Complex Febrile Seizure...I Am Paralyzed with Fear.

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Hi D.,

My daughter had febrile seizures as did I. They were not classified as complex but they got progressively worse as the years went on so if she had had her last one first, it may have taken that diagnosis. Yes, she outgrew them as I did but it was the most horrifying experience of my life.

We chose to go with an old medication (Phenobarbitol) because there had been no documented long term effects. It did have many short term effects and my child was almost maniacal when she was on the medication. The best prevention is to avoid the illness that causes the fever. Fever spiking is always a possibility if there is fever. Knowing what I know now I would do everything I could to build her immune system. There are many ways to do that and if this interests you let me know and I'll go into detail for you.

I know my chiropractor (which is a principled upper cervical specialist and the largest pediatric practice in GA) has helped with seizures. The spine IS the neurological system and if it is working properly, the seizures should stop. If you don't have one and are interested in talking to one go to www.upcspine.com and find one in your area. Interview them the same way you would a pediatrician...If they don't understand the immune system, then you're in the wrong place.

D., my little girl slept in the bed with us after her first seizure and I kept my hand on her chest all night. If this truly is a febrile seizure, she should ourgrow them. There is light at the end of the tunnel. My daughters first seizure was at 14 months and her last was on August 26, 1995 at 3 years 3 months.....

God bless,

M.

How terrifying for your family! Complex febrile seizures are caused from a very sudden spike in body temperature and rarely have anything to do with developing epilepsy. Keep her on the meds, it's better than letting her have another seizure. There is a chance that she may have another one since it was complex and lasted for so long, plus the added difficulty to get it under control.

For managing a seizure, first of all NEVER put ANYTHING in her mouth while one is occurring. At best she will tear up her gums or any little teeth she has, at worst it can cause an airway obstruction. Turn her head gently to the side (or roll her on her side) and only very gently hold her in that position. Never forcefully restrict her movement.

This website has great instructional videos for Diastat. http://www.diastat.com/2-Administer/

Learn that CPR even though I doubt you will need to use it for her. Good luck momma, keeping a good thought for you.

I worked at a preschool after I had my son and a little girl had a febrile seizure. I knew just what to do because when I was younger I had worked at a school for Language Development which had children with many different issues, one being seizure disorders. But I learned that febrile seizures and epilepsy were worlds apart and febrile seizures did not necessarily indicate that a child would develop epilepsy because they experienced a seizure. I remember when I was about seven I was at my pediatricians office and a boy about ten was being carried in having a seizure in being younger, it was terrifying. another time I was in class in my teens when another student had one. I only became more and more upset by them until I made myself become involved. One summer I was a counselor with 9 nine year old girls who all had epilepsy. I had to give them each medication 4 times a day and not one of my girls had a seizure. I learned that you don't shove anything in their mouths. You just turn them over on their side. So when the little girl had the febrile seizure at the preschool that day the firecrew was impressed. It is always scary especially if it is your baby but from all I have learned, she will more than likely grow out of it. It may never happen again. You may just need to be a little more careful with her and fevers but please don't worry. A baby monitor might calm you for now but I don't think it is necesarry. Please keep us posted. I will be praying!

Our six month old had a febrile seizure Monday night. It scared the living daylights out of me, and hers was extremely short and in the early evening. Your situation would freak me out, too. Here are my recommendations:
*Sleep with her as long as you need in order to feel safe.
*Install a video monitor in her room so you can feel safe sooner.
*Find a support group or knowledge base.
*Consider post-trauma counseling.

I know I'm not addressing your questions. I don't have those answers.

Hugs,

S.

My son was hospitalized at five weeks old for something completely different but I agree with you that it is one of the worst experiences that can happen to a parent. We are not cut out to see our little ones sick and suffering. My advice would be to stay informed and get the best doctors you can get on your team. It sounds like she's doing great and that chances are this is more of a one time thing. It really seems like a long healthy life is in store for her. You, however, are still in "trauma" mode because you went to hell and back. I promise you it gets better. You and your family will be in my thoughts and prayers.

