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April 23, 2009 at 3:31 pm #62239
Anonymous
InactiveHi Ladies,
Since this is totally not reflux related I didn’t want to put it under the boohoo section, so I am putting it here!
Well Cooper had his first Ambulance ride and his first trip to the ED today! I took him to preschool this morning at 9am – he was FINE! Just didn’t want to eat all of his breakfast, nothing else appeared to be wrong. At 10:55am his teacher called me to say he wasn’t acting right and was being really fussy and clingy, which is SO NOT him. I told her I was almost done at work and I would be by to get him shortly. Home is on the way to school from work (it is all 3 miles apart thank goodness) so I swang by the house grab his paci and blanket b/c I figured he would want them. When I got to school they had made him a “bed” in the floor which was so cute and he was lying in the floor with several of his classmates keeping watch on him! They told me they took his temp and it was 100.7… so I called his ped and was set to go in at 2pm. Got him home about 11:20 and took his temp again and it was 100.9, so I gave him some tylenol and was rocking him to put him down for a nap and all of a sudden…. HE started SEIZING! It was so scary, I ran downstairs with him in my arms and opened the front door to yell at dh who Thank GOD was home and he took Cooper who by this time had vomited all over me and himself and I called 911… the ambulance came and his temp was up to 101.4 we were in the ED by 12noon (again only about 3 miles from the house) and his temp was up to 102.8…. I have never been so scared before in my life…. They say it is pretty common, but I am just curious as to if any other of you have gone through this. We are home now with strict instructions to give him tylenol/motrin alternating every 4hrs with a follow up with our ped on Monday! I am so very thankful that his preschool teachers called me and that I got there when I did, we hadn’t been home 10 min before this all happened. Thanks for listening to my rambling…. I’ll keep you all posted. Lori if you read this… did Sarah have a febrile seizure before she had her spell that gave her the epilepsy diagnosis?
Thanks ladies.
April 23, 2009 at 10:09 pm #62245InactiveOh no, Beth! I am sooo sorry to hear about this! I just got on and started catching up on things (My FIL passed away last week and the funeral was today)
It could very well be a febrile seizure. I’ve read they are very common and accompanied by fever. I’m so sorry you had to experience that, but thankful he was with YOU and he is OK!!!Big hugs to you!! Did they recommend any type of follow up with a neuro or anyhing, or did ER seem to think it was harmless?I wish I could give you a “been there done that, it’s fine” but I don’t have any personal experiences with febrile seizures although my Godson has seizures (he’s 10 months old) but they are not febrile, it is totally unrelated– he has a suspected metabolic or mitochondrial disorder. Genetics is still trying to figure out what is going on with him.praying for you guys!!! keep us posted!April 24, 2009 at 7:32 am #62250InactiveHow scary!!! You reacted great! I don’t have any experience here either so hopefully someone will chime in. I have also heard that these are common, but common or not I am sure it is a horrifyingly scary event! Hang in there!!! I am thinking of you all
Ann Marie
April 24, 2009 at 7:37 am #62251InactiveHi Beth,
I’m so sorry that you had to experience this with Cooper. I’m pretty much a veteran and I still get upset nonetheless. The first time is the scariest, hard to get out of your mind.Try not to worry that Cooper has epilepsy. Febrile seizures are common, especially on the first day of the febrile illness when the fever is on the rise. It is also common with illnesses like roseola, where kids who won’t otherwise have them, get one. The fact that he is over 2 already is a good thing, it means that there’s a lower chance of it recurring. Has he had other fever illnesses in the past where he did not have a seizure? That’s also good. Most kids who have one febrile seizure will never have another. That’s why they don’t do anything. Few kids will have more than 2, and most outgrow them by age 3-4, with the high end range being age 5-6. Most kids who have even recurrent febrile seizures will NOT go on to develop epilepsy- the total percentage chance in a family with no history of epilepsy is less than half a percent. So like I said, don’t let our story scare you.About Sarah- she had her first seizure at 11 months old. It was a febrile seizure. We woke to her crying with a temp of 102, her first fever. I picked her up and then she had a seizure in my arms. We didn’t know about this, and thought that she was choking on something and dying. My dh gave her heimlich and AR while I called 911. They told us febrile seizure at the hospital. She was fine until 16 months old. Then she had 3 each two weeks apart with fevers. Since then she has had them with fever with some big breaks in between of up to almost 2 years with nothing. Fast forward to May of last year- she had the flu, a week long of high fever and had a seizure with a fever above 104 degrees. A week later she had her first non-febrile seizure. Even then she was not said to have epilepsy. In November we gave her the flu shot so she wouldn’t get that flu again, and the next day she had another non-febrile seizure. That’s when she got the epilepsy diagnosis. You have to have 2 NON febrile seizures to get that diagnosis. You can have tons of febrile seizures (I believe we’ve had 11) and still won’t be said to have epilepsy, so stay hopeful.Cooper has lots of good things on his side to suggest simple febrile seizure without recurrence- increased age at first seizure being one. Was the seizure generalized- on both sides of the body and symmetrical? That’s also a good sign. How high was the fever when the seizure occured? Higher typically is better, but it’s often the rise that causes it, not the temp itself. I would make notes of all these things including how long it lasted and all the details. I wish that I had done that earlier on. It’s good to have the info for later.As I said, I’m so sorry that you had to go through that. It’s something no one can understand unless they’ve been through it. For what it’s worth, Sarah has had a lot of febrile seizures and she’s a very very smart girl. She’s 5 and reads at a grade 3 level. I’m just telling you b/c I know that I was worried that it might have an impact on her intelligence.HUGS. PM me anytime if you want to talk.April 24, 2009 at 8:49 am #62252InactiveThanks Ladies and esp you Lori.
