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Blaine
Blaine

Help! My 2 year old had a 90 min. seizure? She almost died and we don't understand.

Hi our daughter is two years old and had a 90 minute seizure. We live in a very rural area and it took that long for an emergency airplane to get to us and stop her seizure. She also aspirated on her vomit, then stopped breathing so they put in a breathing tube. They had to give her massive amounts of meds to stop the seizing. We then were flown to a Pediatric ICU. They weren't sure they were going to save her at first and that even if they did she might have brain damage (which she doesn't). They kept her on Dylanton and sedated so she could heal. She proceeded to get better, had the breathing tube removed. After two days in PICU we were sent to the regular pediatric floor for three more days. She had a fever of 101 at the time when the paramedics showed up so they were starting to call it a complex febrile seizure. We came home and finished the last couple days of Dylanton that they had prescibed. We then met with a nuerologist a few days later. Her EEG was inconclusive because she would not sleep or hold that still. He said it was more than a febrile seizure because of the length and how hard it was to stop. Plus epilipsy runs in both sides of our family. One being her father and they other her aunt, who both grew out of of it in adolescents. The nuerologist  has prescribed Lamictal but it wil take 6 weeks to get be at full dose. We are scared to death she will do this again before dose is strong enough to control anything. She twitches on and off for small amounts at a time at night. When she woke up from her nap today and she was all shakey, kind of like a mild seizure and seemed startled but alert. We checked her temperature afterward and she was a little high. We don't know if it was a seizure or us being paranoid. Do seizures cause fevers? We don't know what to do or what this even is. We live to far out to just see if it will happen again. It almost killed her last time. Thanks for any input.

By Blaine at Sun, 11/15/2009 - 9:43pm | 113 views | 12 comments

Recent Comments on this Discussion

I just wanted to let you know that upon reading your story,  I feel that  you are a very couragous person. I,myself, have complex partia l seizures. The seizures begin many times as a bad startle such as a dog barking, etc.  I have been on many different meds such as Tegetol, Mysoline, Phenabarbtol, Dilantan, Topamax and currently Keppra XR as well as Lamictal. I would be happy to keep in touch with you. My e-mail is michaelpatrickflynn@yahoo.com. I hope to hear from you. - Michael

spike65

My son has the type of seizures you are describing. They are called status seizures. They do not stop by themselves, and as you learned, are very dangerous. You NEED to get a medication called Diastat from your child's neurologist right away. This is a rectal medicine that you give your child to stop the seizure. I am very surprised that your child was not prescribed this when that 90 minute episode occured. My son has nocturnal seizures so I have a baby monitor and a seizure alarm that goes on his bed. Whenever he has a seizure he has to have diastat. This medicine can save your child's life/and or brain.
hope this helps

alexalane

We have Diastat but the dr said that it may not stop the seizure since the first one took so much to stop. We are worried by all of the what ifs. We are interested in your seizure alarm, what do you have and how well does it work? Thanks for the info.

Blaine

My daughter was 3 when she started having very prolonged seizures, one of which lasting over 2 hours with her stopping breathing in the ambulance for a short time, and an overnight stay in intensive care. I can really empathise with you as I know how enormously frightening this can be. I couldn't sleep properly for months because I was so scared in case it happened again, but getting a baby monitor gave me some peace of mind. My daughter always becomes incredibly hot during her fits as a result of the body convulsing. As you live such a long way from help, could your paediatrician not give you some buccal midazolam or rectal diazepam and some basic training on how to use it correctly? My daughter had a 24 hour eeg where the electrodes were super glued on and I had to keep a diary of the events of the day. Good luck with your little one, you may need to be pushy and keep highlighting your circumstances to get the help you need

tristar

That is a trigger of seizures in some people. Has she had any infections/colds recently?

tlbpea...

No she hasn't lately. Is it possible to have a fever because you just had a seizure? That is the only reason we can come up with why she had the fever. We controlled it with tylenol and had no issues through the night. Thanks.

Blaine

I am so sorry you are experiencing this. My daughter had a 4 and 1/2 hour convulsive (tonic-clonic) seizure at 20 months of age, we were in intensive care for a week. An MRI after the initial seizure showed bilateral scarring and shrinkage of the temporal lobes. She is now 19 years old, and was still prone to convulsive status prior to her surgery earlier this year, but mostly had simple and complex partial seizures. We were usually able to stop the seizures at 45 minutes with a rescue medication called midazolam. My daughters initial seizure was right after the mmr/dpt/polio vaccination - any chance this might be related?

Hopefully your child won't go through another episode of status epilepticus ever again.  My thoughts and prayers are with you.

 

Best,

Vicki

 

vic

What is mmr? I have not had a Tetnus shot since my last DPT vacination when i was six months old and i am thirty-three years old. The next time you go to the health department read the waiver that you have to sign because you just might have signed all of your rights away. If I had to  guess you did. I was told one time be sure to bring a magnifying glass with you. I laughed at them but they were right.  How long after the vaccination did she start to have problems? Where both of the vaccinations put into one? the reason why i am saying al of this is because I had a reaction to DPT vaccination the government knew it was a bad batch but they did not want to cause a scare or outbreak so they did not recall that batch. Doctors were told if you say one thing about this then you will not be able to practice medicine in the USA and that meant as low as cleaning elderly people up. A woman found that in the AMA Journal for the month of the vaccination in the Library of Congress. The government was not smart enough to get rid of that paper trail but now they have you to sign their paper trail! It took me seven years before i recieved anything from that law sute and there was almost another million to go. It does not matter what it is!!! READ BEFORE YOU SIGN!!!

tlbpea...

Hi vicki, my name's Jen. You said you're daughter is 19 now and has recently had surgery, I hope all went well. My daughter is nearly 8 now and her fits started when she was 3. Every time her medication seems to be controlling her seizures, they change and need to alter the drug regime. I'm just wondering if you experienced anything like this

tristar

Hi Jen,

We were pretty lucky for quite a few yearson tegretol. It really worked for controlling most of the seizures. We had to switch to trileptal which worked although not as well for a couple years. Currently she's on keppra, lamictal and lyrica. They are helping, and since the surgery, no status episodes or convulsive seizures! YAY! She still has simple and partial complex seizures 2-3 x a week, which is a wonderful improvement! 

Hopefully your neuro will help you find the combination that works the best, and keep the midazalom close by! This is a tough one, status is awful.

My thoughts and prayers are with you.


Best,

Vicki

 

vic

Vicki, my daughter was initially prescribed tegratol but it made no difference. She's currently on a concoction of sodium valproate, lamotrigine and clonazepam. We only have absences at the moment so that's am improvement. Always keep midazolam on me anyway. Thank-you for your kind words, it's nice to talk to someone who's been through similar experiences

tristar

I'm going to log off for a bit now, hopefully people might buddy me for future chats

tristar

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