Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Hi - I've just been skimming mostly, but saw your post about the ACTH injections. We live in CA but last yr. took our then 5 yr. old son (dx Lennox-Gastaut) to see Dr. Chez and began an almost 3- month regime of twice daily injections of the ACTH. It was the most grueling experiences I've had & my son & I ended up moving out of our home and rented a separate place to shield my son from viruses that my preschool daughter might bring home (there was chicken pox going around & the general flu season). We were like an isolation ward- LOL!! Evan gained about 15 lbs. (if I can remember correctly) . Though he was a zombie from his absence seizures (almost continual) before the treatment, he was fairly high in language (also dx autism) but he became virtually catatonic from the treatment and lost all vocal utterances for almost two months. He had the swollen scrotum someone else mentioned and would claw at the cupboards to get food. He couldn't sit up /walk on his own and woke up every morning just drenched in urine (despite double layered " overnighters'). His potassium levels (also mentioned by someone) became perilously low. Dr. Chez told us that it would be " war " and that's often how it felt. Anyway, I'm not telling you anything that you haven't heard before or been prepared for - except perhaps the loss of language. I searched all over to try & find someone who'd had the same experience, but nobody had to the same degree. The good news is that it cleared up Evan's EEG remarkably from almost continual seizure activity to only abnormal nighttime EEG. Language came back and he just naturally lost the weight (after stopping the injections he almost immediately stopped the intense food cravings). It was a miracle to see our son out of the " fog " of the seizures he'd had prior to the ACTH tx. Anyway, sorry not much specific info - but I did want to let you know of another " ACTH story " . We started to Diet to be proactive in keeping the seizures at bay. Good Luck - keep on top of the labs & remember that many of the changes you see in your little guy will likely not last past the ACTH treatment. Say " hi " to Dr. Chez from Evan in CA! best Wishes - Seneca Quote Link to comment Share on other sites More sharing options...
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