Archives for the month of: June, 2006

We went to see Dr. Kabbani this morning and we were ready to take Grace off of the ACTH, we saw a little reduction but not much in the seizures. however we left with the plan of increasing her to double the amount we started giving her to go for one more week. Kabbani has had a patient in the past that did not react to the ACTH until they got to this high of a dosage, so it may just be a dosage thing. We are also going to increase her klonopin (other seizure medication she is on). I think this is an attempt to treat the seizures as nothing is really happening so far, but the good thing is that klonopin is a muscle relaxer so it will counteract the steroid. I can’t imagine Grace on only the steroid.


We went back to Dr. Kabbani after a week of being on ACTH. Unfortunately there was not a significant decrease in seizures so we will be increasing her dosage by 50% for the next week. We will know in two weeks of starting ACTH if this drug will work for Grace. We feel like it is our fault that Grace is not getting any better. Since we give her the drug and that is all we can do we feel like we are failing her. We have to increase her Prilosec to double the amount, the insurance company didn’t like it at first but it is preventive so she does not develop stomach ulcers which is yet another side effect of the ACTH. Grace’s blood pressure is high so we have to start her on a blood pressure medication as well.

No Hoover I don’t want my face licked!

Today we (Joy) actually gave Grace the injection of ACTH, you could hear the skin tear as the needle broke her skin. No parents should ever have to give their baby a shot. We are incredibly thankful that the home health nurse took her own time to come back to our home to assist us.

Now it is kind of a waiting game to see what happens with Grace’s seizures.

This morning the Iowa Methodist Home Heath came out to deliver Grace’s ACTH and all of the supplies we will need to give her the drug. ACTH has to be given by injection and we will have to give it to her. Dr. Kabani said this agency would come out for a week to give/assist with injections but we found out that they only come out once. The nurse that delivered the supplies and gave Grace her first injection apparently saw the fear in our eyes and volunteered to come back tomorrow before going to work to assist us with our first injection.

We went to our pediatrician today for Grace’s 4 month checkup, one would think with all of the recent visits to doctors this would have just been taken care of already. We will not be able to give grace her 4 month immunizations until after she is completely off of the ACTH which could take up to 6 months.