Thursday, October 17, 2013

Week 1 of ACTH and a Giveaway

We're home and man is it nice!  Riley's meds arrived an hour earlier then scheduled Tuesday at 9:30am.  They were sent from Tennessee so I was a bit worried about them making it in time but, UPS came through!

Tuesday morning was a bit hectic as Logan had Grandparent's day at school so we had to put a plan in place to get all the Grandparent's to school and make sure someone was home to sign for the medication.  Thankfully, everything fell in to place and the timing worked.  Grandpa and Grandma Hopper were able to bring Dave down to the hospital to meet us and we were ready to go around noon.

Riley is still doing well.  I know she is so happy to be home.  Her agitation last night wasn't as severe as it was in the hospital and I am hoping that continues.  She's starting to get a bit puffy and swollen.  Hopefully, this will only last for the first 2 weeks that she is on the higher dose of ACTH.

I was hesitant to write this (fearing I'd jinx it) but, in the last 36 hours Riley has only had one small seizure.  ONE!  Yes, I am yelling.  She's only been on the ACTH for 1 week so this is fabulous progress!  It means the ACTH is working!!!!

I thought I'd explain a bit about ACTH and what it is doing.  It is amazing to me the things that are available now that weren't available just a few years ago.  I've pulled some info from the pharmaceutical company and  .

"According to the American Academy of Neurology (AAN) and the Child Neurology Society (CNS), the goals of therapy for infantile spasms (IS) are: [3]
Many studies show that when hypsarrhythmia (chaotic brain waves) lasts for long periods of time, brain development can be damaged. However, when babies with IS are treated early in the course of the illness, they may have a better outcome.[3]

Hormonal Therapy

ACTH (Acthar)

ACTH (Acthar) is a prescription medication that may work by helping the body produce natural hormones such as cortisol and by having a direct effect on the brain. It is in gel form and is given as an injection into the muscle. The gel is designed to slowly release the medication into the body after it is injected.
ACTH (Acthar) is a prescription medicine that is used to treat infantile spasms in infants and babies under 2 years of age.[8] (Acthar Medication Guide) In one clinical study, 87% of subjects who received ACTH had no spasms and no hypsarrhythmia within 2 weeks.[7] (Acthar Prescribing Information, 2010)
The recommended dosage of ACTH (Acthar) for treating IS is 150 units per meter squared, divided into two daily injections of 75 units per meter squared each. After two weeks of treatment, the dose may be gradually lowered over a two-week period and then stopped.[7] (Acthar Prescribing Information, 2010) If treatment is successful, the spasms and hypsarrhythmia (chaotic brain waves) should disappear.

And from the pharmaceutical company:

Acthar Is Not a Steroid

Acthar is not a steroid. It contains the hormone ACTH, which stands for adrenocorticotropin ("a-DRE-no-cor-ti-co-TRO-pin"). Acthar is a highly purified preparation of ACTH in gelatin.

How Acthar May Reduce Inflammation

Acthar works in 2 ways:
  • Directly with your immune system and central nervous system and with your body to help it produce its own natural steroid hormones (cortisol, corticosterone, and aldosterone)
    • These natural hormones may help reduce inflammation causing your relapse
  • Acthar is believed to affect T cells and B cells
    • This action is believed to impact the inflammatory processes

If this doesn't work which we are praying that it does there are other treatments available.  ACTH is the first drug to try though.  So now we sit back and watch this medicine do it's magic.  It's going to be a long 2 weeks until our next EEG!

I have two exciting things to share with you all today as well.

The first is that one of the first doctors that was a part of Riley's case from day one is going to be doing a case study on Riley's missed diagnosis and treatment etc.  Why is this exciting you might ask?  For us, as parents, the one thing we've hoped to eventually do is educate either families or doctors about Febrile Seizures, signs of bacterial meningitis and ways to diagnose it early.  Those 24 hours that we lost were so precious. And can't be given back to us.  When she asked if we would consent to her using Riley's case I couldn't say YES fast enough.  If just 1 family is saved from this heart ache, if just 1 child is diagnosed properly because of what this doctor is doing we will feel like we've made a difference.  And, because we are human, hearing that a doctor is seeing things the way we have from day one was vindicating.

So we're excited to see what becomes of this case study and we'll anxiously await the presentation in February to a conference of 500+ doctors!  We've been told we can attend the presentation.

I also want to invite you all to enter a little giveaway.  I've never done this but, after all of the support we've received and after such a successful CHOC Walk, we figured it was time to give back.

We'll be giving away.........

Your very own 2013 CHOC Walk Tshirt!  Riley is not included in this giveaway!!!

A 2013 CHOC Walk medallion and lanyard........

1 Disneyland Park Hopper ticket (to ship in December and valid through 11/2014)

A $25 Disney gift card!

So.... How do you enter????

2 ways.

Leave a comment here on the blog. 1 entry
Like our NEW Team Riley Facebook page 1 entry
Team Riley Roo

Of course I've waited forever to start this page and Team Riley is already taken!  So Team Riley Roo (Riley Roo being a nickname we have for our little Miss) it is!

I'll take entries until Sunday night at midnight PST.  We'll draw and announce the winner on Monday.

Thanks for continuing to pray for us, think of us and follow us on our journey.  And.... Good Luck!

P.S. Feel free to share the FB page.  The more the merrier!!!

Dave, Megan, Logan, Mason and Courageous Riley Roo!


  1. Riley not included??! No fair!! I suppose I'll still enter. LOL!
    Always praying for Miss R and all of you - so thrilled she's back home, and the news of the case study is amazing!! xoxo -kim

  2. Great update, and love the Facebook page. Hugs!!!

  3. I am trying to convince my Dave that we should do disneyland in october next year and walk with you guys!! It looks like so much fun!

  4. Enter me enter em :) luv reading ur posts

  5. You should do Disneyland the end of January, lots of Canadians and a WeMo GTG!

  6. I hope the new plan is working!

  7. I love reading about miss Riley. I had added her to our church's prayer chain back when she was first hospitalized, and I still have people asking how she's doing.

  8. So happy to hear Riley is having success with the new medications. I found your blog from Kellys Korner and have been praying for Riley since.

  9. And now I'm following along on Facebook too :) (oh, I'm Heather, mom to Josh, Emily, Erica (hence the profile name her and her and him))