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C.T. asks from San Diego, CA on February 05, 2010

Two Year Old with Sudden Seizures

Hi Moms,
I would like some advice and info from all the experienced Moms out there regarding seizures. I'll give you a health history, the events that happened, and some of the results. My two year old son (turned two in Dec.) started preschool at 18 months. Amazing school, super safe, low student teacher ratio, and most importantly, he loves it. Of course two months in he catches everything the kids have at his school. We expect it because it was the same case with his sister when she started preschool. She was sick every other week for two months and then she was fine. He has been battling virus' and infections on and off and it has finally tapered off. Our pediatrician recommended that he get the H1N1 vaccine because he has been so susceptible to everything out there. He got the nasal form of the vaccine for the first round and the second round was a shot because they ran out of the nasal. Two and a half wks after his shot, he got a slight runny nose which progressed to coughing, nausea, diarrhea, and low grade fever. We just thought he caught the flu at school and kept him home to recover. 4th day of recovery, he was lethargic, had runny nose, no fever, and a cough. We planned on taking him to the Dr if he didn't get better over the weekend. Saturday nite at the end of dinner he slumped over in his high chair. His eyes were open but he was limp and was not responding at all. We have absolutely no idea what happened so we call 911, check for chocking, blocked airways, etc. He wakes up out of it and the EMT arrive and we go to the ER. Of course when we get there he is fine and running around and the Dr. looks at us like we're nuts. He suspects that he was dehydrated and fainted. He orders some labs to be done and fluids and plans on sending us home. During our wait for the labs he suddenly goes into a full grand mal seizure and proceeds to have one every 3 to 4 hours for the next 24 hour period. They admit him and put him under a gazillion tests (blood work, xrays, spinal tap, eeg, mri, ct scans). He's put on anti seizure meds (keppra) and the initial dosage is not enouh and his seizures continue. When they highered the dosage, his seizures finally stop. We are so blessed that all test results were negative but they can not find a cause. They did find a sinus infection and gave him amoxicillin for 10 days. They suspect his immune system was compromised and a virus attacked his brain. They think it could be A.D.E.M. It was not febrile seizures and no family history of seizures. So now we are out of the hospital and returning back to our routine. He is back to his normal self and you would never know he was in the hospital for five days last wk. Although the doctors tell us that he can return to his normal routine, we aren't ready to leave his side, let alone send him back to preschool. The neurologists plan to keep him on his medication for three months and re-evaluate him. We hope the virus works itself out and he is seizure free (if its viral).

Sorry it was so long. Any advice, or thoughts? Would love to hear from Moms who have had similar experiences. I know there is a lot of controversy over the H1N1 vaccine. We are considering all possible things that may have contributed to the seizures so please limit the mama bashing for giving my child the H1N1 vaccine. Thanks in advance for all your input.

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So What Happened?™

Thank you so much Moms for your amazing advice and caring words. I appreciate all the support. Its less scary when you know there are other Moms out there with similar experiences. Our lil guys is doing great and we are hoping that he continues to be healthy and happy.

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D.G. answers from Los Angeles on February 07, 2010

This is probably not what you want to hear, but for what it's worth....I am a 34 year old mom with epilepsy....my first seizure was when I was in a high chair (around 18 months we think), and my mom is sure that it was from a virus that attacked my neurological system. I guess the pharmacist where she got my phenobarbital had seen a lot of similar cases with kids around that time. Please don't beat yourself about the H1N1. Who knows if it was related....unfortunately this may have happened anyways. So I just want to reassure you, your son.... I have a very "normal" full life, married with 3 young boys, got my masters degree. I was weaned off of Phenobarbital after that initial seizure, then I was on & off meds throughout childhood with a "seizure disorder", fine through high school and then had a grand mal senior year of college and was diagnosed with epilepsy at age 25. Epilepsy is a tough thing to deal with but please know that your son can have a bright future even with a seizure disorder, if this persists. Just make sure to get a GREAT doctor. It makes all the difference. There are a lot of amazing alternative nutritional approaches that I am now discovering. There a bunch of resources out there. I wish you & your child the best!

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K.M. answers from Los Angeles on February 06, 2010

My heart goes out to you C.. I understand the pain, uncertanty, worry, confusion and guilt you are probably feeling. We as moms always find a way to blame ourselves and second guess every move we have ever made.Was it what we did do or not do that caused the problem. Was it during the pregnancy? or something we gave them or they were exposed to after they were born? I woiuld like to tell you that feeling will go away, but if you are like me, even with answers, I worry it is my fault.

My story started a little over a year ago when my 4 1/2 month old son started having atonic seizures. After the 5 day hospital stay (CHLA), and all the tests your son had, they had no reason for the seizure activity and put him on Keppra at the maximum dose, but he continued to have seizures. He was then put on Phenoparbitol also. That was increased to a high dose until after 2 months on both meds he didn't appear to have any more seizures. It felt like they were never going to stop, but eventually we seemed to get it right.
The best thing that has helped me is to be as educated as possible. My best resource that your Neurologist probably told you about is http://www.epilepsy.com. It is packed full of information on anything you can think of relating to seizures and medications. Everything you click on has drop down menues and leads to others and so on and so on. It answered so many questions the doctors had no time for and gave me an idea what I should expect for his future treatment and prognosis. Yes, it also scared me with worst case scenerios, but I also saw how lucky we were that it wasn't something much, much worse. It helped put things in perspective and give me a plan.

