Well, I cannot believe we have been doing the seizure meds for more than two weeks already. I have been communicating with our Dr. via email to let him know how many seizures she's having each day. I'm writing them down and tracking how long they go for. It is still usually about 10 minutes, but sometimes they are more or less intense. I may not be catching every one of them but it does seem like there are a couple less each day. (She was having up to 11 a day and now it is more like 7 or 8.) I asked the Doc if that was the medicine and he said it is hard to say what is medicine and what is the seizure changing on its own.
The plan continues to be to keep up with the B6 and increase the Zonegran each week until we are at 150mg a day, so 4 more weeks - if at that point she is still having seizures then we will look at the ACTH therapy. It would be really great for Marleigh for this medicine to work, so send positive thoughts.
Some other things of note. She is actually doing good physically and has not technically fallen behind on any developmental milestones. I'll be keeping a close eye on that to make sure there isn't something I can do to help her. She is sleeping a little more so that is really nice!
Our family & friends have been super supportive, sending well wishes and helping us out in ways we never dreamed of! Thank you very much to everyone for your prayers, phone calls and happy thoughts. It has been really nice reconnecting with everyone.
Hugs,
Erin
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Sending all the positive thoughts we can muster, keep up the good work, hope to hear any good news as it comes, and thanks for keeping this blog updated. I check it every day.
with love!
Casey
Hi Erin,
This is cousin Shannon.
Kristen sent me the link to your blog. Your family is beautiful!
Marleigh is an angel! And she has many prayers from her family on the east coast! You and Keith are doing a wonderful job. Stay strong and give those beautiful children big hugs from all of us. I will be checking back to see how the medication is helping.
When Torry was very ill about 8 years ago I learned first hand that there is nothing stronger than a mother's love and fight for your child. Follow your gut. Listen to your heart, it will always tell you just what she needs.
We love you all!
Shannon
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