We Are On Day Two - ACTH mode

Well we survived the starting of ACTH. After many tests, questions and a tutorial of preparing the dose, meaning filling the syringe with the Acthar Gel. We were actually taught and practiced with saline solution. Kathy (the head neurology nurse) did the training, and we discussed that Lonnie would be the one to actual give the shots. So she had him do everything like it was the real thing and got the needle all ready and then she takes her lab coat off and says ok, lets do it. I immediately broke into a sweat! She was going to have Lonnie practice on her! She said well you don't think I'm going to let you do your first shot on Daniel! UGH. So Lonnie actually did it and did it well, she said it was fine. We'll have to check with her today and see if there is a bruise!:). So we survived that, I couldn't' even watch. She left extras for us to practice drawing up the medicine into the syringe making sure there were no bubbles. After she left, I actually did one and after a couple attempts I was able to give Lonnie a shot in his arm....I thought I was going to puke after that. I am such a wimp.

Daniel did cry when he got his first injection, but hopefully he'll get use to it and soon it won't be so bad. Lonnie did a really good job, but I suspect he was probably a bit nervous, not about the shot part, but afraid that he would hurt Daniel. There is definitely a difference also in how quickly you can push the meds into the leg. The Acthar is a gel so it takes longer because we are using a 25 gage needle on his leg which is fairly small, and pushing a gel through that little hole.

Kathy suggests that we don't give him his shots in any part of the house that he associated with being a happy place. So I start to think ok, we'll do it in the bathroom.....nope cause then when we go to potty train him he'll have a fear of the bathroom. Laundry Room.....oh great we're going to scar him forever and he'll use this as his excuse to never have to do laundry!!

He didn't seem to have any negative reaction to the shot, but again we are only day two and still haven't given the 2nd shot yet. We will eventually be giving it to him in the morning, they say this is the best time. SO, starting today, these are the following things we have to watch for because there are possibilities of having these issues.

• Elevated Blood Pressure- Must be checked twice per week.
• Glucose in urine - Must be checked daily
• Blood in the stool - Must be checked daily
• Enlarged heart (cardiomyopathy)- watch for fast breathing, difficulty breathing, or chest congestion.
• Signs of Infection - Fever over 100 degrees, signs of a cold
• Worsening or change in seizures, new type of seizures, change in level of alertness or responsiveness.

The following are expected side effects of ACTH therapy. They will get better as the therapy is discontinued.

• Increase appetite
• Weight gain - moon face
• Irritability
• Acne

Along with the ACTH shots that he will get daily he will also now start taking Zantec 2 times a day to help protect the stomach against gastrointestinal bleeding.

Daily at home we have to make sure Daniel has a low salt diet, keep a log of seizures, keep results of ALL test, weights, and blood pressures. We must check stool daily with a test called EZ Detect, check urine for glucose with test strips.

Weekly he must go the the doctor to get a blood pressure check, weight, and Labs (CBC, electrolytes and glucose)

IN 3 weeks we have another EEG, and in 4 weeks we have an Echocardiogram. We had all of this done prior to the start of ACTH for a baseline...these are to check to make sure that nothing has changed or gotten damaged.

That's where we are so far in our ACTH journey. By the way, ACTH is a natural formulation of the hormone corticotropin. This injection stimulates release of natural steroids produced by the body.

I'm sure no one at this point is running out and saying...."WOW, I want my kid on that medicine!" Its some scary crap, but hopefully it'll do what its meant to do. Only 41 more days to go.