There are many epilepsy groups (depending on where you are) that you can find on the internet and also major yearly conferences with the newest breakthroughs and info from docs. Information is for newly diagnosed and established alike. The docs actually answer completely all the questions asked and I learned a lot from questions from the other participants. If you live in southern California there is also another site http://theepilepsycenter.org. Just check around.

You should contact your regional center for your son. Having even one seizure automatically entitles him to services in the Early Start Program. Seizures and, in particular, the medications for seizures can interfere with normal development, especially speech and motor skills. The regional center will evaluate him and decide if he need preventative services or just monitoring. Either way it is free (your tax dollars at work) and very comforting to know professionals are watching your child for any sign of developmental problems.

My son's story is turning out to be one of the more complicated ones. He still has not had seizures for almost a year, but he was showing other weird signs (that I noticed because of the website information). After lots of ongoing tests, we have a preliminary diagnosis of a mitochindrial disorder causing his seizures. They don't have specifics yet, so no prognosis. Very frustrating, but I understand the process and that goes a long was to calm my fears of the unknown future. Everything can still turn out just fine and that is what I am praying for and believe will happen.

As an aside, I was very hung up on the term "Epilepsy". No one on either side of the family has ever had seizures and to me it meant he was doomed to have seizures for the rest of his life. But in reality, it is a very generic term for anyone who has had more than one seizure in their life (excluding tumors etc.). It does not describe which seizure type it is, the cause or the prognosis. It took me while to get used to using that word.

As for the vaccination issue. It is a controversial and explosive topic. My son had only very few selective ones before his seizures started. There was months between his last one and his 1st seizure. So, no correlation I could find. He didn't even get shots in the hospital at birth. We chose to stop all vaccinations after his seizures because some cause seizures and without a diagnosis, I personally didn't feel comfortable with them. We have recently begun to slowly give him some vaccinations again at the advice of both his Neurologist and Geneticist. The H1N1 virus was causing specific neurologic symptoms, so anyone with prior seizures was advised to be vaccinated. In his case the benefits outweighed the inherent risks. Both my son and his older sister(3 yrs) got 2 flu shots and 2 H1N1 shots this past fall. We spaced them out one at a time and with NO other shots at all. We had no problems at all. No seizures.

I know this is a lot of information, but I know my head was swimmings a year ago and needed someone to point me in the direction of help. I hope you find comfort and hope in sharing our experiences. You are not alone. Feel free for contact me directly if you have any questions or just need to talk. Good luck to you all.
Best regards,
K.

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B.N. answers from Los Angeles on February 05, 2010

My niece had seizures starting at the age of about 18 months and continued until she was 4 (if my memory is correct - she is 16 now). All her tests also came back normal however they found that her seizures were due to the fact that her nervous system had not devloped enough to for her body to cool itself down internally. She did grow out of it and only had a few seizures after her intial one. Don't beat yourself up about the H1N1 shot. I gave it to my son - he got it when he was 2 - and he has been fine. My ex husband berated me for giving it to him however since I knew a few people in my local area whose kids had got H1N1, I allowed the dr's to give it to him. As parents we all do our very best to make sure our kids are safe & healthy. Be kind to yourself. You have done nothing wrong. The good thing is that your son is under a doctors care and is being monitored. I send you many happy thoughts and will say a prayer for your son. I'm not very religious but every little bit of good thinking helps!!

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E.E. answers from Los Angeles on February 06, 2010

I am so sorry to hear about this situation. I hope the doctors were accurate in their diagnosis and the seizures will not return. It sounds like he has been given excellent care. Kudos for being thorough.

One thing is for sure, you won't be returning to the hospital with H1N1. I'm posting just to say THANK YOU for getting the H1N1 vaccine. I am breast feeding my one year old. My husband, my daughter and I are all vaccinated for both H1N1 and seasonal flu.

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T.J. answers from Fort Walton Beach on February 05, 2010

We gave our children the vaccination. It's is also required if a person is active duty military (I'm sure reserve units and guard units are required, but I do not follow up with them). I have had friends and family get the actual flu and it's no fun. High fever, vomiting, chills, etc is not something I would want to go through or have my children go through - so good on you for getting the vaccination. With that said, none of of have had adverse reactions to the vaccine or other vaccinations.

Here is the latest news about the vaccination study: Medical journal retracts study linking autism to vaccine http://www.cnn.com/2010/HEALTH/02/02/lancet.retraction.au...

Good luck and God bless with your son, I hope that it will work itself out like you said above.

