Anyone with unknown causes of seizures in children??

Tarah - posted on 04/21/2011 ( 18 moms have responded )

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My son had his first seizure when he was 2 1/2. It happened out of nowhere....we don't have a history of them in either side of the families. He was running a low grade fever that day just around 100 but he was totally fine otherwise...playing with my daughter and just running around like he always does. Anyways that evening he fell asleep on our couch and when he woke up he came straight over to me asking me to pick him up, then he started to act as if he was going to throw up. He never actually threw up but his body wanted to...then shortly after that I looked at him and realized that he was gone, he wasn't shaking or anything but what he had was called a focal seizure...his eyes were stuck in one position and he was just gone. We called 911 immediately, within 20 minutes they had him to Children's Hospital and as soon as they got there he lost the ability to breath on his own. He had to be intubated. His seizure lasted 2 hours long and he couldn't breath on his own for 1 1/2 hours of that time. It was the most frightening thing we have ever been through. The doctors did EVERY test they could possibly do and we were at Children's Hospital of Los Angeles which is one of the best childrens hospitals in the entire world and they found NOTHING. They told my husband and I that that's the best answer we could possibly ask for but all we left with was a big question mark after almost loosing our son. So now what? This all happened on Oct 10th and then it happened again about 4 weeks ago. This time he didn't loose the ability to breath and the seizure lasted 30 minutes which is still long for a seizure (usually 5 to 10 minutes tops) both times he was running a fever. My son is a perfectly healthy beautiful smart little boy, he isn't delayed in anyway. We are taking him to a neurologist tomorrow to see what we can further do to figure out what's going on but I am dreading every bit of it. It's a mother's worst nightmare to have something that is wrong with your child and if you can't figure out what it is how can you help them? Does anybody have any stories similar to this? thanks

Tarah
Mommy of 3 little ones. Shyler 4 1/2, Hudson 3, Violet 11 months

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Johnna - posted on 04/27/2011

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My son had his frst grand mal at 10 months, no ryme no reason. The only thing that was different in his life was I had just stopped breast feeding. We took our son to the hospital and was told he had hypsarythmia (sp), that we could put him on meds or not. We live in Casper Wyoming. After years of drugs, specialists, every test known, UCLA, brain surgeons, we decided to put our son's life in Gods hands. The meds had done more harm than the seizures, which were sometimes hundreds a day. No one knew why, the cause, the cure. You are so very blessed that your son isn't delayed and is perfectly healthy. I wasted so much time and effort asking why, never got an answer. My son is now almost 19, he cannot talk, but I can read his wants and needs. Plus he lets us know by pointing. He isn't toilet trained, can't dress himself, very delayed in a lot of things. He is highly medicated and yet continues having seizures on a weekly sometimes daily basis. Yet I still don't know the cause. So you see Tarah, some things we will never know the reason for. My advice to you, after 18 years of dealing with specialists, you know your son better than any doctor ever will, weigh the odds of every med, look into natural stuff like the ketogenic diet, don't make your sons life all about the seizures, focus on the good, stay strong, keep your faith, you are your childs best advocate, educate yourself. Keep your marraige strong, your children need you both. I will pray for strength for you as it has been my strength that has carried me through. God Bless
Johnna Hindman

Elisa - posted on 08/04/2012

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My son started having Infantial Spasms right before his first birthday. He went through a barrage of seizure medications with all of the horrible side effects. None of them worked and they could fins no really cause for them in his genetics, brain structure or even blood levels. One a whim, the neurologist read something about a link Cerebral Folate Deficiency (the brain not having enough folinic acid, the form of folic acid the brain uses, to function. Despite the levels being normal in his blood, they were severely low in his CSF. He was immediately started in a folinic acid supplement. The seizures stopped less then 6 weeks after we started this medication. He has an LP once a year to check his levels and we have finally found a weight/ med (Kg/g) ratio that keeps his condition in check. There are causes found for this disorder but our son does not have any that have yet been discovered. If he has had the EEG done, genetic testing etc done, I would ask them to check is CSF levels. This does mean a lumbar puncture which is invasive and can be a scary thought for any parent but it saved my son.
Hope this helps. Message me directly is you have any other questions. Good Luck and I will keep you in my thoughts.
-Elisa

