I got a little discouraged this week. This April would have made Taylor 2 years free of seizures. Taylor had a seizure on Tuesday evening of this week and I swear every time is like the first time all over again. She was sitting looking out the back door watching her two brothers play in the yard while I was washing dishes. I could see her from where I was and then I saw her lay down. I thought she was just sleepy. I walked to my bedroom and back and then I saw her face down on the floor. I could not get a response from Taylor but her eyes were wide open, just starring. Then she quit breathing and was blue all over. I breathed in her mouth and nose several times and then went to get the “diastat”. Once I gave her the meds her color started to come back but not completely. She was still unresponsive. I was panicking! My brave 12 year old son called 911. The seizure lasted for about 20 minutes before she ever showed a response. I was so worried! Her heart rate and blood pressure stayed high for over an hour. God was right there with her and our family. Once she came to she was back to the same happy little girl as always. The Dr. decided to keep us overnight just for observation. She is doing great! It just goes to show that you never know what to expect and I should have never got too comfortable with thinking our seizure days were over. I’m just so thankful to God, my son for knowing what to do, 911, the emergency staff, and so thankful to my family for being there for us so quickly. It is just going to take me some time to relax and not be so up tight where she is concerned. I have been scared to let her out of my sight. I did not even send her to school this week at all. It seems like I am up every 30 minutes of the night checking to make sure she is breathing. I hear some people talk about never calling 911 during or after a seizure and I just can’t understand !! Will it ever get easy, less scary, or does everyone feel about the same as I do? I don’t think I will ever get to a calm point when it comes to seizures and seeing my baby in that situation.
Oh man… I can’t even imagine going through what you went through. How scary. Thank you for posting this, keeping all of us on our toes. Kendall started having miles seizures a few months back, but nothing like this. Glad to hear that Taylor is doing better.
How scary! I’m so glad to hear Taylor is feeling better. You are very strong!!
This must have been a truly terrifying ordeal for you and your son, who from the sound of it did an amazing job in staying calm and dialling 911. Our baby girl is only four weeks old and even the thought of her having a seizure makes my blood run cold. Glad to hear Taylor made a quick recovery and is doing well, I hope the worst is now behind her.
You are so right with this post. Seizures never get easy. Thank you for posting to remind this because Mia has been seizure free for a year and we also have become lax. I am going to review with my boys about 911 and make sure the Diastat is always close. We also use tranzene when Mia gets sick to prevent febrile seizures and since we started she has not had any seizures. I think this has made a difference in her life! Thanks again for the post.
My Aubri had been siezure free for over a year until recently. She has started to have siezure activity in the form of brief shakiness that doesn’t require a diastat to subside. Each time this happens I fear the worst. However a horrible tragedy has made me very thankful that we have been able to control her siezures so well. My friend’s 2 yr old passed away this week due to complications from a siezure. She did not have WHS but it made me realize how lucky we are to have Aubri in our lives and not to ever take our children for granted.I too have been in that very heartbreaking situation as Aubri had a grande mal siezure June 23rd 2009. It lasted 3 1/2 hours. The medical staff in our area was ill equiped to deal with the situation and I thought I was watching my baby die. We were transferred to a larger city and connected with a great pediatric nuerologist. He is very informative and realistic about her situation but also very compassionate. He always reminds me that it is very hard to control siezures in children with WHS so every day siezure free is a victory for her and until recently I took that comment too lightly.I am so glad Taylor is doing so well.Every day should be a celebration with our very special children.
I can totally relate to you. My daughter had seizures thaat were very hard to control.
She is on 2 seizure med and at times was on even more. She got a VNS 2 years ago. It took a few months but she finally stabilized. We went 11 months without being in the hospital but the end of Jan she had to be hospitalized. Her seizures caused breathing difficuly too so she was in picu for 6 days then on the floor for another 9 days. I thought I had gotten past the fear part but this episode really scared me. She ended up back in the hospital (picu) for another week the end of Feb. The scarey part is how quickly she got sick. I had thought she was starting to out grow her seizures, had even discussed with her neurologist, starting to cut back her meds. I too am scared to let her out of my sight but she has been back in school for 2 weeks and enjoys it so much. Sometimes it is hard not to be over protective but she can go downhill so fast. It had been such a long time since she had had a seizure that I had relaxed a little but when it happened it was just as scarey as the first time. Good luck with Taylor. Feel free to email me if you wish at Fosma@aol.com. I’ve had a lot of experience with seizure.
WOW! You sure have had a lot of experience with seizures. I am so happy that she is doing great now. Thanks for the email and thanks for letting me know that I can contact you. It feels so nice to talk to people and families that share what we have. Taylor is getting ready to have some oral surgery done at the end of this month and I’m scared of her having a seizure and basically I’m just scared of the whole thing.
Aldrick 24, started having seizures at 6 mos. and he was having up to 24 a day. There was a time he’d be in hosp. every 2 weeks due to terrible seizures they couldn’t control..and everytime he would regress back to do everything he had just learned, balance his head and holding his bottle,etc. His seizures have gone down from 24 to 2 or 3 maybe once a week, and the longest he’s been without one is 1 month. He has been on every medication there is and now takes Lamectal and of course we also have the diastat suppositories..he also has a tendency to have long lasting seizures, I work in the medical field so I can deal with his seizures more calmly than my husband can, he really has a hard time staying calm.