Wednesday, April 6, 2011

good bye ACTH

That is it! All done!
Emily had her last shot of ACTH yesterday (Tue)

24 hours without it has already made a difference. We have seen more smiles and more of her personality.

Emily started ACTH on Feb 4th and has been spasm free since day 8 of the shots. Almost 8 weeks with no seizure or spasms has been fantastic!!
She is sleeping 8-9 hours at night! Not always straight but when she does wake up usually a diaper change and repositioning does the trick. She takes melatonin and a little valium, we finally found the magic combination.

She is happier all around. The past month or so she began grunting when you did anything to her that she did not want to do, which was pretty much everything. The grunting went down a lot just in one day.

Her eating has not changed either. Many kids go on a food strike when coming off ACTH but Emily's appetite has not changed thankfully because she is only in the 5th percentile of her height and weight. We need to beef this girl up! She looks like a chunky girl but she really isn't.

I am just so thankful she is such a good eater. She is still eating 100% by mouth. Only meds and water in her g-tube. We try giving her water by mouth after each meal but she does not like it and tends to choke. We are working on it though.

We have so much to be thankful for. I know that in a heartbeat all of this can change. I am aware how vicious and mean epilepsy is. I am also aware how strong my little girl is and we are celebrating each day!!

We are praying this continues.


  1. Great news - will be praying she continues to do wonderfully!

  2. Just happened on to your blog because of the title, congrats on completing ACTH! I remember the lists of things that are terrible while they are on it and then, how every single parent who said "if it works, it's worth every single side-effect". I agree with all of my heart. So happy to hear she's seizure free. Prayers that she will snap back in no time and we can kiss those nasty seizures goodbye for good!

  3. Emmy is going to come out of this. She is SUCH a STRONG little girl! She has the most wonderful Christian parents and a very loving grandpa and the VERY BEST GRANDMA IN THE WORLD!! :-)
    Goooo EMMY!
    Grandma Johnson

  4. I am praying... PRAYING HARD!!!!!... that this is it! The key... the answer to many previously said prayers!!!

    Come on Emily!!!

    I know you have to be so happy to see that personality coming back.

  5. Congratulations! ACTH is a tough one...