Karen - posted on 04/14/2012

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Often the EEG and MRi can be negative-this does not mean your child does not have epilepsy! My son has focal seizures and we have been told it is temporal lobe, than benign rolandic and now his EEG shows nothing although he continues to have seizures-althought medication has helped significantly. It also sometimes takes several seizures to show up on EEG. Child neurology is one of those field where there are no definities (for the most part). I suggest that you talk to your doc about meds if he continues to have seizures and they should also prescribe Diastat for seizures lasting longer than 5 minutes. good luck!

Beth - posted on 04/27/2011

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Tarah,
I understand how difficult it is to not have an answer. If he is having seizures that are being triggered by fever or illness those are known as febrile seizures. Some children can experience more than one febrile seizure. There are varying statistics, but there is a greater chance of your child experiencing a second febrile seizure if any of the following are true:
if there is a history of epilepsy in your family,
if a first febrile seizure occurs before 12 months of age or, if a fever under 102 degrees precipitated the seizure.

Since the last statement is true, it could be that these are febrile seizures and he may never have another one. However, having an EEG and CT scan done will give your Neurologist answers and will make you feel more at ease, regardless of the outcome. It may be that these febrile seizures are the precipitators of an enivitable diagnosis of epilepsy as well. The testing will help you to know if that is the case or if these are just isolated seizures because of the fever.
Since he experiences prolonged seizures I agree with the mom above, you need to have DiaStat rectal valium on hand so that you can get him the help he needs to cease the seizure, should he be diagnosed with epilepsy. I would also keep acetaminophen at hand with even a low grade temp to keep him from having febrile seizure breakthroughs until an answer is found.
Best wishes:
Beth Baker
ASD/Epilepsy Parent Advocate
Mom of Caleb 11/07/01-1/15/11
http://calebsmom-bethcbaker.blogspot.com...

Nicole - posted on 04/22/2011

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Tarah,

Sorry to hear you are going through all of this. I do hope that you can find some answer's to your problems and what is going on.
To me because you said that he's had a fever with both of his seizures that the fever's have something to do with it. I don't know if you heard of them or they told you about it. You can also look up information on the epilepsy foundation's website.
I would also if he hasn't had one ask for him to get an EEG. This is a test that can tell you that he's having seizures and the kind of seizures.
My daughter was dxed the first time with generalized seizures March 2009 and then 6months later was dxed with complex partial epilepsy into generalized seizures. Let me tell you it's a lot to go through. They are not sure why she's having them or where they came from. I would get a notebook and write everything down including questions if you have not started this already. This will help and then you can looking things up if you need to. I hope this does help a little.

Nicole
dylan (07/02/99 developmentally delayed, sever adhd,odd, gerd, very picky eater, mr, ld, speech and more)
phoebe (06/04/04 speech, complex partial epilepsy into generalized seizures)

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Dr FAHMIDA - posted on 03/13/2014

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I'm the most unfortunate and inhuman mother in the world who is watching my one and half year old only son going through idiopathic intratable simple partial seizure for last four months. He was in PICU for initial 2 months and in ventilator 2 times for status epilepticus, he was a healthy baby with no developmental delay, birth history normal, each and every investigations are normal. Now my room is mini PICU and my baby is receiving 7 AED maximum dose, including ketogenic diet but still seizure is on when awaken, he can't talk, stand, eat (need NGT feeding), I don't wanna live to see my son suffer, but what to do. Doc in Bangladesh don't know the cause and how to treat just say atypical case. Mailed for help a lot of places and persons but no one out there to respond to save my poor child, I beleave my son deserve to live healthy. Please almighty save my son. fahmida.amy@gmail.com

