Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Thursday, February 17, 2011

At least we know..

After talking with Dr. Percy and our local neurologist, we decided to start weaning Abby off Keppra, her seizure medicine.  When she first started having seizures last January, she was fighting off a bronchial infection and a stomach virus.  She was put on Keppra right away, and after a couple of weeks of changing the dosage, her seizures stopped.  She has only had one episode in the past 12 months. We wanted to know if the seizures were only due to the illness.  If that was the case, she could go off a daily medication, and only take something when her immune system is compromised. It was a long shot, I realize.

We lowered the dose on Friday.  We were hopeful that she would at least be able to take a lower dose, but that's just not the case.  She started doing some crazy neurological things yesterday afternoon.  I figured it could be a coincidence.  She does have Rett, and there is a little crazy just about every day.  Today, however, she had a seizure at school and then another two this evening.  We went ahead and increased her to her previous dose tonight. It may take a few days for the increased dose to get into her system, so we'll see what happens tomorrow.

I feel bad that we lowered her dose now that I see that she needs it, but at least now we know.  We have never confirmed her seizures on an EEG, so I always wondered if maybe the were just a "rett thing".  Regardless of what they are, her seizure medicine makes them stop (which I guess confirms that they are seizures), so she will keep taking it at the dose that she was on before. Of course, the seizures now are completely different than the ones she had last year.  She's mixing it up a little bit this time.  Blue lips, vomiting, no convulsing, blank staring, and then sleeping. Please pray they stop quickly and the Keppra will keep them under control.

On a lighter note, Abby was super excited for her Valentine party on Monday. She was all decked out in her cupcake tights and sequined hat.   


  1. Praying for sweet Abby! I LOVE her hat! Cute little Valentine!

  2. She looks adorable. I hope that you work things out. Thanks for sharing. My Evalyn was just doing some of these things herself today. This past week too. We just had a sleep study, and I guess I need to get some of this taken care of. That means the neurologist. I thought it was the flu too, but the blue lips I thought was the apnea. But. Reading your post makes me think it's time to get the EEG done separately.

    Enough about us. I hope you guys get things settled soon. <3.

  3. She is such a doll! I will be thinking about you guys and hoping the medicine kicks in FAST! Please don't feel too much guilt about taking her off the meds, you had to try so that you could take her off them if it wasn't necessary...you are a great Mom!

  4. I agree with Dawn, don't feel bad about it - you had to know whether she really needed the medication.

    She is so pretty, in her cupcake tights and sequined hat! She looks so happy! :)

  5. oh man ann marie. but you are right, now you know. and knowing is kind of half the battle sometimes. I know you dont want her to be having seizures, but you know what helps. so there is that. big hugs!

  6. oh, ann marie. i'm so sorry. she is just too cute. xoxo.

  7. Is it okay if I link to this post? Please let me know at journey.beyond.survival (at) gmail.com if you don't want me to. I'd like to protect your privacy if you want to. I followed up. We ended up in the ER getting tests done to rule things out. (She's fine, just a bit tortured from the tests)

    Thanks so much for posting this. It was a huge help. I know that it's so hard, but you are helping me and so many others too. My prayers and thoughts are with you.

  8. I'm sorry it didn't work out. But I think knowing she needs the meds helps when you give them to her.

    she is adorable!