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Troubles with ACTH

Wed, 12/07/2005 - 01:58
Hi all, Iam somewhat new to this websight. My wife and I adopted our son Luke at birth. Although Luke was born 5 weeks premature, he appeared healthy enough, and we were allowed to take him home at 3 days old. 3 weeks later he developed herpes simplex encephalitus and was airlifted to Childrens Hospital in Seattle. After spending almost 2 months in the hospital he was discharged in pretty good shape, although MRIs revealed some scar tissue left in his brain from the encephalitus. Naturally he was a bit behind developmentally at this point, but with lots of work from physical therapists and God he was progessing steadily. Suddenly at age 8 months he had the classic "jack-knife" seizures so commonly associated with Infantile Spasms, was brought back to Childrens, and quickly diagnosed with Infantile Spasms (or West Syndrome). Doctors immediately started him on ACTH therapy, and also prescribed him with zonegran, dapsone, oral acyclovir, and zantec before discharging us and instructing my wife and I to administer meds at home and keep most visitors away (due to his immune system being compromised from the ACTH). After 4 days on the ACTH, Luke appeared seizure free. We immediately informed doctors of this, but werent able to have a follow up appointment with neurology until day 10. At the appointment doctors confirmed that he was infact seizure free with an EEG and then ordered a "taper-down" off the ACTH. This taper would be for a 4 week duration before taking him completely off the drug. Luke never experienced many of the so common side effects that we expected from the ACTH. He didnt lose any sleep from it, and did not pose an increasingly irratible attitude. Infact, he slept more and actually ate much less. On day 20 however, this all changed. On day 20, Luke became enraged! He screamed all the time, was unconsolable, was not able to wear himself out, and quit both eating and sleeping. Luke always had high tone but now he was arching his back while in these fits of rage so bad that his feet could almost touch the back of his head. We quickly brought him back to Childrens and they ran a whole barrage of tests on him. Luke had everything from cat scans, x rays, MRIs, blood work, etc. Every test came back with good results. Doctors tried giving him high dose morphine and addavan, but all these drugs did was make him even more angry. Doctors were finally able to provide him the rest that he needed through medication for high blood pressure, and valium to relax his muscles. The new plan was to admit Luke, control his blood pressure, administer the valium, and shorten the duration for the "taper-down" off the ACTH. Things started going better for about 5 or 6 days. Luke was far from his normal self, but was getting some sleep and taking atleast a little milk from a bottle again. Unfortunately, he wasnt taking in enough milk, so they gave him an NGU tube. On day 7 of the "new plan", doctors discovered they miscalculated his blood pressure medication and Luke had been receiving 10 times the amount he was supposed to. (No wonder his heart rate would occasionally get freakishly low) Now, the plan was to pull him off the meds for the blood pressure for 24 hours before administering the correct dosage. This turned him into an absolute monster, but quickly got better about 48 hours later. Yesterday, (Day 13 of "the new plan), doctors re-visited the "quicker, faster taper-down" and decided to slow it down. They would now continue tapering him down on the ACTH for another 20 days, with his final shot of ACTH happening on Christmas day. I think they did this due to Luke's increasingly improving attitude, and doctors were planning on discharging my son tomorrow and leaving the rest of the treatment for my wife and I to be performed at home. Tonight we hit yet another low on the roller-coaster. Although we have performed GUIAK tests on his stools every day, we never received a positive result until tonight. This is very heartbreaking for me as it appears Luke has blood in his stool now. Im not sure what doctors new plan will be, but we will probably find out tomorrow. My wife and I have a strong faith in God and it has certainly helped make us strong through all of this. I just cant wait to get him off this darned ACTH!!!! I have my eyes on the big picture and feel very fortunate amidst all the side effects, that Luke has been seizure free since day 4 of ACTH treatment. I just worry that we are now messing him up in other ways. Has anybody else experienced any harmful side effects from ACTH therapy? Please share your story as it would really help. Thank you and God bless. -Bruce

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