My baby had another seizure - GNICOLE/NEWBIE

Please anyone who deals with febrile seizure reply.  My daughter had three of these in Oct/Nov last year and then nothing.  After 5 months of testing they diagnosed her with Ashtma and reflux and she was doing fine until yesterday.  She had a low grade fever last week.  On Friday I took her to CHOP when her temp hit 102 afraid of a seizure and then yesterday out of no-where she has another seizure.  No temp from Friday until yesterday and the fever spiked within minutes without warning and boom.  She was at my MIL's house I got home from work in 10 minutes normally a  30 minute drive and attempted to take her to CHOP myself but I had to pull over and call 911 from the road when she would not wake up anymore.  (still breathing).  They took us to St. Christophers (what I did not want) but they did a good job for once - they witnessed the seizure and in fact confirmed it is not an asthma attack it is something else (a febrile seizure).  Which is ok with fever but if she has too many of them she is at risk for more seizures/epilepsy?

She just turned one and I was told by neurology she is advanced in her development so I know there is no damage but for how long?  I am so upset to start this process all over.  She was doing so good.

[babyprayers]

wow!! my daughter had febrile seizures. well let me rephrase that. she had one.. her temp went from 100. 8 to 106 in minutes, the er doctor told us it is the sudden rise in temp not how high it goes that causes the seizure. But.. he also told us they do outgrown them and there is no cause for concern.. HA!! easy for him to say it is super scarey... will luck and the grace of god she will outgrow them, I am sorry your going thru this and I wish you all the best

[GNicole]

OMG Kim, I am so sorry. You must be going crazy. Is Eva ok? Are you ok? Is Eva in the hospital?  I would demand more tests and answers as to why this keeps happening. I wish there was something I could do. I will keep you in my prayers. Keep me posted-send me a message or e-mail me. Oh Kim I feel so bad. Hugs and Kisses from Avery and I.

[GNicole]

I just e-mailed some info. to you. I am sure you already know all the info. but I thought maybe it would help. The info. is definitely reassuring regarding no long-term effects from the seizures. :)

[mami1323]

Oh my gosh...I'm so sorry you had to experience that.  That's such a nightmare for any mother to go through.  I'm with the above posters and saying that I don't believe there are any long term effects for seizures.  Although, extremely frightening to say the least.  It seems it was from the fever and that's why she had one.  I believe it's pretty common for babies when they have high grade fevers.  Not that that is reassuring or anything.  I hope she's doing better and I hope you are ok as well.  Keep us posted, we're all thinking about the two of you.

[newbie2b]

Aww.. Kim.  Damn. I'm so sorry. I thought she was better. How is she doing now?  And how are you doing? I wish that I knew more about his so I could help you. I dont know how you do it? Please let me know if there is anything I can do to help you?  I know I cant do much since I am so far but, sincerely I wish I could. I will pray for you guys and your little Angel.  I have faith that she will be ok.  Will there be more testing?

[newbie2b]

Kim, I was talking to my Dr about how Soraya seems to get fevers every once in a while for no reason (remember, teething?) and how high they get after immunizations.  She told me that some children are just prone to spike.  Although Soraya has never had a Seizure. Maybe Eva will be one of those children who get bad reactions to fevers.  

[girliegrl1723]

my goodness. i can't even imagine how scary all this must be for you. its like the minute you breathe a sigh of relief and think she's doing "ok" - then it happens. i'm so sorry for you all. the reading i've done though does suggest that the siezures can be outgrown with no long-term effects. let's hope Eva is one of those lucky children! was there any reason at all for her low-grade fever she had last week? what do the doctors plan to do if she does have more siezures? if she will be at risk for chronic siezures/epilepsy, i would do all the testing now that can be possibly be done to maybe have some sort of idea why this is happening. ugh. i will be thinking of you. try and get some tests done and please keep us updated.

[fungirl1011]

I am so sorry that you and Eva are going through all of this.  My daughter has a seizure disorder and it can be so scary.  If I were you, I would go to the Neurologist and request a 24 hour EEG.  My daughter had hers done ar Riley Hospital in Indianapolis and we are SO lucky that we did it.  Our family doctor kept telling us that she was not having seizures (said her behaviors were not lasting long enough to be seizures) so we found a new doctor who actually listened to what we had to say.  He sent us to Riley to get a 24 hour EEG and come to find out that my daughter was having seizures every 5-10 seconds, BUT they were only lasting for about 3-5 seconds.  She was having 100's of seizures a day.  Even the Neurologis said he would not have caught this if it had not been for the EEG.  She was put on Depakot Sprinkles and she is doing great.  That was until last March when she had been seizure free for 3 years so we (the doctor, Keith and I) decided to try to take her off of her meds.  Well she did great.  We had an EEG done in August and no seizures were detected.  Then on New Years Eve morning (at 1am) my daughter had her first Grand Mal Seizure.  It was the scariest thing I have ever seen.  Needless to say, she was put back on her meds and she is doing great once again.  It sounds to me like she may need to be on seizure meds.  That would keep her from having any more seizures (well, hopefully).  Keep in mind that my daughter also has other medical problems (CP, and Autisum),so her situation may be a little different.  If you ever want to talk about your experience (maybe I can answer some of you questions), please feel free to message me at any time.  I will be praying for you and your daughter.

