HIGH FEVER SEIZURES AND DROP SEIZURES

Frances - posted on 01/10/2013

My 3 yr old son with autism started having seizures four months ago...seems like always in the early morning when he's sleeping or about to wake up. He's had one every month..has had two really bad ones that took him to picu unit at hospital-as lasted very long but now with diazepam they are usually lasting 10-15 minutes..they have ran all tests on him...lumbar tap,blood test,cat scan, MRI and EEG..all normal. now as we use diazepam as recommended by his neuro when the seizure lasts longer han three mins. every time though it is a trip to the er by ambulance because it's dangerous when seizures last longer than five minutes according to his neuro. He has frequent ear infections and seems to have a seizure every time he has an ear infection. We are getting ear tubes put in his ear to see if that will help we were recommended to go to an ENT ear nose throat doctor...And also since the last seizure on dec 14 2012 we've started him on pharmax finest pure fish oil with essential orange(flavor to mask the smell) (5ml a day)...and see if that will help..heard that the omega 3 fatty acids in it help the reduce brain inflammation and fish oil is perfectly safe to give every day..he does seem more alert now since taking fish oil..keeping our fingers crossed this may work as we don't want to medicate him..have heard many scary side effects on seizure medicines especially for toddler s with autism.

Tawny - posted on 08/23/2012

My 9 month old daughter just spent the weekend in the hospital due to what they were saying were febrile seizures, and I can totally agree that they are very scary! She has an EEG this afternoon to determine whether or not they were only febrile seizures.



She woke up Friday morning and was running a temp of 100 degrees. I also noticed she had an infection starting in her left ring finger and her left ear was red. I was going to call her pediatrician (the office doesnt open until 10 am) and by 9:45am she had fallen to the floor and was totally unresponsive, shaking, and was turning blue in the face and lips.

We called 911 and when the medics got there (at 10:00) they had me dress her down to nothing but a diaper and sit her on the floor. She continued to shake for about 10 minutes. The ambulance got there at about 10:10, and started to load her up. On the way to the hospital (which is about 5 mins away) she had a second seizure, and they put her on oxygen.

Once we arrived at the hospital, and got her into a room, she had a third seizure (in less than 2 hours).

They ran all kinds of blood tests/cultures, did a CT scan, and xrays, all of which came back normal.

They had us follow up with her pediatrician who believes she was in "status" (not too sure what that is), so he ordered an EEG, and said he believes she was misdiagnosed in the hospital (let's hope not!)

So, I totally understand how you feel! Hopefully we get some answers at her next appointment!

Sonto - posted on 08/04/2012

Hi Everyone I thank God for the Internet reeally, coz Im also traumatised by febrial seizures that attacked my 6 year old for the first time this year. I am always scared they are going to return I let her sleep in our room so I monitor her sickness. Extra special attention will hep her I know. Hang in there Guys.

Summer - posted on 11/10/2011

Hi guys I am happy to report that I didnt put my son on the meds and he hasnt had any since June thank the Lord and I know through his grace and loving kindness it can stay so... so guy dont forget to pray it works in ways u will never imagine

Patti - posted on 11/09/2011

Most importantly, get a diagnosis. My daughter has Dravet syndrome. This starts around 6 months of age and sounds different from your child's, but it's VERY important to get an early diagnosis and appropriate treatment. http://dravet.org/about-dravet/what-is-d...
Good luck!

Amy - posted on 10/14/2011

I posted this on a different thread, but I wanted to share it here, too. For a year my daughter had multiple unexplained fevers, meaning no viral symptoms. The DR was convinced that a year ago when she suffered a 6 hour repetitive seizure (status epilepticus(spelling?) her hypothalmus was disturbed. Then I found an underlying mold allergy. Here is our story:

I wanted to check back in and let everybody know that one year after our ordeal began... be have solved the mystery of the unknown fevers causing my daughter's seizers! After some investigation we learned that we had a severe water leak in our home causing mold in the sub-floors of our home. I began looking at our daughter's first illnesses and saw they began to occur just 5 weeks after we moved into this house. I googled mold allergy and read that a severe mold allergy will cause sinusitis, URIs, and fevers... the only 3 things that have made her sick since she was 10 months old. Her worst illness (viral meningitis/encephalitis) occurred from an un-resolved sinus infection that she contracted last September... which happen to be a bad month for mold allergy sufferers. Anyway, we had her tested and the only thing she is allergic to is mold. We have our sub-floors being replaced, and her DR (still continuing the phenobarbital) has also prescribed a steroid nasal spray to control the allergy. Since being on the nose spray, we have been fever free... therefore seizure free. She has had low fevers (not higher than 100) but because the steroid is working to control her bodies response to the mold, she is not spiking these crazy 105+ fevers every couple weeks like she used to. It has been a true blessing and we are about to celebrate 3 months SEIZURE FREE!!!! In the past year we were not even able to go 3 weeks! WOO HOO! Good luck to all of you... and for those of you who say that you can't stop worrying about your baby, don't feel bad! I still sleep on my daughter's floor at night- some things in life are just too precious to take for granted and I know when I am ready, my bed (and husband) will be waiting for me :)

