Monday, August 15, 2011

Seizures and Saint Louis

Im pretty tired right now, so this is my one attempt at an update. I'll fill in what I have left out a little later.

Vada had a DTaP vaccine on August 4, 2011 and I swear that night she began having seizures, again. However, at the time I took her "behavior" as she was having a sore thigh from the injection and maybe showing some irritability as well. I also thought that she quite possibly could be constipated--she has serious issues with being able to poop on a regular basis and we haven't got the Mira-Lax dosing tweaked just right-- yet. I can't say for certain that the DTaP caused the seizures because she had two DTaP vaccines, this last one being her third and the first two caused no concerns. This time is just very coincidental, if you want to call it that. Anyway, a couple of nights passed, she pooped (a lot) and still she was waking up screaming and crying. She would throw herself back and make circular motions with her whole upper body, which, by the way, were kind of frightening to watch. It wasn't until Thursday night when her jack knife motions reappeared or at least when I allowed myself to see them for what they were. Seizures. The next morning I told Justin how she had woke every hour or so, each time having fits. Together we decided that we would work together and try to record what was happening.

On Sunday Justin and I decided that I would take Vada to the Emergency Department of the Saint Louis Children's Hospital. Going through the ED would result in almost immediate treatment verses a possible wait due to office scheduling. The Children's hospital was rated number five out of the top fifty in the U.S. and since we no longer have our Peoria Neurologist this is where our hearts were telling us to go. Plus, the hospital and Neurology staff came highly recommended by people who have gone down this road and who have, in way or the other, came out on the other side.

So that's it. I'm really tired and writing seems like such a task right now but I wanted to post a update for those who were curious. Thank you to everyone who have sent messages to me, who have prayed for Vada and our family and a special thank you to Amy Armstrong, who continues to help me through this, even from afar.

I should know more soon, as in today and when I find something out ill post a update. As far as the videos go I have posted one that is edited, "My Movie" and the ones that follow have not been, they are longer and there is a great deal of time between the questionable seizures where nothing other than rocking, bouncing and or sleeping occurs. If your interested, I would say that the first two show the best of our concerns.

Feel free to ask any questions. I'll answer what I can and find out what I don't know.


Annie @ The House That Jade Built said...

I'm glad you took her to St. Louis. You have to follow your heart and they are wonderful there! I am coming tomorrow for an appt. @10. I will message you my cell. I'd love to see you both but I'll let you look me up if you are up to it. I definitely don't want to intrude! Lots of prayers for you!!

April Vernon said...

Thank you so much for sharing such personal videos. Maybe they will help another parent to recognize something serious that they wouldn't have understood otherwise. I wouldn't have known those were seizures. It is so good that you went with your instincts and got her where she needed to be. Is this the first time she's had them? How old is she? My heart broke watching the videos, and I am praying all is taken care of soon. Please keep us updated.

Twilson9608 said...

Annie- I look forward to seeing/meeting you, your mom and Miss Ollie. In fact, I cant wait!

April- Vada's seizures dont look like much but they pack a punch and can cause some serious brain damage if left untreated/un-diagnosed. Vada was diagnosed with West Syndrome/Infantile Spasms/Epilepsy when she was five and a half months old. If you look under the Blog header you will see a tab specifically for her seizures, although I haven't looked at it recently or even updated it, so I don't know what it has under it. She is now seventeen and a half months old and tomorrow Aug. 16, 2011 is the one year mark for her first noticed seizure.

Brian Stipp said...

Those videos wrenched my heart...we're praying for you, sweet Vada.


ch said...

St. Louis was amazing to us when our local children's hospital dismissed the seizures LC was having almost 2 years ago. Thankfully, LC's were transient and didn't require medication, but the neurological team at St. Louis was simply astounding and so quick and thorough in their assessment and treatment. I'm so glad you found your way there. Praying for all of you.