Monday, February 21, 2011

another ACTH update

Emily is on day 17 of ACTH injections.

This time around is much different.

The first time she was on ACTH Emily swelled quite a bit pretty quickly and had no increase in her blood pressure or blood sugar.

This time she has not had much swelling and her blood pressure is higher.We have had to decrease her dosage once because of her blood pressure. She is also SO fussy. She can scream for hours on end. We have found a few things that help-a warm bath and eating. We do lots of baths and eating around here!

Here are a couple hospital pics.

Her first non-keto meal, mashed potatoes!! Her favorite now.

Totally wore out! (notice we go no where without her weighted cat and her puppy violet)

She has definitely regressed in all areas. She does not make eye contact and is not looking at things or the tv any longer. Smiles are very few and far between. She is just overall grumpy. We are praying that all of this will come back pretty quick!

A rare grin! Food on her face because eating makes her happy!

It has been a huge change coming off the ketogenic diet. She was on it for 11 months. The first time I gave her liquid Tylenol I freaked out. She has not had liquid medicine for such a long time.
I am so very thankful that we tried the ketogenic diet and if needed (I pray she does not) we will go back on it.

Just to make things a tad bit more complicated, Emily has had a bad uti again (on antibiotics) and it teething.

So I guess I should get to what everyone is wondering.

Is it working?!?!?!?!

Well today has been the 8th day with no spasms!!!
Days 1-5 she continued to have clusters of spasms and then a couple days with none and then 2 days with just a few single spasms and none since.

As far a seizures go we are not seeing an actual seizure the past few days. There have been a couple of "movements" we are questioning but nothing noteworthy.

We keep a daily journal on Emily. It has been a lifesaver! It has every medicine she has ever taken in the front and daily we write down her meds, food, vitals, diapers, and seizures/spasms (or lack thereof!)
Joe suggested we do this in the hospital when Emily was first diagnosed and we have not missed one day since. We can go back and see trends of what meds worked better than other and when she had appts an tests. It has made our life so much easier.

Keep praying friends! I can not begin to tell you how amazing it feels to watch your daughter fall asleep and not have a seizure or wake up and not have a spasm. I watched a video the other night of Emily having a spasm and it hurt to watch.

I have had so many sweet comments and messages and I am so thankful for every one of you! Emily is lucky to have so many people praying for her.


  1. I'm even more excited to think that the change in the diet has not caused more seizures/spasms... so that is an even better sign that the steroids are doing an amazing job! Still praying with you...

  2. I would also like to say THANK YOU along with Erica. We have literally felt the prayers of our friends at times and to be honest, it's really gotten us through some rough times on our journey. We pray that these last few weeks Emily is on ACTH will be the last time we have to deal with this stuff again!!

  3. I'm sorry that Emily is irritable and not making much eye contact. I am THRILLED however to read about the lack of spasms and seizures! I pray that this is the beginning of the rest of your/her seizure-free life!!

  4. this is wonderful news!!!

    Sorry it has to come at such a "high cost"....(no pun intended!)
    the fussiness and loss of eye contact...hopefully it is an adjustment period, and then you'll see her old tricks! many prayers are being sent your way!