Danielle - posted on 08/16/2011

Im so glad all of you ladies are willing to share your experiences. I luckily have not had to deal with these, but Im on edge every time my daughter (16 mo) gets a fever because I had them a few times as a toddler/child due rapidly rising fevers from ear infections. Does anyone know about the hereditary factors in these seizures? I heard they can run in families but not all, as I am the only person to ever suffer from seizures in my family, as far back as my mom knows of. I have myself freaked about the "what ifs" :( I give all you moms credit for being so strong.

Summer - posted on 08/12/2011

My son started having Febrile Convulsion at the age of 10 months they are calling it that since they say the seizures dont come without fever, he had 7 attacked last yr and 3 so far for this yrs they want to start him on Epilim but i am having two minds so i waiting it out for this yr if its less than 7 i will wait again next yr and if it keeps going down then i know he is growing out of it but if it keeps climbing i will have to put him on the med. I am now hearing about the drop seizures he has never experience that and I hope to God he dont since he has to start school in September. My son EEG and CT Scan came back normal, but at least i am here to talk too.
Summer

Ida - posted on 07/16/2011

My granddaughter has had febrile seizures since 6 months old, she had one about every year until June of 2011 and had another one in July. It started out with a new one called a drop seizure and the next morning she had another drop seizure followed by a febrile seizure in the doctors office she was hospitalized, a eeg test was done and I was told it was normal and once again that she had a viral infection. Now I stay on edge all the time. Please someone tell me how you cope. All I can do is pray and try to protect her and hope that she will outgrow them.

Michelle - posted on 03/09/2011

My daughter who is 3.5yrs old had her 1st seizure at xmas whih i was told was because of a high fever with swine flu she then had another 4 seizures a few wks ago fron a throat infection all were within the same hour.I am a nervous wreck, i constantly panic if i think she feels hot or starts to stare into space (this is something she does before a seizure) its taking over my life as im so scared she will have another one i constantly check her temperature and panic when i think she looks slightly unwell.Reading that there are other people in the same situation is a little comforting as i do feel alone with this.

Michelle - posted on 03/09/2011

My daughter who is 3.5yrs old had her 1st seizure at xmas whih i was told was because of a high fever with swine flu she then had another 4 seizures a few wks ago fron a throat infection all were within the same hour.I am a nervous wreck, i constantly panic if i think she feels hot or starts to stare into space (this is something she does before a seizure) its taking over my life as im so scared she will have another one i constantly check her temperature and panic when i think she looks slightly unwell.Reading that there are other people in the same situation is a little comforting as i do feel alone with this.

Michelle - posted on 03/20/2009

My daughter was 7 months when she had her first seizure and she was put on meds at 9 months old. We have tried a few meds but now she is on Tregrol (sorry about the spelling) My daughter is now 17 and has been seizure free for about 7 years. I do still have her on her meds because we have tried taking her off them and a few months later she had a seizure in her sleep and I just don't think I can go through that again. So I know what ur talking about when u say how scared u were/are. My daughter is also mentally Challenged She goes to a special school,she does not speak at all, not potty-trained and can not feed herself. So in other words,she is still like the baby I brought home from the hospital just weighs a lot more. So I know how feeling all alone can get to someone. I just started attending a support group for parents who have "special" children and it has helped me sooooooo much that now I am thinking about becoming an advocate for children. So try to find a support group in ur area and u will see that u r not alone. I hope this info. was helpful. Best Of luck.

Jennifer - posted on 03/20/2009

Hello. My second son had his first febrile seizure when he was 9 months old. I know what you are talking about when you say they scare you. Its like you are helpless and cannot do anything to help them. He is 17 years old now and hasn't had one since he was in elementry school. they said he grew out of them. But its always in the back of my mind what if he didnt. it is something that is always on my mind. I only hope that maybe your daughter will grow out of them too. as for the drop seizures that you were talking about that was the kind my third son had. He could be outside running around playing and then be on the ground he too has not had one in a while but still the thoughts are there. I wish you all the best with your daughter and if you want to talk anytime I'm here Jennifer

Danielle - posted on 03/09/2009

i know how you feel, my daughter is 9 years old and has had epilepy for a year now, in feb o8 out of the blue i found her in a state she was critically ill i had to call an ambulance . i was so scared, she spent 2 days in intensive care and 10 days in hospital , she had a cat scan EEG MRI and lumber punchers , a year on she is still fitting and we are waiting for a second EEG and MRI scans to be done, we still do not know what started that first major fit or what triggers the other fits, she has been on 4 different medications and we will be trying the 5 th one soon, i am still scared to go into her room each morning and it is her sister who alerts us to the fits,

she gets on with her life and seems not to let it bother her,

i dont know where she gets her courage from!