PS.  I don't know if they told you this or not, but when a person has a seizure, it takes so much out of them.  My daughter slept for almost a week ( only waking up for a few hours at a time).  Her Neurologist said that was normal as it takes many, many muscles and works the brain very hard when a seizure is happening.  WE could not wake my daughter up after her GMS either.  My parents lived close enough to the hospital that we were able to get her to the hospital ourselves.  Also, there is a medicine that you can get from your doctor that is called Diastat.  It is a med that you inject into the rectum of the person having a seizure (but only if it last longer than 5 minutes) that will help stop the seizure.  We did not now about this till my daughter had her GMS and now we have a way to help stop them.  IF she has a seizure that last longer than 5 minutes, call 911.  IF it last less than 5 minutes, you can take her to the ER yourself (this is what my neurologist told us).  Brain damage does not usually start until the seizure last longer than 5 minutes.  I hope I was of some help to you.  Once again, I am so sorry you too are going thorugh this.

Hugs,
Kasie

[cantwait4baby]

Thank you so much for sharing your nightmare with me.  They were about to transfer us to CHOP to do a 24 hour EEG when she snapped out of it.  Then they decided to do it as an outpatient because the believe she is just having these febrile seizures from the fever nothing else but they still want another EEG done to "rule out".  Her primary doctor yesterday said the same thing and I believe this is where they come from too.

With the 24 hour EEG did they give your baby anything to relax her?  When Eva had her EEG done at 6 months it was horrible.  They tied her down for 25 minutes and she screamed.  Now she is 1 so she is really going to scream.  When she gets that uspet she gets sick.  If she is throwing up they are going to have to un-tie her.  I am crying writing this because I dont want to do this again but I know I have to.

her first EEG was normal, she even had those twitches and toungue movements that concerned me during the EEG.  The tech noted the time and said nothing happened in her brain during those.  She does not have those twiches or toungue things anymore so it must of been a normal thing.

Eva's seizures are silent.  She will go from playing and running around to sitting still and going to sleep.  Eyes rolling.  No shaking at all.  I cant even imagine what you went thorugh having to witness you dd go through that.  

I am having issues with 911 - they take forever and dont take me to the hospital I need to go to.  I am in the process of researching private companies to see if they do emergency transports.  The firetruck always comes first.

Thank you again.

[cantwait4baby]

Hi Girls!  Thank you so much for all your concern and prayers.  You guys are the best!  I just replied above with what is going on at this point.  Her doctor is not concered too much.  I love her primary doctor and I trust him.  I stopped her bethanicol (spell) yesterday.  She started taking that three weeks ago and my GUT feeling is that had something to do with this.  Well when I called pulminary to tell them what happened and what I did they agreed and said it was ok but that she is now loosing the benefit of the drug.  Her primary doctor told me yesterday that drug has a lot of side effects including seizure.  ?  Last night she was throwing up, I think it was the motrin.  I am going nuts but she seems ok, just wants me and I have to work.  Glad I have 5 weeks vacation to use up on doctor appointments .

[GNicole]

Oh I am so glad you girls are ok. Erin and I were worried sick about you and Eva.  Then went it went all day and we didn't hear anything we were really worried. Thank god everything is ok. Keep us posted. Hugs! :)

[cantwait4baby]

Sorry, I had to leave work to take her to her primary doctor now I am about to leave work and take her back to CHOP myself.  She is still spiking a fever after giving motrin and tylonel all night so I think I had enough - I need to know where this fever is coming from.  The tylonel and motrin cant be good for her.  I hardly ever had to give her meds and now I am giving every 6 hours at least.

I think CHOP will admit her and run the tests now so we will see.  My mom said she is very grumpy and wont eat.  

[mami1323]

Good luck cantwait.  I hope Eva is ok and everything turns out fine.  My thoughts are with you both.

