FamilyConnect®

For parents of children with visual impairments

Message Boards

Posted by Cole's Mom on 6/21/2009 7:22:29 PM.

There are currently 0 replies.

• 
  1 . Re: Infantile spasms and CVI
  Posted by garrettbaer on 06/21/2009
  
  Hi - my son also had infantile spasms - we were successful in controlling them with ACTH - have you heard of that? I'm not sure what it did to his vision - but the spasms went away.
  
  -Valerie
  
  
  
• 
  2 . Re: Infantile spasms and CVI
  Posted by BJackel on 06/21/2009
  
  My son too had infantile spasms at 8 months old, he was a 28 wk. preemie. Luckily he was immediately (after 2 days) put on ACTH which also helped immediately. He was also given phenobarbital and a diuretic to help with the bloating, he gained 4 lbs. literally overnight. He was on all of the meds for 3 months. We have never seen another seizure, he is now 18.
  
  
  
• 
  3 . Re: Infantile spasms and CVI
  Posted by Cole's Mom on 06/23/2009
  
  We haven't tried ACTH but we did try another steroid, Prednisolone, to no avail. Cole's neurologist said that if the Prednisolone didn't help, ACTH wouldn't either, but since we have tried just about everything else maybe he would reconsider prescribing that for Cole. Did either of you notice a decrease in vision while your children were still having the seizures?
  
  
  
• 
  4 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 06/23/2009
  
  i would ask the neurologist to please try him on the ACTH - our children are all one-of-a-kind and often react differently than expected.
  Judith
  
  
  
• 
  5 . Re: Infantile spasms and CVI
  Posted by BJackel on 06/23/2009
  
  Hi again,
  
  My son's seizures stopped immediately although we did not see any development, vision included, until he was off the ACTH.
  Bernadette
  
  
  
• 
  6 . Re: Infantile spasms and CVI
  Posted by garrettbaer on 06/23/2009
  
  Hi again,
  My son had a severe encephalitis at age 1. He showed progress (vision and development) only after the 2nd round of seizures. First was the infantile spasms - which he had ACTH for and then about 4 months later another type which he took Tegretol for - and that worked very well. After starting the Tegretol he made some great gains.
  
  Not sure if that helps.
  
  -Valerie
  
  
  
• 
  7 . Re: Infantile spasms and CVI
  Posted by andi on 06/23/2009
  
  Could you explain what the spasms are and what they look like?
  
  Thanks, Andi
  
  
  
• 
  8 . Re: Infantile spasms and CVI
  Posted by BJackel on 06/24/2009
  
  Hi Andi,
  
  My son's spasms went like this: His head would fall back, his arms would go out to the sides and stiffen, his trunk would stiffen then his legs would stiffen. He would 'relax' and it would start all over again. They were very subtle and I tihnk we could have easily missed him if I hadn't been holding him the first one he had.
  
  
  
• 
  9 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 06/24/2009
  
  Hi Bernadette,
  Thanks for sharing your experiences with your son. Your explanation was very clear and vivid.
  Judith
  
  
  
• 
  10 . Re: Infantile spasms and CVI
  Posted by Cole's Mom on 06/25/2009
  
  Thanks everyone - I'm encouraged that so many others did make significant gains after the seizures. I'm definitely going to push for the ACTH.
  
  As for what the seizures look like, that was a great description.
  
  
  
• 
  11 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 07/04/2009
  
  hi Cole's Mom,
  Glad that we "old timers" could be helpful. Please keep us posted on his progress.
  Judith
  
  
  
• 
  12 . Re: Infantile spasms and CVI
  Posted by jbillig on 07/21/2009
  
  Our daughter was diagnosed with IS at 6 months and after putting her on phenobarbital the neuro started her on prednisone which did absolutely nothing for her. She then went on the ketogenic diet and that changed her seizures but did not stop them, ultimately it was the ACTH. The night after the first injection she had the worst episode I've ever seen and that was it. She has been seizure free since November.
  
