Hi All,
My daughter is a little over 2 1/2 years old and just had her 4th Complex Seizure. They are saying they are all fever related, however we can still not determine why she is having the fevers. All lab work comes back negative. My question is does anyone else have experience with this and if so any suggestions. They are now putting her on a daily medication and I hate to her on medication everyday, but I am willing to do what the doctors feel is the best course to keep her safe and well. I'm a single parent and have 2 other children, so I am extremely stressed about her being healthy & safe.
Thanks!!!!
S.
Well I guess I should have explained more about this. My daughter has been to the neurologist 5 times already. We have had 5 different EEG's and they all came back fine, including the sleep deprived ones. Her seizures come with the fevers and we have NO warning of a fever coming on and no apparent illness beforehand. Her seizures are complex because they can last up to an hour! I do have suppository Tylenol and Diastat in the event of a seizure, however this recent one happened while she was at daycare and they are not able to give her these meds via suppository means. Her neurologist is the one that just put her on the daily medication due to this being the 4th one and it lasted as long as it did. I am going to seek a second opinion with another neurologist as soon as they can schedule us. Thank you all for your wonderful words of encouragement :-) It is very difficult to watch your child go through such a horrific experience and not be able to do much to make them feel better. Right now she is very out of sorts and I am starting to feel it is from the medication because she has always bounced back after her seizures in the past and this time she is extremely moody, tired and for the most part unconsolable. I also have a 1 year old, so it is hard to give her all the attention she needs at the moment but I am doing my best.
Hi S.,
I wanted to tell you that I have a female cousin that had febrile seizures when she was a young kid. She would have seizures if her fever got to the 100F. With the time and NO medications, she outgrew it. Now, as a teen she is perfectly fine. This may be the cause of your daughter. For your peace of mind, find another doctor and get a second opinion.
Hi S.,
We just had this horrible experience with our 4 year old daughter on Fri. Interestingly enough, I am a Social Worker, working for a group of Epileptologists (neurologists who specialize in epilepsy and seizures). I also do education and advocacy on epilepsy and seizures. I would be more than happy to send you some literature or answer any questions that you may have. Where do you live? We have offices all over, and our Ped. Epileptologists are great. My daughter is in good hands. If you would like, you can call me on my direct line at work and I can provide you with more information. D. ###-###-####.
Be well!
Hi S.,
I know how scary it is to watch your child having a seizure. My son who is 2 1/2 has had about 7. They started a year ago. We had given him an EEG when he was only about 6 months old due to developmental delays. The EEG came out fine. It wasn't until after about his 5th seizure EEG & 2nd or 3rd ambulance ride that we had a 48 hour EEG. That's when the neurologist saw all kinds of stuff going on in his brain with no outward sign for us to know. Have you tried a long EEG? My son is on Keppra (antiseizure meds) , but still can spike a fever with no warning & have a 7 min seizure. I too carry the Diastat rectal medicine.
Hi S.,
A close friend had this problem with her children and went to a Children's Hospital with good results.
I wish you and your daughter the best.
Lin
Do they happen any time near when she is vaccinated? Seizures are a fairly common side-effect of many vaccination, as are fevers.
Do the seizures happen ONLY when she has a fever? HOw long do they last? Has she had an EMG?? My 7 yr old had febrile seizures which would occur with a fever over 101. They would last from 1-3 minutes long.
I would not medicate until you see a neurologist to dtermine what kind of seizures she is having.
She outgrew them by 4 yrs old which is normal.
I remember how scary it was!!!