[fungirl1011]

When they did my DD's first 24 hour EEG, it too was done as an outpatient.  They put the electrodes on her head and it is connnected to a pack that will be attached to her.  You will have to note when she sleeps, when she is active, and when she is eating.  That tells them what the spikes in the brain movement are from.  To be honest with you, it was a horrible experience.  SHe also had one done at Riley (I highly recommend doing it at CHOP if you can).  It was tough because anytime they seize or if the machine detects any fast movement the lights came on and bells rang.  The only good thing was that they had a camera on her for the 24 hours so they could see what was going on.  Then you have to wait another 1-2 weeks for the results.  It is a slow process, but one that was very beneficial for our daughter.  

I will be praying that it is just fiberal seizures.  My daughter never had a GMS until this year.  Her seizures were just like your daughter's.  She would just start staring or her legs would give out, or she would just start crying and you could not comfort her.  Do they think this is something that is likely to happen when she gets sick?  Do you know the date of the 24 hour EEG yet?  They have NEVER tied my daughter down for an EEg.  They always told me to have her sleep deprived so she would fall asleep.  A few times they gave her meds to relax, but with her other problems they did not like to do that.  My daughter is also scared of the vaccum cleaner and the dryer they use to dry the glue scared her to death.  WE had to hold her down till the electrodes were on her head.  It was horrible.  I know how you felt.  Then of course, when they took them off, they pulled her hair.  After having a few of those, she hates to have her hair messed with.  It makes fixing her hair fun.  LOL  I just wanted  you to know I am praying for you and Eva.  Please keep us posted on what is going on.  If you have any more questions that you think I can help you with, please do not hesitate to post them or PM me.  Hope you have a better day today.

Hugs,.
Kasie

[GNicole]

Kim, I hope everything is ok! My thoughts and prayers are with you girls. If you get a chance e-mail me or send me a message over the weekend so I know you girls are ok. Hugs and kisses from Avery and I. :)

[cantwait4baby]

She is not getting the 24 hour EEG she is just getting a regular EEG next week to start and then go from there they said.  They think this is her body's way of acting when she gets sick.  She had 4 episode (we call them) the first one was the worst but we got answers quick.  She had the febrile seizure but at that time all I knew was that my 5 month old looked lumped over in her dad's arms for no reason at all.  She was fine 5 minutes earlier.  911 was called and when they came they told me she was sleeping.  Idiots. - She was admitted for 5 days - it was a UTI, caused a 103 fever to spike and boom there was the seizure.  

Fine - went home - went back had a Renal Ultrasound and VCUG done - they were negative and all was fine until November 14th when it happened again.  For no reason this time and she was blue.  They could not find anything wrong with her and no temp. On Novmer 30th again this time she had a temp and was admitted but no findings - she was sent home two days later.  Then all the tests started - she was finally diagnosed with Asthma and reflux believing that was what these episodes where - an asthma attack not a seizure or a seizure from an attack.  She was put on Flovent and has been fine ever since until Wednesday.  Right now she has a fever again.  I am waiting for her doctor to call back.  I cant keep giving her tylonel and motrin her poor little body.  I am overdosing her.  She is so sad and sleepy I feel so bad for her.

Did your daughter ever have a fever with her seizures?

[newbie2b]

Yes, we are so worried about you guys. I'm keeping you in my thoughts and prayers.  I'm so happy that fun girl was able to share her story with you and that you found someone who has been through it.  Your not alone but Greta and I only know so much about the issue and can only offer our love & support.  I cant even imagine what little Eva is going through.  The poor little angel. Can they give you suppositories (sp) for her? Instead of actual oral tylenol?  The suppositories  break Soraya's high fever very quickly.  But I was only given two one time in the emergency room and those are since gone.  I bought an over the counter brand but, they dont work well at all (Fever All, it's called)  
Please let us know if we can do anything for you guys. :(

[kennedydp5]

i haven't been in this forum for months now and i remember when i was on here before i read about your daughter.  i can't offer any information, but i just wanted to say how sorry i am that both of you are going through this again!  my prayers are also w/ you and i hope that they can give you some answers!  

my youngest had 1 seizure (w/ eyes rolled back, and she completely stiffened up) at 2 days old.  but hers was b/c of an extrememly low blood sugar.  that was the scariest day of my life (besides her surgery) and i can't imagine how it would feel to have her keep going through it.  

we're praying here for her and for you!  :)

jen

[fungirl1011]

My daughter only had a fever one time when she had an episode (crying, staring off) and her temp was 105.  I called the doctor and the iodiots just told me to give her Tylenol.  i put her in a luke warm bath and her temp came down to 102.  I took her to the ER and she had strep throat.  Put her on meds (antibotics) and sent her home.  I hope all goes well next week.  Too bad we do not have an indicator that a fever is coming on.  It would save you a lot of heartache.  Please keep me informed on how you both are doing.  
Hugs,
Kasie