Jenelle's Journey

ACTH Treatment - Week 2

Today is Jenelle's 14th day on ACTH. Last Wednesday we increased the dose to 50 units a day, and her seizures decreased a little more, but she still has one or two a day. Last Thursday she had trace blood in her urine, so we did a urinalysis and it was normal.

Yesterday, we saw our Neurologist Dr. Phillips for a follow up visit. He was not happy that her seizures have not ceased, and is inclined to wean her off ACTH and start Vigabatrin. When we discussed the blood in the urine, I also mentioned that Jenelle is sleeping all day, all night, and only really waking to eat. Dr. Phillips did not like that at all. He felt that she should not be sleepy from the ACTH, and told us to go to Emergency to run a blood test, urine test and possibly another spinal tap. He felt she might be sleepy because she might be fighting off an illness. After 5 attempts (and 3 hours later) they finally got enough blood to run the tests. The doctor at Emergency was great, and thought it best to run a Phenobarbitol panel as well to make sure her drowsiness wasn't caused by too much Pheonbarbitol. All of the tests came back normal, and her Phenobarbitol level was actually very low. They decided they didn't need to run a spinal tap and sent us home. Also, her blood pressure has continued to stay on the "normal" side, so hopefully we over that scare from last week.

Once we got home, I spoke to Dr. Phillips and he said he was still worried about her sleeping all the time, but that he was glad the tests were normal. We are not to let her sleep longer than 8 hours so she can get enough liquids. She is actually eating much more now that she has been on the ACTH. She has increased from 1 1/2 jars of food a day to 3 -4 jars, and from 3 bottles to 5 bottles a day. She gained 2 1/2 pounds since we left the hospital two weeks ago. We are going to continue the ACTH at the same dose until Wednesday, then talk again with Dr. Phillips about possiblly weaning her off. She is starting to get cranky and cries a lot when she is awake, so its nice that she sleeps most of the day. We understand his concern though. He was not inclined to increase her to the maximum dose of ACTH because he hasn't seen a cesation of seizures. He felt with her sleepiness, the side effects of the high dose would be just too risky.

We may decide to wean her off ACTH on Wednesday. If we decide to wean her off on Wednesday, she could be off the medication completely by her birthday the following Wednesday. We just wish she were seizure free, but at least we gave this medication a try.