I am still slightly freaked out. His fever is finally down to 98 this morning, but I was checking it all night long!
Lori to answer some of your questions: It was a full body seizure, eyes rolled back, mouth foaming, and vomit! Sadly the fever was not high when it happened. I had just checked with an ear thermometer and it was only 100.9 in the ambulance about 15 min later it was 101.4 (via forehead) and at the hospital 30 min after the seizure it was 102.8 (rectal), so not high enough really to cause any alarm. I would say the event last 1 min but it may have been longer as it was long enough for me to freak out for a moment and then run down stairs, yell at dh and then call 911 while he was still seizing. And the other risk factor that Cooper has it this all took place within about 1hr of the fever starting and dh had a febrile seizure when he was this age, his temp was 105.4! So sadly I think this will happen again. this is only the 2nd time in his life he has had a temp over 100… so I think we are probably going to have to watch him really closely. We are going to our ped on Monday for a follow up and I am doing a temp log with what he is/was doing when I took it and when I gave him meds and how much. I hope we can prevent this from happening again so I will keep everyone posted.
April 24, 2009 at 12:35 pm #62258InactiveBeth, about your dh’s family history, most people with seize with a temp above 105 regardless of whether or not they’re seizure prone. You can only get so hot befor it happens. A febrile seizure is one said to be over 100.4 degrees, so it doesn’t matter if it was on the low side. And 102 is certainly high enough. Sarah’s threshold was 102 for a long time. We knew that if it reached 102 then she’d seize. I know that you’re scared, but please stay positive. I have let this consume my life, despite my trying not to. I’ve let myself obsess about germs and sickness. I’ve found that despite constant monitoring during illness, and despite giving her advil and tylenol around the clock, we’ve been unable to stop them- if she’s going to have one she is. It reached the point where I’ve felt that if I can’t control the fever, then maybe I can prevent it by keeping her away from sickness. For a parent, that becomes an almost unsurmountable task to undertake that’s not healthy or fun for anyone. So really try to stay hopeful. Of course, it’s hard not to panick when they have a fever, but I’ve learned that it doesn’t really change anything.
You said that it happened within the first hour of fever, sometimes the seizure is the first sign other than being unwell. You don’t know how long had fever for before they took his temp. Also, it’s good to have it closer to the beginning of the fever, the first day is the best. And most febrile seizures do last between 2-3 minutes though it seems like an eternity. Does he seem to have a stomach bug? I’m asking b/c that’s actually a good thing. Many kids have febrile seizures with stomach illnesses, and don’t have them otherwise. Anyhow, hang in there. It’s good that you’re keeping a log. Any info to tell the doc if needed. HUGS.
April 27, 2009 at 7:20 pm #62309InactiveA quick update. We went to his ped today for a follow up. The fevers finally stopped I guess you would say this morning. I haven’t given him any meds since 7:30am… The doc said he was “wheezy” today and tried a breathing treatment in the office which he would have nothing to do with. She listened to him practically cough up a lung and decided that antibiotics are the best course of action right now! So we are on Zithromax until Friday and hopefully by then he will be back to himself. I went to work this morning and left him with his sitter with strict instructions to call me if something didn’t seem right. She called me at 11am to tell me he was asleep in his crib and had been since 10:15am… I left him once I got home and he slept until 1pm… needless to say I have a super cranky pants right now but bedtime is very near. Thanks for all the support. I’ll keep you posted if anything else happens.
April 27, 2009 at 8:16 pm #62310Inactivejust fyi, I found it interesting at my dr.’s office today the April 20 issue of Newsweek had a very interesting article about epilepsy. I SO do NOT think this is the issue with Cooper but Lori, it was a bit insightful as I don’t have any knowledge or experience on the subject, so I found it informative and it mentioned a VERY amazing doctor (can’t remember his name) but seemed genuinely amazing at his field……
Just thought I would mention……April 28, 2009 at 10:16 am #62314InactiveBeth- Hopefully Cooper will be feeling better now that he’s started antibiotics. The bright side of febrile seizures is that you usually only have one per illness. So once he’s had it, you shouldn’t in theory have to worry about another one from the same illness. If multiple febrile seizures occur within 48 hours or within the same illness (not a new secondary one) then these would be atypical febrile seizures, which have a higher link to epilepsy. I guess my point is that you should be able to relax for the rest of this illness.
Ann Marie- Thanks for the info. I wonder if the doctor is Dr. Freeman. He’s a big doc at John’s Hopkins. I’ve read quite a bit already, but I’m going to check into it anyhow. Thanks again. -
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