My daughter Aurora's Story....

AurorasMommy · #1 03-24-2008, 10:58 AM

Hello,

My name is Megan, and I am here to gain support, advice, and knowledge on behalf of my 2 1/2 year old daughter Aurora.

Here is her story:

I have birth to a beautiful baby girl on September 25th. My pregnancy and labor were perfect...

I brought my daughter in for her routine 2 month vaccinations, and thought nothing of it. That night she screamed and cried for over 5 hours, and the next day had her first seizure. I called the doctors and told them I thought she had a seizure and there response was "Probably not, babies do a lot of jerking and staring... and if it was a seizure, febrile seizures are very common!" However my daughter was on tylenol since the day before and had NO FEVER! The same spells continued for 3 weeks, she would have wide eyes and raise her right arm up and jerk it back and forth, and then drool! The crying also NEVER stopped. The doctors said it was colic, it was my breastmilk, it was dairy from my diet, ect ect! 3 weeks later, my daughter started screaming and pressing her little hands against her head while out to eat with a friend. I told my friend there was something very very wrong and we left the resturaunt and I wanted to take her to the docs... as we got to the car Aurora projectile vomited and went unconcious! We rushed her to the ER. There they transported her to a bigger hospital.

While at the hospital they were going to discharge us and said she was sick with the flu. Just as the nurse was walking out after discharging us Aurora had a seizure. THEY SURE STARTED TO ACT FAST! An EEG confirmed that she was seizing every 3-5 minutes... and an MRI showed she had a SEVERE intercranial hemmorage in the Basal Ganglia. Because her bleed was so far in her brain she didnt get a shunt or anything, the blood disappated over a year n half period. She was left with some left side weakness, and that was it! I THANK GOD everyday that my daughter wasnt injured too severly from what happened... and the doctors say that what happened is "UNKNOWN!" They do not say it was the vaccinations, they ruled out shaken baby, they ruled out malformations in vessels, blood clotting disorders, they ruled everything out... and wrote on the chart UNKNOWN!

My daughter went through PT, OT, ect ect. She regained her left side, and hit all her milestones. She just had a developmental assesment done, and she is at a 3 1/2 - 4 year level with language... and he noted only a small weakness on her left side. The weakness on her left side becomes bad only when she is sick or with a seizure! He felt she would not qualify for any special ed, and that she would have no problems in school!

After the bleed Aurora stayed on Phenobarb for 6 months, and then was weaned. Over a year period I had thought I witnessed Aurora having a couple of seizures.... however she wasnt put back on meds! An EEG did show that she had an ABNORMAL EEG and was spiking in the area of the scar, however it showed NO seizures. And the spikes were minimal.

8 weeks ago I gave birth to a beautiful baby boy, Wesley! Aurora was so excited to become a big sister... she is GREAT with babies! I knew that this would bring about BIG change. 4 days after I had Wesley Aurora woke up at 3am and had a seizure. She sat straight up in bed, and was wide eyed, pupils huge, and was swallowing. This lasted about 5 minutes and she threw up and then she snapped out of it, however she was very out of it, and walked into walls! Again a week later she stopped dead in her tracks in the playroom and was wide eyed, pupils huge.... she seemed like she was still aware though, I asked her to look at me and she would! Within a couple of minutes she started the swallowing, and then followed by throwing up... and then swallowing again. This time I was home alone, so I called 911.... I AM SO GLAD I DID! It takes 25 minutes to get to the ER, and she did the swallowing and staring for 20 minutes and then it turned into a generalized seizure for 15 minutes, and the only reason it stopped was because they gave her meds in the ER to stop it, they called it STATUS!!!!! After researching this, I was scared to death that she would have another seizure!

Her neurologist put her on Keppra 1.75 ML twice a day. She hasnt had a seizure in 5 weeks. She has done well with the meds, however it has made her more testy.. but nothing we cant handle!

She did go in for an overnight EEG because she was twitching really bad in her sleep... the EEG ruled out seizures, and they said it was Benign twitching! I will know the full EEG results this week. I do know that it was still abnormal, and she had spikes in that area of the scar... I dont know if it was more or less than last time.

So that is where we are now.... no seizures, which I can guess is a good sign????

I have so many questions.... we are going to be meeting with the Epilepsy Specialist next Tuesday for the first time... but in the mean time I didnt know if you all would mind giving me some insight!

QUESTIONS:

~Because my daughter has a scar in her brain, does this mean she has NO chance of outgrowing the seizures?

~They said Aurora has Complex Partial Seizures, and the last one turned into a Generalized Seizure, and then STATUS... has any of you had a STATUS seizure? Does that mean she is prone to having STATUS everytime?

~Is it a good sign that she hasnt had a seizure in 5 weeks... can I feel some relief or should I still give it more time?

~Because her seizures were so irregular from the start (1 seizure every 10-12 months... should her seizures stay that way, or could she be at risk for increased seizures or intractable seizures? I do know alot of times people have increased seizures during menstrual cycle... I guess I am asking if Auroras seizures should stay like this, or could she be at risk for having intractable seizures? I read alot on forums and message boards, alot of parents children cannot get control of there seizures, was it like this from the start?