Hi! I am currently going through the same thing with my 2 year old son! Yesterday he had a horrible febril seizure and was temporarily paralyzed on his right side, he didn't know who I was and couldn't speek or see for 12 hours. They ran a whole bunch of tests and slowly he came back to normal!! I was a mess too throwing up crying non stop! They tell you that there harmless but being a mom you can't help but think the worst!! My so turned blue as well! They ended up diagnosing him with chronic fever disorder with seizures. It's so terrifying because I can't sleep and any little jolt or look in his eye I'm calling 911 thinking here we go again! I know I can't give u any answers but I just want u to know your not alone! Were home now too and he's got his ibuprophen in him and I have to make sure I keep up with it because as soon as it hits 99.0 it spikes up to 108 ad boom another seizure!! Just keep your head up and know that they do grow out of them eventually! Good luck!!

My children have not had seizures although one of my close friends from high school was epileptic and I was with her when she had a seizure on one occasion. It is always scary to feel helpless and even more so when you are the parent!

I would take the questions you wrote here and see if you can make an appointment to talk with a neurologist (or a nurse or nurse practioner in the practice). I would also see if you can find a support group.

I also live in NJ and have had good experiences with specialists at UMDNJ in Newark and St. Joseph's Children's Hospital in Paterson.

My son (about to turn 10 in less than a week), my mother, and my sister all have epilepsy (seizure disorder). My son is currently unmedicated. After his second seizure the doctor in our area started him on Keppra. But I felt very uneasy about giving him all that medication when he was having then once every year maybe year and a half. Technically, a seizure isn't harmful unless it goes on for to long. My son's was only a few minutes long, although it felt like an eternity. Eventually we took my son to Children's Hospital of Philadelphia (CHOP).
My mother is on Keppra as well. If you are going to medicate I would chose Keppra. It is a newer medication with much fewer side effects. My mom had horrible side effects from Dilantin. The downside to Keppra is you may need bloodwork to check the levels.

My older brother had febrile seizure, I doubt they were complex. I know that febrile seizures in general are very common. I have never heard of putting a child on medication for them. Usually you just have to be very cautious when there is a fever and treat it accordingly right away.

Another thing is I have Diastat on hand, just in case. I know that the Pediatric Neurologist at CHOP said that usually you follow the same pattern with seizures. I'm not sure if that is the same with febrile seizures or not. But since my son tends to only have shorter seizures he most likely will continue to have shorter seizures, same for longer ones. The Diastat is just a thing that we have here and at school to make me feel safer. He still has his seizures anywhere from 13-18 months.

Believe me every time is scary and is a complete nightmare. I don't even know what is worse being there and seeing it first hand or getting a call from school that he went down in class. My heart breaks every time. You definitely outgrow febrile seizures and it should be within a couple years. There is a chance that my son could outgrow his seizure disorder. Atleast thst is what the pediatric neurologist tells me. I guess when young children get it they could outgrow it around puberty. I'll keep my fingers crossed!!!
Good Luck! And if you have any questions, call the doctor. That is what they are there for. Don't feel stupid, it's your child. You can go in 20 times if you want. And don't be afraid to get a 2nd opinion if need be. I know my son's doctor is very against medicating young kids. He has a specific chart on how far apart the seizures are.

I see this is from 2011 but ill answer anyways.. My son is 23 months old and has had 3 complex febrile seizures. We chose not to give him a prescription medication due to side effects. Honestly the feeling never goes away I co sleep with my son now and take his temp constantly. I'm so terrified I won't even have another child. My son had 2 complex lasting over 5 min and 1 febrile at 1 min 40 seconds. My son doesn't have epilepsy he recently had an MRI and brain wave scan both showed Normal my seizure plan is at the first sign of warmth I administer Motrin or tynelol if it doesn't work right away and he has a seizure I strip him of all clothing get him naked and hold gently if its over 3 minutes I give him diazepam which stop seizure. After he comes to I give more fever medication if I can't control the fever I go to er or call 911. I carry Motrin/tynelol and diazepam a thermometer and syringes.

These sound like questions to be addressed to a professional...but my brother has epilepsy, and leads a very normal life, if that's any encouragement. Aside from that, febrile seizures are caused by fever and do not indicate a propensity for developing epilepsy.

If your doctor can offer you words of encouragement to calm you, and tells you not to worry, then I believe you should follow his advice. You really do need to schedule an extra appointment, and let it be known that you are scheduling it to ask these types of questions because you are so worried.