  
  
  
• 
  13 . Re: Infantile spasms and CVI
  Posted by andi on 07/23/2009
  
  Does anyone notice a particular time of day when your kids get the spasms? I'm pretty convinced that my daughter may have them. I saw online that many have them upon waking, but Molly seems different. Closer to the end of the day around bedtime, she arches her back, throws her head back and stiffens all her limbs repeatedly. She has a follow up at the neurologist next month and I'm going to bring it up.
  
  
  
• 
  14 . Re: Infantile spasms and CVI
  Posted by BJackel on 07/24/2009
  
  If you think your child is having IS, get to the neurologist IMMEDIATELY. They are a type of seizure that causes damage. The sooner they are stopped the better off your child will be.
  
  
  
• 
  15 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 07/28/2009
  
  Hi Bernadette,
  Thanks for reminding us about getting to the MD early if you think your child is having IS.
  Judith
  
  
  
• 
  16 . Re: Infantile spasms and CVI
  Posted by garrettbaer on 07/28/2009
  
  I agree - go immediately! The docs told us that we caught it early before the were 'set up' and that was probably why the ACTH worked for our son.
  
  -Valerie
  
  
  
  
• 
  17 . Re: Infantile spasms and CVI
  Posted by jonalicat on 08/24/2009
  
  hi my daughter started with seizures in sept last year in total she has had 3 grand mal they are looking at epilepsy they were stiffness ,moaning ,foaming at mouth,funny breathing then she would come out of it and sleep for hours drs still not convinced only recently been diagnosed as having visual cortex disorder/cvi
  
  (This post was edited by the author on 08/24/2009 )
  
  
  
• 
  18 . Re: Infantile spasms and CVI
  Posted by Cole's Mom on 08/25/2009
  
  Based on everyone's good experiences with the ACTH, we insisted on starting Cole on it, and he has been getting shots for a week now. The seizures still aren't gone, but we are down to about 3x/day now, which is far better than it was, and our neurologist said that the full extent of the results isn't always known until about 2 weeks in, so we still have a shot at getting down to 0. I did want to ask where Bernadette heard that these seizures cause damage, though -- when Cole was first diagnosed I specifically asked our neurologist that, and he told me they would NOT cause more damage, and that due to the serious potential side effects of ACTH (like heart failure) we were better off trying some other things first... Cole has been having these seizures for a full year now while we have tried other treatments, so if the seizures do cause additional damage and we are only now getting to the ACTH I just may be sick...
  
  
  
• 
  19 . Re: Infantile spasms and CVI
  Posted by xtex97 on 08/26/2009
  
  My daughter was diagnosed with IS, a.k.a. West Syndrome @ six months old. We did a six week intensive treatment of ACTH, which at the end of the VEEG showed there was no improvement. We then began a combination therapy of Phenobarbital and Keppra. A new study was released last year that showed that Keppra had been successful in ending IS in children with injuries resulting from a Hypoxic Ischemic Event, such as my daughter. Four months later, another VEEG confirmed that the spasms were gone.
  
  
  
• 
  20 . Re: Infantile spasms and CVI
  Posted by BJackel on 08/26/2009
  
  Hi,
  
  Here's are two article's re: Infantile Spasms, there are many more available if you google IS.
  
  http://www.epilepsy.com/epilepsy/epilepsy_infantilespasms
  
  http://www.ninds.nih.gov/disorders/infantilespasms/infantilespasms.htm
  
  The second article is not quite as grim a picture as the first. I was originally told that they are damaging by my neurologist. I beleive that is why we chose ACTH even though it was a fairly new drug at the time. We were lucky that it worked right away.
  
