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Vigabatrin vs. ACTH???
Fri, 01/07/2005 - 23:09My 15 month-old son has had infantile spasms since about 6 months. He developed normally until that point. Now he is delayed in his speech and congnative skills, he's at about a 7 month level He has been on Keppra, it did not stop the seizures, in fact, he was worse on it. He has recently been on Topamax, but it too has not stopped the seizures. The doctors now want us to make the choice to put him on ACTH or Vigabatrin-both of which may have bad side effects based on all that I have read and been told. I'm a new user to this site and am looking for any input about these drugs and infantile spasms, I don't know anyone familiar with IS (except docs) so any input would be much appreciated-we are feeling very alone with this condition at the moment. So if anyone has any experience or information it would be of much help as we are very worried about what we should do!
Thank you!
Comments
RE: Vigabatrin vs. ACTH???
Submitted by tarikata on Mon, 2005-01-03 - 18:48
Hi there. I'm sorry to hear your son has infantile spasms. My son is also 15 mos. old, and he was diagnosed with infantial spasms at 10 mos. We have tried Vigabratrin, Zonegran and Topamax. Unfortunately, none of these meds reduced or made him seizure-free. He has a follow-up appt. with the neurologist this Friday, and we are taking on a more aggressive approach. The doc recommends prednisone (a mild form of ACTH and is taken orally, not an injection) because he has had success treating his patients with infantile spasms. I'm hoping and praying that my son will react well to this med even though the side effects are a lot more severe than the other three I mentioned earlier....
I wish you the best of luck with your son. Just know that you are not alone. I felt that way a few months ago until I registered in this website.
Hi there. I'm sorry to hear your son has infantile spasms. My son is also 15 mos. old, and he was diagnosed with infantial spasms at 10 mos. We have tried Vigabratrin, Zonegran and Topamax. Unfortunately, none of these meds reduced or made him seizure-free. He has a follow-up appt. with the neurologist this Friday, and we are taking on a more aggressive approach. The doc recommends prednisone (a mild form of ACTH and is taken orally, not an injection) because he has had success treating his patients with infantile spasms. I'm hoping and praying that my son will react well to this med even though the side effects are a lot more severe than the other three I mentioned earlier....
I wish you the best of luck with your son. Just know that you are not alone. I felt that way a few months ago until I registered in this website.
RE: Vigabatrin vs. ACTH???
Submitted by EvansMommy on Fri, 2005-01-07 - 22:29
My 14 month old son was diagnosed with Tuberous Sclerosis when he was 4 months old. At that time he was only having staring seizures (also known as partial complex seizures). He was put on Tegretol, which seemed to work until October 2003, when my husband and I started noticing the weird jerking movements. Later to find out, it was Infantile Spasms. He was immediately put on ACTH. It seemed to work for about 3-4 days and then he would have a few, and then another 3-4 days would pass and he would have another one. They have increased the ACTH several times, and it still has not been working. Just within the past few weeks, they put him on Topamax. He is still having 1-3 episodes a day. We were told about the Vigabatrin, but I have not heard anything good come out of it, from what I have read. Evan weights about 33.5 pounds now. The ACTH makes him hungary all the time. Within the past few weeks we have noticed that he is starting to lose some of the speech he had previously learned. He is real quiet now, just sitting and keeping to himself. Its like some of the things that he has learned, he has forgot overnight. At times he is real lovey, and the next minute, he is screaming, for no apparent reason. I thank GOD everyday for my little boy. I know that I am not the only one going through this. Hope everything turns out ok with your son!! Keep in touch and GOD Bless!
EvansMommy
My 14 month old son was diagnosed with Tuberous Sclerosis when he was 4 months old. At that time he was only having staring seizures (also known as partial complex seizures). He was put on Tegretol, which seemed to work until October 2003, when my husband and I started noticing the weird jerking movements. Later to find out, it was Infantile Spasms. He was immediately put on ACTH. It seemed to work for about 3-4 days and then he would have a few, and then another 3-4 days would pass and he would have another one. They have increased the ACTH several times, and it still has not been working. Just within the past few weeks, they put him on Topamax. He is still having 1-3 episodes a day. We were told about the Vigabatrin, but I have not heard anything good come out of it, from what I have read. Evan weights about 33.5 pounds now. The ACTH makes him hungary all the time. Within the past few weeks we have noticed that he is starting to lose some of the speech he had previously learned. He is real quiet now, just sitting and keeping to himself. Its like some of the things that he has learned, he has forgot overnight. At times he is real lovey, and the next minute, he is screaming, for no apparent reason. I thank GOD everyday for my little boy. I know that I am not the only one going through this. Hope everything turns out ok with your son!! Keep in touch and GOD Bless!
EvansMommy
RE: Vigabatrin vs. ACTH???
Submitted by TEDB on Mon, 2004-12-27 - 08:12
I'm new to this site also my wife and myself have a daughter who is 4 1/2 she has infentile spasms sence she was about 2 months old. We tried the acth this worked for about 8 months. she was on about 4 other seisure medications in the past 2 years and to about a dozen doctors. At this time we are trying the keito-diet and it seems to be working. our neurologist sugested it because the medications were not working. Valerie also has a delayed learning situtation at four and a half she is at about 1 1/2 to 2 year old level. The diet isn't easy but has been proven many times over, may want to ask your doctor what his thoughts are on the diet.
I'm new to this site also my wife and myself have a daughter who is 4 1/2 she has infentile spasms sence she was about 2 months old. We tried the acth this worked for about 8 months. she was on about 4 other seisure medications in the past 2 years and to about a dozen doctors. At this time we are trying the keito-diet and it seems to be working. our neurologist sugested it because the medications were not working. Valerie also has a delayed learning situtation at four and a half she is at about 1 1/2 to 2 year old level. The diet isn't easy but has been proven many times over, may want to ask your doctor what his thoughts are on the diet.