Also, definitely CPR, everyone should have it. Oh, and lastly, in case one happens again...there is nothing you have to do (or should do) to her airway...just put a pillow under her head and lay her on her side, and do not restrict her movement.

D.,

My 4 yr old son also suffers from complex febrile seizures. He had his 1st at 11 months and was life flighted to the childrens hospital. He has been on Keppra ever since, other than a brief 3 month period when we weined him off, but when he followed with seizures lasting for hours we immediately put him back on the Keppra.
I find that anytime he is running a fever I am nervous, though the doctors tell me that I do not have to be. He has taken seizures with a fever as low as 99 degrees. It is not necessarily how high the fever is, but how quickly it is rising. To this day, if he has a fever, he sleeps withone of us.
We always carry a diastat in case the seizures last over 5 minutes and if they do we administer while calling 911 for an ambulance. All of his caretakers know all the signs to look for and we have updated them anytime he has shown anything new.
He has only stopped breathing the 1st time.Thank goodness! But we have CPR training, so do his caretakers and we have a "CPR for dummies" booklet in with the diastat just in cast.
I understand that this is the scariest thing in the world and that you feel just so hepless when your child is going through a seizure,but the best that you can do st to be prepared,follow her doctor's orders,and be watchful.At least from what I have found.

my daughter has had 4 febrile seizures. 3 of them were complex. they were 14 months 17 months and 3 and 3.5. it has almost been a year since the last. she is 4 and a half. yes it has kinda ruined my life. i am in a constant panic. hoping they are outgrown now. we took her to a nautraupath and took her off milk. she had 13 ear infections in one year and hasnt had an ear infection since. they think the milk was lowering her immunity. she was always sick now she is not. do any of your other kids have them. u can email me ____@____.com i have rectal diazapam to stop it if it happens again that i carry around. the faster u give it to her the more chance u have of stopping it. hers ast an hour too.

Thanks for your post, D.. I am currently undergoing a similar situation and appreciate your post and willingness to share your frightening experience. My question to you is how are you dealing with the febrile seizures now and did you start the Keppra and did it help? Thanks.

Dear D.,

I have no experience with seizures and hope to never have. I just wanted to share that your post really shook me, as it did other moms here. I can't imagine how scary that must have been for you. I hope you and your husband are able to overcome your fears and trust that your little will be healthy. Wishing you strength and support!

So sorry you guys are going through this. We've not had this situation, but I want to encourage you to talk to someone to help you work through this. It is so traumatizing to watch your kids sick and hurt-- you might want someone to help you deal with the trauma that you've been through. She'll be fine!

Hi D.,
I don't normally respond to postings, but yours just shook me to the core. I'm so sorry for you and your family--and I'm glad that your daughter is doing ok now.

My husband, at age 24, had a Grand Mal seizure and has been on maintenance medication ever since (he's now 41.) I was so fearful that this condition would be passed on to my child that, when I was pregnant, I went to his neurologist to talk to her about it. Needless to say, my son is now three years old, and so far I haven't really seen anything (he did have some head tremors when he was a few months old--which completely freaked me out) but thankfully it didn't turn into anything. But, I felt like you. I was always watching and waiting for something to happen...

If they do want to put your daughter on medication, I wanted to give you the name of the one that my husband is on--it's called Trileptal. He used to be on Tegretol, but they have now discovered that Tegretol contributes to bone loss. So, after many years of taking it, my husband now has Osteopenia (a precursor to Osteoperosis.) I don't know if Trileptal is suitable for children, but I just wanted to mention what happened with Tegretol.

Good luck and G-d bless!
-R. :)

I am a mom of a now 29 month old(a little over 2, lol). She had a complex febrile seizure almost a year ago to the date. It was 7.8.2010. She seized for an hour with the first one then followed up with 3 more after that. We are blessed that she shows no sign of any effect from the incident. I have never been so scared in my life. I have been lucky that she did not need medication long term. I carry Diastat in her diaper bag AT ALL TIMES. Anyone who watches her, even for 10 minutes they have to know how to use it. I would love to find a group of moms to talk to about all of this. Please conact me by email to maybe provide support to each other ____@____.com