Hi, do any of you have experience with seizures?
My son has been having what we think are febrile seizures, but the pediatrician told me last night he doesn't think they are "normal febrile seizures" so he is contacting a neurologist for us to set up an appointment.
Of course I have all of the worst case scenarios running through my brain, could he have cerebral palsy? Could he have epilepsy? Could it be nothing and just different febrile seizures that he will out-grow?
I am trying to stay calm and act like nothing is wrong, I am trying not to google but of course that is difficult. Here is a bit of history, DS was born at 36 weeks he tried to make an early arrival when I was 30 weeks pregnant but I was given drugs to keep him in. He was born with jaundice, but not severe enough to need the lamps, he had an O2 problem when he was born and could not be in the upright position for more than a few minutes until he was 2 months old.
Other than that, he has had the normal daycare colds and had his first ear infection last month, he is currently on his second ear infection and he has strep. I am not sure why I feel the need to tell you all of this, sorry if I am giving too much info.
Anyway, hi and thanks for reading.
Re: Hi, do any of you have experience with seizures?
If you see any more seizures, video tape them to show the neuro. That will be a big help.
Try not to Google too much. If your LO is developing typically since 2 months old, that is awesome and a very positive sign.
DS does have epilepsy and his seizures were not typical looking. That said, he started meds over a year ago and has not had one since.
Lots of kids with childhood epilepsy and no other health problems go on to stop needing meds and having seizures.
I feel you on the daycare crud. RSV over here. UGH.
Hang in there!
I agree 100% with this! When DS was born they thought he was having seizures but after he was moved to the NICU no one saw him do it. It continued after we got home so I videoed it and showed anyone who would look at it. Turned out it was Benign Sleep Myclonus and the video really helped get a faster dx.
Thank you so much for your responses, I will make sure to video tape it if he has them again. It didn't even occur to me that I should do that ::duh::.
I don't want to be scared and I don't want to think of the worst case scenario, but I just can't help it I am a worrier by nature.
It's always hard to not go to worst case scenario in your head, but do your best. It truly doesn't help (even though we convince ourselves it does lol). DS2 had a grand mal seizure at 5 months of age. He continues to have complex partial seizures (which happen and we don't even see them) and they showed up on his most recent EEG. I agree the video is a good idea if you can catch one on tape.
Febrile seizures (as you probably know) are caused by high fever and are typically outgrown at some point (my SIL had them until she turned 9 and no longer has them). Has your LO run a fever with the seizures? I hope the neuro can shed some light on what is going on. EEGs are no big deal for the little guys (DS2 had his last one done at 10 months of age - in Feb). Request an MRI if the neuro suggests a CT Scan. Less radiation and more information given. Good Luck!
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
One of my daughters has Generalized Eplilepsy. Her 1st seizure was at 18 months. She is 2.5 yrs now and unfortunately we still don't have a med to control them but we do have a great neuro we are working with.
I can't emphasize enough the importance of getting it on film. Our pedi wasn't really taking us seriously (he was starting to believe what we were describing was breath holding spells) until we caught one one on video and he immediately reffered us to a neuro after we sent a copy to him.
Stay off of Google and always trust your instinct and find a Dr. that you are comfortable with and that you trust.
Hope you get some answers soon!
My DD has GEFS+ (Generalized Epilepsy with Febrile Seizures+). She had her first febrile seizure at 8 months, went 14 months with no seizures so we thought it was a one time thing. Last March all hell broke loose & we were dealing with seizures every 10 days or so, without fever. We tried Trileptal at first, then added Keppra. after 2 short EEG's, MRI, CT all of which were normal we had a PET scan which showed several areas of epileptic activity. On to our third nuero who finally gave us some control by adding Clobazam (Frisium) & phasing out the Trileptal which was aggravating her disorder. Our current doctor is amazing, he is wonderful, and we feel so much better seeing him than we had our previous nueros. He has given us hope that since she is developmentally typical (advanced in some areas) that she will most likely out grow her seizures.
As PP said get it on video if possible, it is very helpful to the doctors. Also write down the time, & length of seizures, what your LO was doing @ the onset and during the seizure, and his temp. If it is a true febrile seizure he would have an elevated temp. It dosen't necessarily require a high temp, in young children a seizure can be brought on by a quick change in temp of only a degree or two.
If you feel your pedi is not taking you seriously you should probably start looking for another. There is a whole spectrum of GEFS+. Most children with febrile seizures do outgrow them by age six.
Makinroom,
That is awesome news for Jayden! I know you guys have been through the ringer.
So glad you found a good neuro who is helping him!
Sorry to hear that this is happening. Seizures are so scary. Google is not your friend. Our best NICU nurse taught me the mantra "I will not play what if". Best advice I've gotten in my life. (Easier said than done, though...)
In addition to the video, I suggest keeping a notebook, including details, and questions that come up. It helped us so much to have one with us when attending appointments. Kept good track of names/tests/results/dates, etc. I still use it (had to add another one...13 months later) Good luck