DD had a seizure

[Katie T]

I kinda want to share my story to get it off my chest. So that maybe when I close my eyes it will quit replaying over and over.

So Wednesday night I bathed DD2 and put her to bed at 7:45 and she was totally normal. About a hour later she woke to nurse and I noticed that her nose was a little stuffy and figured she was getting the cold that is going around. 

At 9:50pm I was texting back and forth with my brother in the kitchen and I hear a animal like noise but it is DD2 voice. I run into the bedroom to find her on her stomach having a tonic-clonic seizure. I pick her up and her lips are blue and her eyes are half open and shifted to the far side. She is making the weird -I can't breath noises-. I Run her to DH and call 911. DH thinks she stops breathing and is still holding her. She is ending the seizure by this time and is just twitching every now and then still making the weird breathing sounds. I lay her on the floor to asses if she has a air way. ( I work at a hospital as a monitor tech, cardiac is my thing and I know cpr. I have been there 11yrs and used to work the floor and have seen lots of seizures. All of this up till this point in the story is "normal" for a seizure that I have witnessed.

So she is now laying on the floor waiting for the ambulance to arrive. Her lips are still blue, hands clenched and her fingers are blue. Her eyes are closed and she is unresponsive. She is breathing but barely, very infrequent very shallow breaths and grunting on exhale. As the paramedics come in (maybe 5 to 7 min after I called) she lets out a cry and throws up and is back to being unresponsive. 

We load into the ambulance where they put a pulse ox on her finger, check her temp (none) and o2 on her and the whole ride to the hospital (20 min) she is blue pulse ox in the 70's hands clenched doing the barely breathing. As we are turning the corner to the hospital she starts crying and her color comes back of course but she doesn't know who I am. 

Once in the er they check her temp. She now has a fever of 103.3. We knew she had gotten a fever in the ambulance because they checked it several times as we noticed her body heating up. They did labs and a chest xray. They then said it was a febrile seizure and wanted to send us home. She had not even woken from the deep sleep that they go into after a seizure. All her labs came back normal. I told them I was not comfortable returning home 30 minutes away with out knowing why she seized and that I didn't think it was a febrile seizure. They admitted us for observation.

We got a room around 3am and DD2 finally woke up and knew who I was again. She seemed normal from then on out. They did a ua that morning and it came back clean. I have since taken her back into her dr and had the full ambulance report and after seeing that he isn't convinced it was a febrile seizure and we are seeing a pediatric neurologist. 

My question if you made it this far is the "not breathing" thing for that long after a seizure 'normal'? I have never witnessed it and that has me more worried than anything else.

DD has no health issues and while we have epilepsy on both sides of the family (my brother and DH cousin) she has always been healthy. What is your thoughts and what are some questions you would be asking.

[melissa17s]

Sorry you all had such a scary experience.  Glad your dd is doing better now.  Our neurologist referred us to this website, and I find it helpful to answering seizure questions.  For ds, who has epilepsy, he did not stop breathing when he had his clonic tonic seizures, but we were told if he seized for 5 minutes or longer to take him to emergency room.  He is not tired after (mostly he has partial complex and not clonic tonic seizures), but has had Todd's paralysis effecting his right side and speech.  He takes aeds, so he has not had a clonic tonic seizure for over a year.  

If it turns out to be febrile, then your dd may not experience a seizure again because kids that have febrile seizures tend to out grow them and few actually have epilepsy.  I hope that is the case, and that you do not have to have another scary event like Wed. night.  

[beenmum]

Why did her lips go blue? General epilepsy doesnt generally cause centreal cynosis.

Reflex Anoxic seizures cause cynossis. Epileptic seizures do not generally unless the child is actively chocking or aspirating. Did they check her for lower right lobe pneumonia??

I would look into the Reflex Anoxic Seizures with the comorbid respitory exhibit.

I hope she feels better. That is scary as heck.