  Thanks for asking the question, I didn't know they were thought to be a form of epilepsy, that's my new knowledge for the day :-)
  
  Bernadette
  
  
  
  
  
• 
  21 . Re: Infantile spasms and CVI
  Posted by Cole's Mom on 08/26/2009
  
  Thanks Bernadette. None of the articles I have seen on IS mention further damage caused by the seizures, so I'm going to hope that maybe the doctors' understanding of these seizures has changed. But I'm definitely going to pose the question to our neurologist again, as it will impact how we proceed if the ACTH doesn't work. We have tried just about everything (Phenobarbitol, Prednisone, Topimax, Keppra, Ketogenic diet, and now the ACTH) but have avoided Vigabratin because it can cause loss of peripheral vision. We didn't want to risk this because the periphery appeared to be Cole's only field of vision before the seizures started. But if he is getting further brain damage, I think risk of permanent blindness is the lesser of the two evils. I really wish decisions on how to care for our kids did not have to be so hard or have so much at stake.
  
  
  
• 
  22 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 08/28/2009
  
  Hi,
  Over the last 30 years the medical knowledge of seizures (and many other things) has changed from time to time. My mother would tell you that is why it is called "practicing" medicine. At one time it was thought that every seizure that happened increased the probability of more seizures geometrically. The emphasis was on preventing a second seizure by use of medication. I believe that now they differentiate between different types of seizures and do not believe that they all automatically cause brain damage. However, as in many areas there are often two or more schools of thought. Sorry I can't give you a more definite answer.
  Judith
  
  
  
• 
  23 . Re: Infantile spasms and CVI
  Posted by BJackel on 10/13/2009
  
  http://www.infantilespasmsinfo.org/
  
  I just received a message with the above website on Infantile Spasms and thought you would all be interested.
  Bernadette
  
  
  
• 
  24 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 10/13/2009
  
  Thanks Bernadette.
  Judith
  
  
  
• 
  25 . Re: Infantile spasms and CVI
  Posted by Cole's Mom on 10/14/2009
  
  Hmm. Looks like the medical community is still split. I did end up asking my neurologist again, and he said it is the length of a seizure, and not the type (i.e. IS or not IS) that poses the risk of further damage. So who knows. But I'm happy to report that over the past two weeks, Cole's seizures seemed to have stopped altogether. So we aren't going to have to worry about whether or not to try the Vigabitrin!
  
  
  
• 
  26 . Re: Infantile spasms and CVI
  Posted by Judith Lesner on 10/14/2009
  
  So glad to hear about the infantile spasms stopping for Cole. It is so wonderful to hear good news. thanks for sharing.
  Judith
  
  
  
• 
  27 . Re: Infantile spasms and CVI
  Posted by tasibre on 01/13/2010
  
  my son cole who is 2 1/2now also has CVI and IS, he started seizures at 2 days old, but at 3 months old, he started these diff. ones, none of the docs in syr believed me just said hes getting worse, and he cant have IS because he already has epilepsy,it took me months to convince his neuro these were diff. then finally the EEG showed the hyps. but we did the acth, it stopped the spasms but the hypsa are still there, we tried the keto which has helped for a while, then we heard of HBOT, which helped TONS, he actually went 3 days w/o a seizure, that never happenned b4.he looked at me, he smiled for the first time at 1 1/2 yrs old, he started crying and moving around! cole was also dx'd with CVI at 8 weeks old and the IS at 6 months. our vision tchr had cole see a low vision specialist who gave cole glasses to try to help bring things in focus, we've had them 6 days and you can see a difference, hes looking at things alot, when hes sick and we cant get into the tank, the saeizures come back alot, so we are considering the VNS, hes usually has up to 100 seizures a day, after HBOT down to about 5-30 a day, maybe this will help even more, and get him off some of the 5 seizure meds hes on. hes very delayed but has started doing little things which are huge to me, that smile was worth everything to me!!
  
  
  
• 
  28 . Re: Infantile spasms and CVI
  Posted by BJackel on 01/13/2010
  
  Glad to hear things seem to be improving...I love your positive attitude and the appreciation you have for the small steps our kids make! That smile can make your day!
  All the best,
  Bernadette
  
  
  
  

Post a new response | Track this topic by e-mail | Return to top of the comments