~There is a lot of controversy between vaccines and Epilepsy... I dont want to debate what happened with my daughter.. I have not vaccinated her again. My question: Is the Tetnus portion ok to give to someone with epilepsy or can it increase seizures?

~Is there a link between floride and seizures?

~I have been giving Aurora vitamins since she was 6 months old... Reading on here, I would say that is a good thing? Is there anything extra I should give her?

I do know that lack of proper sleep is a HUGE trigger for her... that seems to be what causes a seizure each time she has ever had one. So I am on top of getting her to take naps and go to bed early!

~Do you find that when you or the person you know has a breakthrough seizure is it because they were sick, didnt get enough sleep that night or are they just having them just because?

~Is there anyone on this forum that has controlled seizures? How long have you been seizure free for? What kind of seizures did you have, and was there a reason why you were having them? I read alot about the uncontrolled seizures and no meds working and it freaks me out..... I PRAY that Aurora doesnt get that way! So it would be nice to hear from people who do have controlled seizures!!!!!

ANYWAYS, that is it for now! I hope I dont come across as overwhelming! I really appriciate everyone who responds back! I am looking to get myself comfortable with this situtation, and right now I am so edgy!!!!!!

Megan & Aurora

**skillefer** · #2 03-24-2008, 12:02 PM

Hi Megan! I've gone 9 years seizure free. My seizures started after a head injury when I was around 3-4 years old. You know how parents say "don't jump on the bed"? There's a reason.....I landed wrong, and smacked my skull on a concrete floor. I also broke my collar bone. My doctor told my mom to give me phenobarbital till I was 13. But then my family moved. My new pediatrician said I hadn't had any other seizures after 1 year of meds...so he said to quit taking the meds. At 13 my seizures came back with a vengeance. I was put on depakote as well as phenobarbital. My first seizure when I was 13 happened at school. We were playing dodge ball....when I got a glazed over look in my eyes, walked to three different spots on the basketball court and puked. After that, I had a grandmal (tonic clonic) and ended up taking a ride to the hospital.

My parents had 2 different ways of reacting...My mom freaked out and panicked. She always looked nervous and scared, and was very protective. I always felt guilty for having seizures when she would get me from the hospital. My dad was very laid back and would joke...."You wanted to get out of that spelling test that bad??" Which made me feel a lot more at ease, and not at all guilty about having seizures. Now, as an adult, I went 9 years without seizures, and got an advanced degree. However, recently, I've had some seizure activity. Most likely triggered by sleep deprivation, and low blood sugar. (I'm also hypoglycemic) So can they be controlled? Yes..depending on the individual. Remember...epilepsy is very individualistic. Because every brain is different.
My advice, read the epilepsy 101 thread. It'll give you some good basic info. And feel free to ask any questions.

**speber** · #3 03-24-2008, 12:13 PM

I'm so sorry your little girl is having to go through this.

On the bright side (and there is!) MANY people here have relatively controlled seizures.
I began seizing at 8 for no apparent reason...I had 3 or more MAJOR tonic clonic seizure's a day...but anti-epileptic drug's did ultimately keep me controlled.
I 'grew out of them' for lack of a better explanation...and now only have them nocturnally IF I've worn myself out severely or I'm very sick.
I'm happy the Keppra seems to help Aurora, but don't forget to research the alternatives as well...there may be something useful there for her. They can help keep the dependency on those nasty anti-epileptic drug's down to a minimum!
I agree whole-heartedly with skillefer...check out Epilepsy 101!

You are among friends!
Spencer

**RobinN** · #4 03-24-2008, 03:37 PM

Megan - yes the tetus still to my knowledge has thimerisol in it. I would ask to see the box before allowing that vaccine.

My daughter has a birthmark on her brain, but I have mixed information on this. Two say this is not the area that her seizures are beginning, and the "birthmark" is not of substantial size to be causeing this sort of occurance. Two others have pointed to this area and say this is what is causing seizures.

For me I know there is a different cause triggering her seizures, and this area might be playing a role or might not be. Without a SPECT test I guess I will never know.

Have you looked into the types of alternative treatment being used by the ASD community for neurologist care? Have you had metals tested? Have you seen any sign of intestinal distress or sensitivities?

My daughter is not on meds right now and the seizures are actually getting better. Intestinal issues are clearing up and perhaps nutrients are able to be absorbed properly.
We are also beginning neurofeedback.

Sorry ... in a big rush but I wanted to say WELCOME I am glad that you joined us.

**skillefer** · #5 03-24-2008, 03:46 PM

Oh! I probably should add that my originial doc (military) told my mom and dad to give me pheno till 13, and that I shouldn't have any problems after that.....so who knows...I might have been able to dodge the seizures if I hadn't quit taking the phenobarbital when I was 6.

**Bernard** · #6 03-24-2008, 10:06 PM

Hi Megan, welcome to the forum.