i hope your daughter is o.k, she may grow out of them in time, remember you are not alone, i find it so nice talking to other parents like me, i know i am not on my own, so if you want to chat i am here to listen

danielle young

Amelia - posted on 03/09/2009

Hello, my son has been diagnosed with Epilepsy.His very first seizure was due to fever. He has febrile seizures, grand mals, and what "we" call limp seizures ( but iam sure they are the same a drop seizures, as he will all of a sudden without any warning go like a piece of spaghetti, and looses all his muscle tone for a few seconds, I was never told the name of them but was told that it is a type of seizure) His seizures are very well under controll with his meds,he has not had a grand mal or drop seizure for very long time. If he is going to have any seizures it most likely that it will be when he is not well. Although we just got through a nasty cold with out ANY seizures!! Yesssss, that goodness for meds. I would most definatly get her in to see a neurologist, having answers will ease your mind a little.

Jennifer - posted on 03/09/2009

Hi there...my son actually started a seizure disorder at the age of 7 after a febrile seizure. It was due to pneumonia. From what the doctors have told me, it's not how HIGH the fever gets to (my son's was over 105), but it's how quickly it gets there, thus resulting in a febrile seizure. My son's fever skyrocketed from 100 to 105 in 5 minutes, after I had given him children's acetaminophen. I am unsure what "drop seizures" are, as my son has only had tonic-clonic seizures (never heard the term), but he typically is unconscious with jerky movements. My only suggestion to you is to keep the fevers from climbing RAPIDLY by immediately putting your child in a lukewarm tub, rubbing them down with cool, damp washcloths, etc. Viral illnesses can cause seizures, sadly, because they are usually present with a fever. You're not alone in this...I too am VERY scared when this has happened to my son. It's horrifying to watch. Thankfully I can say he hasn't had one since December 5, 2007. Good luck!

Elizabeth - posted on 03/08/2009

My son is 8 now but started having febrile seizures at 10 months of age. He had 13 between 10 mo. and 5 yrs old. We did EEGs and saw neurologists at private hospitals. They had no answer but febrile seizures. They always told me he'd grow out of them between 4-6 (girls are even younger usually). But I'll tell you those years were terrifying! I feel you! I was only 18 when he had his first seizure and like you had no family history and none of my friends had every dealt with it. Just take comfort that its probable that she will out grow them.

Kleio - posted on 03/07/2009

My son was 12months old when he had his first febrile seizure. He stopped breathing and had to be resusitated. These seizures lasted until he was 7 years old & were very frequent until I started him homeopathy  the fevers were always febrile related so the key was to regulate his temp. They are very scary at times but I found that Homeopathy was the only key in regulating his temperature. A good Homepath would take a case history & advise which homeopathic remedy to use during the onset of a fever. My son is now 9 years old the febrile convulsions have stopped but due to a scar on his temporal lobe he is now suffering from temporal lobe epilepsy.

Libby - posted on 03/06/2009

Have you seen a neurologist? And have they offered treatment? My son, now 17 months, has been having "febrile" seizures since he was 9 months. I say it in quotes because he usually has a fever, but it's usually only between 99 and 101--very low for a typical febrile seizure. He has had nine or ten seizures now, over these past 8 months, and they have often been longer than 5 minutes. My son's neurologist put him on meds, with the hope that he will eventually grow out of the seizures, but that for now, with their frequency and his susceptibility, we needed to take preventative measures so that no permanent damage was done. I am not sure if he will grow out of them--the Dr.s hope that he will, but can't say. But for now, I know that the seizures have been less. We have been a month and a half without one. So, I recommend asking about medication. I didn't want to medicate him at first, but, you know, it's so much less overwhelming now. Before, I felt like I lived every moment on edge, worrying if he'd have another one. It was always so hard to predict and every one felt like a blow to the heart. For weeks after each one, I was depressed and crying. Now, I have felt so much better--still worrying, but less overwhelmed. It is such an overwhelming thing--not knowing when they're coming or what it will look like. It's horrifying to watch, too... Another thing to keep in mind is that they usually say febrile seizures end by the time the child is 5 or 6. I hope this is true!

I hope you can find a good solution!

Sharilyn - posted on 03/06/2009

Have the doctors done an EEG? One of my daughters had 8 seizures in 3 days. After the EEG they were able to see where the seizures were starting in the brain and get her on medication that has slowed / stopped her seizures. She started having febrile seizures when she was 1 1/2 and she is now 5. It has been a long hard road but the EEG really helped find the solution.