Good Luck
Dear S.,
If the seizures only happen during fevers then I would see a neurologist before I would daily medicate my child. I have a teacher at my preschool who's son is 7 now and still has seizures only with fevers. As a matter of fact he just had one and had to go for a full neurological workup because the doctors felt he is to old to still be getting the seizures. He came out will a clean bill of health nothing wrong and there is no daily treatment necessary. His mom just monitors his fevers very carefully, and makes sure they do not go above 101 and he has been fine. They feel he is just taking longer to grow out of them. I would go for a second opinion before giving daily medication and I am sure it will make your decision a little easier. I know how difficult it is when our children get sick but try to calm down i am sure she will be fine. Good luck
Hi Stephaine,
My girlfriends daughter had her first seizure @ 4 1/2 while spending a sleep over weekend at my home while her parents were away. Thankfully, I was on the floor at the time speaking to the girls and caught her before she hit her head. My daughter followed every direction I requested from getting the phones, thermometer, pillows, blankets, clothing, etc.. I was home alone with the 2 girls.
The Dr.'s determined her fever rose too quickly and she had a bladder infection. I don't recall the name but her bladder was not fully emptying causing a bladder infection. She had 1 additional seizure and than an operation to widen the urethra. The procedure was successful and she no longer has seizures. She had to see a ped. urologist. It is more common in boys and that is why the Dr. believe it was missed up until that point.
It was a scary situation and the hardest part was calling my friend and telling her when she was over an hour away. But I always look for the rainbow in every situation. I learned something about my own daughter and her strength in a crisis (Yes I was very proud of her). She also was 4 1/2. Also,afterwards I realized my girlfriends daughter was O.K. and at least she was in a home not school when it happened.
Good luck,
S.
My son, who is now 4, had a febrile seizure when he was 2. While he only had 1 to your daughter's 4, I know firshand how scarey it is. My son's fever didn't even hit until we were at the hospital, so it wasn't immediately obvious what was happening to him. We had administered CPR and the heimlich (sp) before we realized they were unnecessary. Our doctor suggested ibuprofen suppositories, since the ibuprofen would bring the fever down and, in suppository form, it would do so much more quickly and without the need to administer orally when a child is in the midst of a seizure. Having them on hand at all times made us feel much better, not to mention having survived one episode, we felt we would be less frightened and more prepared the next time. We never found out because he didn't have another one, thank God. Did your doctor suggest this? Seems simple - perhaps too simple - who knows? Good luck.
Hi S.,
My son is now 4. He also had a febrile seizure at 2 1/2 but thankfully has not had one since. I'd always heard a febrile seizure is one of the scariest moments a parent can experience with their kids that actually feels worse than it really is. Our son had been playing and within 1/2 hour his fever spiked very high and he went into a seizure. We weren't aware he had a fever. I called 911 and for a moment forgot my home address! I was told to bring down the fever with cool washcloths which was my 1st instinct and within 2 minutes he was fine but scared. We were never told to put him on any medication, however, we were told this may happen again since this was a normal occurrence with children 2-4 yrs of age. Needless to say, we are always monitoring his fever when he's ill or feels extremely hot. The daily medication for your daughter seems much but only you can determine that. My only suggestion is to seek advice from other doctor's and stay strong. I'm hopeful your daughter will "grow" out of them. Good luck!
Hi S., I just spoke with my husband who is a great paramedic and has been in the field for 15+ years. First he said that he would be worried as a parent too but that this is not that uncommon and is not necessarily a life long problem. He said that if the tests are coming back negative than the Dr's really have to look into some kind of viral condition that may be lurking in the background. A virus, I'm sure you know, will not show up in the bloodwork as bloodwork is aimed at bacterial infections. He also said that if the onset of the 1st fever/seizure started with a difficult teething time period then the 2nd, 3rd, and 4th seizures may be due to an "automatic" response your child may now be predisposed to following any fever even one that is not that high.
To ease your mind a bit, he did say that many, many children grow out of this. He said to push the Dr.'s for more information and tell them to look down avenues they don't ordinarily follow like the virus or the teething.
I hope this helps. I know first hand how scary a seizure appears. It is heartbreaking. But you are doing all the right things. DON'T give up hope. Keep remembering that this may just be a stage in her life and you will make it through whatever it turns out be.
Be Stong. Be brave.
H.
