One week seizure free!

Look what’s back?! His beautiful smile! 20130424-000131.jpg
Eli has been seizure free for one whole week! He’s still not the Mr. Happy Boy he usually is, but I’ll take a few smiles and the occasional giggle over irritability and crankiness any day! It’s really interesting…He’s still on the high dose of ACTH yet he’s a totally different baby now that he’s no longer having the seizures. Leads me to believe it was the seizures causing his unpleasant behavior and not the steroids – or maybe now that the steroids are actually working the negative symptoms subside some? He does still have a very “swollen” face (known as moon face) but I think his chubby cheeks are adorable! 20130424-000821.jpg
I am so thankful that the ACTH finally started to work, just when I was ready to give up. I have read so many heartbreaking stories where the search for the right medicine(s) is exhausting and never-ending. I thought that was the road we were heading down. I truly was starting to lose hope.

Eli still has to get through the weaning process so all of your continued prayers are appreciated. He’ll have another EEG at the end of this week or early next week. If the test shows normal activity has returned to the brain, we will start the wean off the ACTH. That should take about 3 weeks. I am not sure of the maintenance plan after that. Usually, children stay on an anti-seizure drug (there is a wide range of treatment protocols as to the length of time – depends on the neurologist I guess!).

Thank you to all who have kept the faith. Your love and support is invaluable. ❀20130424-002834.jpg

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10 comments on “One week seizure free!

  1. Awesome update! Eli is such a champ and so are you, Chuck and Cody! Keep up the persistence – this Journey is on the rise! Can’t wait to spend some time together and kiss those beautiful kissable cheeks of yours Eli! xoxo

  2. Oh happy day! What a sweet boy! Melanie & Chuck, you are sooo blessed! I know this journey is just beginning and you’ve had to face so much is such a small amount of time but you come through with such resilience, strength and faith! So inspiring! Love & hugs to all!

  3. Hello Harringtons! I am inspired by your faith and hope for the future. And of course, I’m always happy to hear good news and pass it on to the VCA church family.

  4. I wondered if Eli ever did go on a maintenance drug? Brady has been on Topamax for about 10 days now and it’s awful. He will hardly eat or drink anything- maybe 12-15 ounces of formula in 24 hours. He’s back in a more non-responsive, sleepy, not smiley funk. He’s almost starting to feel kind of floppy because I think he’s getting dehydrated. I’d love to go drug-free if we could. Give him a chance to be himself for a while. It’s seems like not all kids do a maintenance drug. Just wondering.

    • Hi Katie,

      I’m sorry to hear Brady has become a little weaker lately. That’s no fun for any of you!

      Eli did not go on a maintenance drug. The ACTH did the trick on it’s own thankfully. I do know many kids go on a maintenance drug but that’s usually after Vigabatrin or Sabril. That was the appeal of the ACTH for us as we were told there is usually no need for maintenance meds after the seizures stop.

      I would definitely talk to your neurologist about getting him off the Topamax. Hopefully the ACTH did the trick to get rid of the seizures forever.

      Praying you get to see Brady’s personality come back soon and that playing with his big sister is in his near future!

      • Thanks for answering so fast. You have made me feel a little better. I will talk to the neurologist for sure and request they consider if no maintenance med may be approproate His EEG is perfect now. It’s rough- he’s only eaten 8 ounces of formula today and just bites of food. It’s good that ACTH helped him build up a very pudgy reserve!!

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