Laurie - posted on 11/16/2013

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I too have a 6 yr old son with seizures diagnosed w/epilepsy of unknown cause. He had his first one 2 weeks ago-a gran-mal that lasted at lease 25 min. Sooo very scary. We are on medicine now and have had 3 more seizures since then. He comes out of them rather slow and has trouble remembering things days later. Sometimes it is hard to focus at school. Not a problem before this. Some doctors tell me I don't need to call 911., that I will get used to this. Well I am not used to this. So very scary. I hope your little girl is doing better.

Blanca - posted on 02/26/2013

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My son has delay and I think is meds that are causing him that he takes many med and looking up on the side effect of it was everything he has..it sad because I can't just take his med..;(

Blanca - posted on 02/26/2013

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My son started having seizures at 6 month he started a high fever..and from then he started having different kind of seizures specially with fever those are call febrile seizures..he had few ear infection and pulmonary infection through he's first yr that cause him fever and many seizure he actually has more than one seizure time as he was growing up he got a little better he went from 20 seizures a day to 1 seizure a month to 1 seizure in 2 months so he got better..but unfortunately he has a delay..the thing the doctors can even tell me if it was cause due to many seizures or ear infection. He does Take many medication for seizures and ADHD too meds causes him to be hyper so he take med to keep him calm. Him being to hyper over heat him too due to lots of med that causes seizures too...my baby is now 10 yrs old and till today he has speech delay..motor skill delay. Mentally he's not at 10 yr old but he's able to do alot of thing in his own..and till today I still don't have answer to what he has all they say is he has epilepsy but never found why or what causing it..been to alot of hospitals due to his seizures being longer than 5 mins. Been to the children hospital they couldn't help me either to many more hospital and many neurologist and no answer.. Even a genetist doc to get some test done too maybe that will find something and no everything was normal..;(

Kimberlee - posted on 07/18/2012

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Yes this happened too my son when he was 1 1/2 years old. The doctor also told us that no answer is better then any answer. My son stopped breathing and was put into a coma. I was told his kidneys had shut down, which cause swelling too his brain, but they did not know why this happened. I was on the way to the doctors office for a walk in appt. Just before I got to the parking lot off the doctors office my son threw up after letting out this really loud cry that I did not think was ever going too end. As soon as he got sick his eyes went to one side.I did not know what a seizure looked like. I did not know what was going on. I was lucky too have him at the doctor that every moment. There was a hospital across the road from the doctors office. To see all these doctors scared for my child really made me think he was not going too be okay. He was airlifted to another hospital and he had so many test run on his and once again the doctor said no answer is the best answer and still to this day we do not know why this happened and we are always living in fear or it ever happening again. We were told he had a Tonic seizure. He was in the hospital for 4 days. Then we were sent home and when we went to his follow up all the doctors in the office were crying. They could not believe he did not have some kind of brain damage, they could not believe he made it through what they seen 1st hand. My sons doctor had been a doctor for 30 years and never seen or heard of a seizures last this long. This happened 2 years ago this week. There will always be questions. I know we are so blessed

Jennifer - posted on 05/10/2011

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I think that every parent of a child that has or has had a siezure knows exactly how you feel. I have a 4 year old daughter that has been having them her whole life, but we did not realize what was going on untill she was a year and a half when she had her first grand mal. Since then, we have been to so many appt. I cant even count, way to manyy tests, and nobody can tell me why my sweet little princess has this horrible condition. I now have a 2 1/2 year old son that also suffers from these nightmares, and if I could, i would take them away. but the doctors are still trying to get both of thier meds straight. for now at least, the wait of the wonder drug continues.