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N.B. answers from San Diego on February 06, 2010

Seizures can be so scary. My daughter had febrile seizers before her 2nd birthday and it scared me to death when it first happened. Luckily, she grew out of them. One of the things I did was to start building her immune system using whole-food based nutrition. I found a great suppliment that I believe in as well as my acupuncturist husband. You can find out more a www.MSjuiceplus.com.
The adult version is a capsule, but the kids is in a gummie with no corn syrup and made up of 17 fruits and vegatables grown without chemicals. We are a family of natural prevention.

Also, don't beat yourself up about the vaccines. I don't use them, but they have prevented more deaths than problems in my opinion. I just haven't found it necessary because of having a Chinese acupuncturist in the family.

Good luck!

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C.J. answers from Dallas on February 06, 2010

You are in my prayers.
I too recommend epilepsy.com to chat with others who are going through the same thing.
You will find a wealth of good information about seizures, the medicaiton, and the treatment.

One of Keppra's main side effects is known to be rage and anger, and I can attest to this as I took it and felt the effects within a week or so. I immediately asked to be taken off.
in fact it's nickname is "Kepprage".
I just want you to be aware of this in case you see behavioral changes in your little one, know that it is completely normal and to be expected.

For now, get through every day as you can, it's a scary scary process but each week that passes - each month that passes puts you a little more in the clear. I don't blame you for not wanting to leave his side.
- C.

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S.O. answers from San Antonio on February 05, 2010

We did not do the h1n1 just b/c we feel the CDC/ gov't rushed to get a vaccine out. I doubt effects of the vaccine would be seen so soon---so don't beat yourself up about the h1n1 and seizures. Effects of a vaccine are often seen months or years after the vaccine.

We are learning a lot about seizures, as my 16 year old had his first one recently.
From what I know common causes are: fatigue, exhaustion, head injury, illness with or without high fever, very low or very high blood sugar, dehydratrion.

Sounds like his bout with illness could have sparked the seizure....but if you have a good neuro. trust them. If you want to double check, get a second opinion from another neuro.

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J.P. answers from San Diego on February 06, 2010

this is what happened to my son after vaccinations. i don't recommend any type. God Bless! J.

Hi! My name is Joseph Pena. I am nine years old and I live in San Diego County. I started Sunrider 6 and ½ years ago when I was 2 and ½ years old. When I was born, everybody raved about how adorable and healthy I was. I would stop traffic in the grocery store on every aisle. I had a gorgeous smile, bright blue eyes and a head full of hair. I was born in a birthing center and had no shots or medical treatments. But, when I was about four months old I started having little tiny seizures. My mom mentioned them to the doctor and she dismissed them stating that I was probably just startled. My mom knew better, but didn’t pursue it further and they eventually went away. At fifteen months old after much procrastination, my mom took me in for my second round of limited vaccinations. When I got home, I cried for two days, ran a high fever, I could not walk, my leg was swollen, and the seizures came back. My mom could then relate the earlier seizures to my first round of shots at four months old and I was never vaccinated again. Unfortunately, that was not the end of it. I started having chronic leg pains a few nights a week. My screams were so terrible that my mom and dad did not get much sleep. I went to doctors in San Diego and in Florida and they all said the same thing. They said that nothing was wrong with me, that it was growing pains and to give me Advil. My mom did not agree with the Advil, but she had a new baby that was nursing all through the night, she was desperate for sleep and could not take the screams or seeing me, her beautiful baby boy in so much pain. She knew it was getting bad, when I came home from Church on a Sunday afternoon and dropped to the floor in screaming pain. It was no longer just a problem during the night, it was moving into the daytime as well.
Fortunately for me, my mom watched the Nutritional Seminar DVD and she started me on the Sunrider foods right away. In her heart, she knew that it was the answer. I didn’t like the one scoop of Nu Plus she was giving me everyday, but she was persistent and bigger than me and she always won the battle. And, right away, we saw a difference. They leg pains lessened, eventually went away and I never took Advil again. I looked like a mucous monster at first. My nose was constantly flooded with huge globs of green mucuous. Everyone said that I was sick, but my mom knew that my body finally had the food and energy to start working on removing the toxins and feeding and strengthening my immune system. Later, my dad had mercy on me and found a way to make smoothies that I liked. And, as my mom got well she was more creative in making them. Later, my taste and cravings changed and I started asking for Nu Plus shakes. Overtime, I was also taken off of juice and any other beverages and drank only Fortune Delight and Calli. I don’t go anywhere without it, even when we go to Disney, I have Fortune and Calli with me.
I love Sunrider. When I was little, I would flex my muscles and tell everyone to look at my Sunrider muscles. I also had strange interests in things like Dr. Chen’s book, Journey to the Sun. My mom thinks I am going to be a Super Sunrider Business Builder one day. I don’t know where I would be without Sunrider right now or how the leg pains would hamper my youthfulness and my ability to live out my life. I do know they were getting worse and my body was degenerating. I am now regenerating and am thankful that I don’t have to think about it. I am also thankful for the Sunrider trips I have been able to attend with my mom. I went to Hawaii in 2008, Palm Springs in 2009 and I have been praying for and hope to be on the Sunrider European Cruise in May 2010. Thank you Sunrider!