[Katie T]

I have only read a tiny bit on that kind of seizure but she was def not holding her breath. They did a chest xray and it was apparently fine. In my research it seems like it was a clonic seizure. She did not have the tonic-stiffening- part of it.
 

Originally Posted by beenmum 

Why did her lips go blue? General epilepsy doesnt generally cause centreal cynosis.

Reflex Anoxic seizures cause cynossis. Epileptic seizures do not generally unless the child is actively chocking or aspirating. Did they check her for lower right lobe pneumonia??

I would look into the Reflex Anoxic Seizures with the comorbid respitory exhibit.

I hope she feels better. That is scary as heck.

[askew]

I have no idea, but wanted to say I am sorry you have to go through this. My dd had infantile spasms, a kind of seizure that comes in clusters, when she was 6 months old. They only lasted 4 days before the meds started working and she never had them again. Even so, I spent 6 months in post traumatic shock. It took me weeks to leave the room to pee without making sure someone was watching her. Every time I went to work I came home and the first thing I asked was if she'd had a seizure. It was a very stressful time. I pray you get to the bottom of this quickly, and that she is fine and it was a fever fluke kind of thing. Seizure are so scary, and for us, seizure meds were pretty scary too. 

[melissa17s]

"What are they like?

Here's a typical story from a parent's view:"These seizures frighten me. They only last a minute or two but it seems like an eternity. I can often tell Heather's going to have one because she acts cranky and out of sorts. It begins with an unnatural shriek. Then she falls, and every muscle seems to be activated. Her teeth clench. She's pale, and later she turns slightly bluish. Shortly after she falls, her arms and upper body start to jerk, while her legs remain more or less stiff. This is the longest part of the seizure. Finally it stops and she falls into a deep sleep.""  This is from the description of a clonic tonic seizure from http://www.epilepsy.com/EPILEPSY/seizure_tonicclonic.   It is possible to turn blue during tonic clonic.  

Did they do an eeg when you got to the hospital?  I think even post-ictal they can see evidence in the brain waves of a tonic clonic.  I would consult a pediatric neurologist specialized in epilepsy or epitologist.  It is hard for some neuros to read pediatric eegs.  

"The doctor should recognize the appearance of a clonic seizure if he or she witnesses an episode. The EEG pattern will change during a seizure, so video-EEG is very useful. A factor distinguishing clonic from tonic-clonic seizures is that clonic seizures are not followed by a period of tiredness or confusion. Tonic-clonic seizures usually are." http://www.epilepsy.com/epilepsy/seizure_clonic

[minkin03]

CYPM

[DaughterOfKali]

Omg, how scary!  I hope you get some definite answers soon.

[Katie T]

They did not do a eeg in the hospital that night. They dropped the ball on a lot of things there and I was so overwhelmed that I didn't even think to insist on it. They would not listen to me and were diagnosing her as having a febrile seizure.

We have since gone to a (useless imo) specialist and have had a over night eeg and that showed that all of her post seizure twitching she does in her sleep is not more seizure activity. I had to fight for a MRI to ensure everything is ok in her head and the Neuro told me I was being selfish to put my DD through that for my own peace of mind. (A MRI is standard procedure for a first non febrile seizure). Anywho we have that Oct 4th. 

I am having major PTSD from when the sun starts going down till about 5 in the morning. I am hating it but don't want to jump to meds just yet. Any good ideas for calming me down would be very helpful as well. : (

[DaisyO]

Any good ideas for calming me down would be very helpful as well. : (

Hey!  I'm so sorry about this scary thing.  I tend to have (serious) anxiety problems and I can suggest "mental alternate nostril breathing", a yoga breathing practice.  It really works for moderate-severe anxiety, without drugs (important for me since my baby is still nursing).

Here is one website that has a description of how to do it, if it sounds confusing google will give you more

http://www.yogapoint.com/pranayama/Nadi_shodhan.htm

good luck!

[Katie T]

I will look into that! DD is still nursing as well so meds are a last resort!  Thanks!