So I continue to read post on this site, as there are a lot of them. Anyway, I was up late last night reading post, when I came upon the ones about seizures. I know that there is a great possibility that Livi would develop them. I wasn’t given complete understanding of what to look for. I figured I had a couple of months. But I also wanted to be able to share with the babysitter what to look for. Well as I was reading one comment on a post I saw that Arin’s mommy mentioned watching infant spasms on YouTube. So after reading the post I went to YouTube and looked up infant spasms. The first video I watched was liking watching Olivia. I had mention to my mom that once or twice when I had placed Livi on the changing table that she stared off at the back of the hutch, got scared, stretched out her arms and legs and cried. I thought she was just scared by something. Watching that video the little body did the same thing. I watch a few more videos and found one of a little girl that rolls her eyes in her head the way Livi does. So I’m like, is she having seizures. I can’t a get a neurology appointment at CHOP vecause of scheduling and I don’t want to wait. I call the pediatrician, but don’t get much help there as she would hav eto refer me and they have a wait also. So I take her to the emergency room at CHOP. They are going to see my daughter no matter what. So we tell them I think she has had seizures and that she had one today, where she stopped breathing. Okay so I fabricated the true, I don’t think she had a seizure or episode today and she definitely didn’t stop breathing, this time. But we are admitted in CHOP. She has been prodded at all day. The took a urine sample and it came back positive for a uti, so that had to put a catheter in to get a sterile sample. Havent heard back about that yet. Her blood test came back good. She is now sleeping with her head hooked up to all these wires. I’m hoping for some answers in the next twenty four hours.
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I know how frustrating it can be trying to get answers and help for your baby. Seizures are always scary and I am behind you 100%. I think it is great that you are getting a head start on this. My little Taylor has seizures and she does stop breathing when she has one. It never gets easy or less scary. I pray that you get the answers you need to help your baby. Sounds like Olivia has a great mom and a mom that will stop at nothing to get her the help she needs.
Hey! I wish you had said something about the episodes last night when we talked. Don’t forget that Livi is not even 3 months old yet…she could still be showing her startle reflex. Still, now that you are at CHOP, I assume that they are doing an EEG, right? Hopefully, it will put your mind at ease as to whether or not she is seizing. Kaylee started having seizures around 5 months of age; they can be scary, and I totally understand your concerns. It will all be okay…I promise! xo
First… don’t apologize for a little “white” lie. We’ve all said them before. A few things to consider. Laurie is right. Alexander does have seizures. But he was also having these spazams while he was sleeping… and they looked like seizures. After our EEG – we learned the sleeping ones were just startle reflexes. The EEG is going to be the thing that tells it. What is happening in the brain during that period of time. If you don’t have one in 24 hours… they can keep you longer. You could just be insistent… to stay for 48 hours. My old neuro has kept some people for up to 3 or 4 or 5 days to get seizure activity.
Also… seizures do tend to look differently in a lot of people. Alexander stares into space while he twitches and you can’t get him to focus – no matter what. I remember being really scared about what it would look like – and then when we finally had one – I just “knew.” Also – infections / teething / etc. can trigger seizure activity.
Seizures are some of the scariest things about the disorder… but it will be ok. Trust your Mommy Gut. Kristen
Update…they are not seizures,just normal baby movements. How are you suppose to know the difference? I will always err on the side of caution when it comes to my daughter, but we could have avoided all the poking and prodding that was involved.
My baby sister Roxy who was diagnosed recently, mind you she’s 24 had he first seizure at 6 months, it was a gran mal seizure, last about 30 minutes, I was 9. I can tell you that it’s traumatizing at first especially when it’s violent, but there are so many variations of seizures. Telling a small lie to get them into neuro is not horrible I would not feel bad. It gets you answers. Do what you have to do to get your child, or family member better. I work in the medical field and to this day if someone comes in seizing I feel so helpless.
Again, I admire your honesty, even about your dishonesty. I understand the fear and anxiety you were experiencing. Who wouldn’t panic about seizures after reading about the types associated with WHS? No one wants their infant to experience them. It is unfortunate that the health care system, with all it’s complexity and advanced technology cannot respond to a mother’s fear in a simple and timely way. The poking, prodding, and hospital admission could have been avoided with an out patient EEG, and compassionate consultation. Since the easy option and support you needed wasn’t available, you did what you had to do. No one can fault you for that. Congratulations on being a resourceful mother and doing what you thought was best for your child.