** > > > My 9 month old baby has partial seizures and infantile spasms. Through > meds including steroids they have been mostly controlled. However, now he > is having body twitches. Sometimes his hands will slap down and his facial > expression will change. He is also having facial twitches. These seem to > bother him very much. He will moan. The docs increased the pheno, but there > was no improvement. Not sure if they are reg seizures or spasms. Has anyone > had any experience with this? > > As for his weight he has gained over a 1lb in the last few weeks. Thanks > for all the help. > > Thank you, Julissa > > Sent from my iPad > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2012 Report Share Posted February 6, 2012 Thanks. My son has been on prednisolone for some time now. I haven't seen his usual jack knife spasm in a few days. He was down to just a handful a week. Not sure if they are changing or just adding theses new twitches. His doctor has been out of town and his coverage was not what I would call attentive. She is back today. Hope we can help him. I did not think that increasing the pheno was going to work, but i let them try. It was better than increasing the steroids. Hope his levels are in. The twitches seem more a spasm. I feel so bad for him. Julissa Sent from my iPad > Around the time that my son was having infantile spasms he also had these > twiches, mostly in his facial expressions but they went away around the > same time as the spasms went away (after a 6-week treatment of > prednisolone). His twitches didnt seem to bother him but he would lose > focus on whatever he was doing. > > Good Luck, > Esther > > > >> ** >> >> >> My 9 month old baby has partial seizures and infantile spasms. Through >> meds including steroids they have been mostly controlled. However, now he >> is having body twitches. Sometimes his hands will slap down and his facial >> expression will change. He is also having facial twitches. These seem to >> bother him very much. He will moan. The docs increased the pheno, but there >> was no improvement. Not sure if they are reg seizures or spasms. Has anyone >> had any experience with this? >> >> As for his weight he has gained over a 1lb in the last few weeks. Thanks >> for all the help. >> >> Thank you, Julissa >> >> Sent from my iPad >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2012 Report Share Posted February 6, 2012 My son also got really upset with each spasm. If you are not sure if what you are seeing is a spasm or not I would try to video it and bring the video clip in to the Neurologist. Our Neuro had asked us for video clips of the spasms. Good Luck, I hope the spasms go away soon, Esther > ** > > > Thanks. My son has been on prednisolone for some time now. I haven't seen > his usual jack knife spasm in a few days. He was down to just a handful a > week. Not sure if they are changing or just adding theses new twitches. His > doctor has been out of town and his coverage was not what I would call > attentive. She is back today. Hope we can help him. I did not think that > increasing the pheno was going to work, but i let them try. It was better > than increasing the steroids. Hope his levels are in. The twitches seem > more a spasm. I feel so bad for him. > > Julissa > > Sent from my iPad > > > > > Around the time that my son was having infantile spasms he also had these > > twiches, mostly in his facial expressions but they went away around the > > same time as the spasms went away (after a 6-week treatment of > > prednisolone). His twitches didnt seem to bother him but he would lose > > focus on whatever he was doing. > > > > Good Luck, > > Esther > > > > > > > >> ** > > >> > >> > >> My 9 month old baby has partial seizures and infantile spasms. Through > >> meds including steroids they have been mostly controlled. However, now > he > >> is having body twitches. Sometimes his hands will slap down and his > facial > >> expression will change. He is also having facial twitches. These seem to > >> bother him very much. He will moan. The docs increased the pheno, but > there > >> was no improvement. Not sure if they are reg seizures or spasms. Has > anyone > >> had any experience with this? > >> > >> As for his weight he has gained over a 1lb in the last few weeks. Thanks > >> for all the help. > >> > >> Thank you, Julissa > >> > >> Sent from my iPad > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 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 Keppra did nothing for our son. He is on topomax and prednisolone for spasms. Meeting with doc on Thurs. Our son also has seizures, so it could be seizure related. hope we can find something to help him. Julissa Sent from my iPad > 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 Gives me hope. I would love to see Drake stronger and happier. Seeing neuro on Thurs. She seems to have a plan. My boys are watching an Einstein video. Lex is surprisingly into it and Drake is very attentive. They seem to be enjoying each others company. So sweet. So worth it. Julissa Sent from my iPad > 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...
Guest guest Posted February 7, 2012 Report Share Posted February 7, 2012 Will b a week foe it nex wk, we seeing neuro mon. Kol let me knw how it goes. Awh thats cute! And gr8 to hear. They are def worth it. Talk soon. Kat -original message- Subject: Re: Re: Baby twitching Date: 08/02/2012 1:12 pm Gives me hope. I would love to see Drake stronger and happier. Seeing neuro on Thurs. She seems to have a plan. My boys are watching an Einstein video. Lex is surprisingly into it and Drake is very attentive. They seem to be enjoying each others company. So sweet. So worth it. Julissa Sent from my iPad > 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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