Baby Steps

Thursday, February 9, 2012

Playing the waiting game

Not much has changed around the Koozer household. Piper is still having around 300 seizures a day. We were weaning her off of one medication but started to see an increase in seizures so now she is on a low dose of this medicine until we can get started on the vigabatrin. On the lower dose of topamax we have seen a small increase in muscle tone and strength. She is turning her head to the left side again (she stopped doing this when she started the med) and using her left side a little more. We still have a lot of work to do to get her neck strong enough to hold her head up. Her smile has not returned but we keep patiently waiting. Sometimes she smiles when she is having seizures so at least we know she still can but just doesn't want to.She does not recognize faces and we have accepted that she may never do so again but still pray it's just a side effect. I do think she recognizes Justin and my voice which makes us happy. She has been doing better during tummy time ,mostly because she is angry and lifts her head to scream at me. I guess whatever works is good. :)

**on a side note, i hate the drug topamax and would recommend trying other things first if you or someone you know is in this situation. It has crappy side effects and horrible withdrawal symptoms when you stop using it. It is sometimes prescribed for migraines so be careful.

The new drug is vigabatrin and is called the "wonder drug" in the Aicardi community. I don't really want to think of it that way because I really don't want to get my hopes up. It is a long process to be approved for the drug because it can cause permanent vision loss. Our recent visit to Emory for the ERG is the first step in the process. It takes 10 days for the test results and our doctor can process the request. It has been 6 days since the test. We may not start the new meds until March. Playing the waiting game is the hardest part right now. I want to fast forward to March but at the same time I want time to freeze so she can have a chance to catch up if that's even possible. Having patience is extremely hard, especially when you watch your baby struggle every day.

I decided to finally get on the Aicardi website and read stories of other girls ( I have put this off for a long time). It was something that needs to be done although it was not that encouraging. Most of the stories are very sad. Most of the girls are not able to walk, non verbal and have many health problems. There are a few that function well physically but have extreme cognitive difficulties. These girls are on the mild end of the spectrum and do not have as many seizures as Piper does.Every child is different so we don't know what the future holds, but we do know that unless we get her seizures under control her prognosis will not be so hopeful. Please pray with us that the new medicine will help her.

I joined the discussion forum to be able to have support from other families.
It will be good to talk to people who have gone through or are going through the same situation. They have a family conference in July in St. Louis that helps families learn and support each other. We are going to try and save up "vacation" money to go to the conference.This is the website if anyone is interested in reading more

http://www.aicardisyndrome.org/site/node/13

Thank you so much for our friends and family that read the blog and continue to stay updated and praying for us. It makes it so much easier when people already know what is going on so we don't have so many questions to answer. It helps us have a little more normalcy in our lives, which is so important to us.

4 comments:

  1. Annie, you have a beautiful girl. My prayers are with you all and of course sweet Piper. I pray that you are able to try the new medication and it works well for her.

    I was on topamax for a while for my migraines, and you are correct ... the side effects are pretty bad.

    If there is anything we can do for you, we'd love to. Have you thought of maybe donations for Miss Piper and all you will need for her? Such as monetary donations? I know that it can be expensive driving to & from the dr @ Emory. And the conference you'd like to attend. Maybe friends and family could donate to make this possible for you all. Just an idea ;)

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  2. Look at all that hair!!! haha....she is SO cute! Still looks just like her daddy :) Love you guys and pray for each of you often! Give Piper hugs and kisses from us! PS...you and Justin are AMAZING parents and you are doing it all in a manner that seems impossible to me. I am blown away by your strength and love and endurance for Piper, each other and God! May He continue to get the glory through this journey. Love you!!!!!

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  3. I think about Piper so often...and YOU as a mom. You are amazing that you are so strong and so devoted to Piper. She is a beautiful baby girl and is so lucky to have you both. I am praying for you all.

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  4. I just found your blog today and also have a daughter with AS. She is 15 months old and just weened from Vigabitrin. We didn't have to wait for her prescription. The day after our neurologist suggested this drug as treatment we received our first month prescription in the mail. If you have decided to move forward with Vigabitrin push your neurologist to get it on the way ASAP.

    Reach out to me if you have any questions. I live just north of Atlanta and we have been taking our daughter to Children's Healthcare of Atlanta. We also had her first ERG about 3 weeks after starting Vigabitrin.


    Hope this helps,
    Wade


    wadebaggarly@hotmail.com

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