Monday, February 21, 2011


ACTH seems to be the medicine we will be asking for at our Epileptologist appointment next week. My time has been spent into the early morning hours researching medical journals, IS studies, blogs, and message boards, I feel like I have learned so much about neurology and Infantile Spasms in these few "short" (hah!) days.

Typically they admit children into the hospital to begin treatment on ACTH, and train parents on how to give the injections (yes, shots...). After seeing the cost per vile of this medicine, which we found our insurance doesn't cover, I finally had to get on a message board and ask how families pay for them. Someone responded immediately and told us about
NORD, the National Organization of Rare Diseases, who picks up the cost of medicine for diseases like IS. I spoke with them today to confirm, and they said that they do pick up most/ all of the cost and deal with insurance issues. You will never even believe how much each vile is...

$29,000. Per. Vile.

Insane, huh??

And people still think nothing is wrong with our healthcare, especially when our insurance conveniently doesn't cover it. But that is a whole other soapbox...

There appears to be no guarantee, but ACTH has the highest success rate out of all medications. But with the chance for improvement/success, comes many side effects:

  • Cushingoid - Most children will gain weight and retain extra fluid during the time they receive ACTH. This weight may be seen with facial puffiness. The appetite increases and the children crave more food.
  • Irritability with increased crying
  • Decreased sleeping
  • High blood pressure, heart failure
  • Calcifications of kidney and pancreas
  • Increased risk of infections
  • Increased blood glucose
  • Loss of milestones, including smiling, motor skills

Children receiving ACTH should have blood pressure, weight and serum electrolytes monitored frequently during the time they are receiving the ACTH.

From what I have read the most common is the weight gain and Cushingoid features, that are so visually startling. I have "borrowed" these photos from a couple of blogs, I hope the bloggers don't mind:

This is an adorable 20 month old girl, before starting treatment:

Here she is only 5.5 weeks in, after gaining 10 lbs., putting her at 32.5 lbs.:

Little guy, before treatment:

45 days into ATCH:

Luckily, they seem to lose the weight almost as quickly as it is gained. Here he is 2 weeks after:

And then, 5 months later:

Are we scared?

Terrified. But all these side effects don't compare to the alternative. So, we are praying this is the medicine offered and the medicine that changes Deacon's life.


Jess said...

You are being so strong! I am just amazed! I truely believe that you guys positive attitude and your proactive approach is what is going to bring Deacon through this!! Way to go!

blogzilly said...

I hope that ACTH works for Deacon. The weight gain is pretty brutal, that's why you have to make sure to keep tabs on his BP frequently and such.

But they can lose the weight very rapidly too, which is a good thing, when they go off of it. Bennett (my son) was not on it long, as it did not work for him. (Nothing would have, no medication would have, as we were dealing with a tumor we did not know about yet).

So while I don't have the greatest 'before/after' pics you found, I definitely have a couple of months of photos where I can see he was on it.

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