Does anyone have positive results from ACTH treatment for infants?

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When my son was about 7 months old his eyes started rolling back in his head and his head would jerk to the side for just a split second. He was just starting to crawl at that point and thank the Lord I was able to catch it on video and take it to my pediatritian. He recommended that I see a neurologist and we did. after extensive tests Brevan's EEG was totally abnormal but every other test came back clean (MRI, CAT etc.). His doctor but him on Topamax a low dosage at first and gradually increased it. We finally got it a point where his seizures were reduced to a few a day. Then after a few months they began to change. No longer were his eyes rolling up but his body and arms would jerk to the side or front for a split second sometimes he had a few in a row, especially after just waking up and sometimes just randomly. After those started he also bagan having very short stare spells. They would last just a couple seconds. He would be smiling at you and then all of a sudden he would stop smiling and then start again as if nothing had happened. The neurologist added B6 to his Topamax meds but after a month we haven't seen to much of an improvement. He still has a mixture of a stare seizure and a quick jerk seizure everyday. He has developed normally except for his speech. He is 19months now and does not say any recognizable sounds. He does tend to be quite unstable on his feet and falls forward very easily. His balance is off but we don't know if that is from the meds or the seizures. Anyways the neurologist saw us again last week and said that he will give him another EEG test to see if there is any improvement in his seizure activity. If things aren't improved he wants us to think about giving our son the ACTH treatment and then Vigabatrin. (Our doc is also a proponant of the katogenic diet but our son is a bit yound for that now.) After reading all the stories about ACTH and the reoccurance of other seizures we are wondering if it is worth trying the ACTH? He has not officially been diagnosed with IS. He doesn't tend to have the big clusters of seizures. His seem to be a milder form but happen every day. Does anyone have positive results from the ACTH? Or have other suggestions. We are hesitant to give him the treatment if he might get other complications because of it.

Comments

Re: Does anyone have positive results from ACTH treatment for in

Submitted by healingwater on Sun, 2005-12-18 - 23:07

Hi, Iam sorry to hear of your son's seizures and although I cant tell you if ACTH is right for your child or not, I can tell you of my experience with it. We adopted our son Luke when he was born and at 3 weeks of age he developed HSV encephalitus. Basically it appeared that he was exposed at birth to the herpes simplex virus and it went to town on his body. He recovered amazingly well after a couple months of treatment, but was left with slight scarring in his brain from the episode. Everything was going ok, albeit my son was a little behind developmentally from his long episode in the hospital, but things went well until 8 months. At 8 months he had extremely mild seizures. Someone who had not previously been through the experience that we had might just pass them off as a normal reflex of some kind. My son would jerk slightly forward at the waist when we were holding him, and that was that. After noticing this the first time, we agreed to keep a close eye on it. After a few days, these "jerks" persisted and were now accompanied with his eyes "rolling back" when he would jerk forward. We knew something was wrong and brought him back down to Children's Hospital in Seattle. After many tests including EEG, he was diagnosed with IS and immediately started on ACTH and zonegran. He was actually started on the zonegran a couple days before the ACTH while doctors were running tests. We were warned of the many possible side effects of the ACTH during treatment, but Luke never really experienced them. Infact it was almost the opposite of what we expected. Instead of losing sleep and being irritable all the time, he seemed to sleep more. Also, instead of eating more, he ate much less. This might have been from the zonegran but we werent sure. After 3 days of ACTH, my son appeared seizure free starting on day 4. We scheduled another appointment as the doctors wanted to confirm the results with another EEG. Subsequent tests went great and Luke was started on a "taper down" off the ACTH starting on day 11. The "taper down" was to last for approx 4 weeks, but on day 20 of the ACTH, Luke's attitude radically changed. Now he was extremely irritated and never stopped screaming. He pretty much quit eating and he would arch his back and head so far backwards during his fits of rage that his feet were very close to touching the back of his head. We brought Luke back to the hospital to try and find out if there was something else going on. MRIs, x rays, EEGs, blood and lab work, spinal taps, etc all came back saying he was fine. Doctors knew that something must be done, and they concluded that he was now having some sort of adverse reaction to the ACTH. The trouble was, you cant just take a person immediately off ACTH without experiencing even greater side effects. Even though they felt he was having a reaction to the ACTH we had to continue giving it to him while they weaned him off the drug. Doctors tried giving him morphine and addavan to help him relax but it just seemed to irritate him even more. Doctors finally figured out that by controlling his blood pressure with clonodine and giving him supplements of valium that we could successfully control his temperament during his wean. Luke still has another week left of ACTH before he will be completely off of it. (the last shot happens on Christmas day) and he is not only still seizure free, but doing very well. We no longer give him valium and he has a "patch" to administer his clonodine until he is off the ACTH. His temperament is very good, he is smiling and laughing again, and were looking forward to getting off all meds hopefully. Bottom line is this for us. Although our experience with side effects of ACTH were very painful for our family to go through, I dont think it would ever over-shadow the fact that doctors (and us) achieved our goal with the ACTH- Luke was seizure free after 4 days and remains so for now. Although it has been a very rough road, Iam glad that he was started on the ACTH. I hope that this helps you in some sort of way and please know that we will include you in our prayers to the ultimate healer. God bless. Bruce

Re: Re: Does anyone have positive results from ACTH treatment fo

Submitted by brevansmommy on Mon, 2005-12-19 - 22:09

Thank you Bruce for sharing your experience with ACTH. I am so glad to hear that Luke is seizure free. It seems you had a good group of doctors. The potential side affects scare us but as you say we too have to trust the ultimate healer! Did you all every consider Vigabatrin? What made you decide not too? Eveline

Re: Does anyone have positive results from ACTH treatment fo

Submitted by Catlina on Tue, 2008-05-06 - 11:45

Hi Eveline, How is your son doing now? Did he go through ACTH treatment as you described? My son is 18 months old. 6 month ago, he was diagnosed to have seizure. My neuro has given him different medicine. None of them has worked on him. Dr. ask us to think about ACTH treatment for him. We would like to know more about this ACTH before putting him through. Your responses and comments are greatly appreciated. Thanks