Lynne - posted on 05/02/2011

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27 years ago my son had his first seizure at the age of three 3. a week later he had another generalised seizure. The first one was thought to possibly be a feberile seizure but he hadn't had a fever. At the second seizure we were sent to Loma Linda University Hospital. So seizure medications were administered to him. Two weeks later my son, Justin began having absence seizures..a new medication was perscribed for the new type of seizure. This went on for about six monthgs with a new medication perscribed for each type of seizure. After 2 years of panicing, never knowing what we did that caused this, Justin had gained 6 different types of medication and no drug would take them away. All tests that were done showed no reason for him to have this disorder. The worst ones were his miaclonic drop seizures where his head would just slam to the ground, causing him to be injured with head wounds to black eyes with every school picture he took through his primary school years. By the end of 2 years of this stressfull situation we began realising that Justin was not developing mentally. He has been Stuck in the 3 year mantality ever since.....It was a very difficult thing to face and accept that Justin was not going to grow up to be normal. I searched high and low to get what ever help for him. The Ironic thing is that Justin is such a funny guy that anyone who meets him falls in love with his character. I was taught that God chose me to be his mom as I am a very strong, patient person. When Justin was 25 years old, it was suggested that he have a vagus nerve stimulator put in which send electrical impulses to his brain to control seisures. Once again it did not control his seizures but his memory came roaring back. I am glad he had this done even if it didn't take away his seizures. . Justin has Lenox Gastau syndrom which is just a name to put to the situation.

I don't regret any of my life....Justin is one of my prides and joy.

Also ironic is the fact that at the age of 17, my nephew had his first seizer and the first time he had an EEG it showed that he had epilepsy. Go figure! For the first time it seems we have a reason...hereditary.



Hopefully this gives yo some feeling that you are not alone. My Prayers go out to you.

Lynne Metzger from California

Stephanie - posted on 04/29/2011

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I know exactly how you feel, my son was diagnosed with generalised epilepsy one month ago. I am very new to this and sometimes it can feel like a different language. My son started having atonic seizures (drop attacks) and he has at least 20 a day, no he also has grand mal seizures, partial seizures, spasms and absence seizures. I really can't understand how a 3 year old can have so many different types of seizures so often after only 2 months. he has really hurt himself with dropping and frequently wet's himself, I need to with him constant to catch him when he does fall. He has had an MRI scan and that was fine but can't attach the electrobes for the EEG scan as he is to upset with it. He is on Sodium Valproate but we are not able to get all his medication into him every night. The doctors don't know what to say as they are baffeled, I hope things go better with you, please feel free to keep in touch, even if you are just frustrated abd want someone to moan with. xxx

Tara - posted on 04/27/2011

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I know exactly how you feel. My daughter had her first one 13 days before she turned a year old. It last for 1 hour and 45 minutes and they lost her twice. The doctors have no clue why she had the seizure to begin with. She is now 4 years old and still has them. After, 3 1/2 years they finally have diagnosed her with partial epilepsy. It is very frustrating when you dont know why your child is sick or what is wrong with them.

Christine - posted on 04/27/2011

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Also, with a history of prolonged seizures like that be sure to ask your Dr about having diastat on hand for him.

Christine - posted on 04/27/2011

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My daughter has generalized epilpesy with no know cause. She is almost 9 years old. Similar to your story one day out of the blue when she was 4 years old I kept her home from pre-k one day b/c she seemed tired... she took a little nap and when she woke from it she was not right... unresponsive and eventually went into a full grand mal seizure that lasted over 40 minutes. Scariest thing ever! I was not educated about seizures at all... I did not know what was happening. They hooked her up ato an EEG in the ER and told me that she had the potential to seize again at any time. They immediately started her on anticonvulsants.... she has done very well and goes long periods of time with out having clinical seizures. But anytime they hook her up to an EEG they see right away that she is almost constantly having sub-clinical seizure activity. We also have no family history of this.... her seizures have never been with fever... they have been when she is over tired or had not eaten well. She is also a beautiful, perfectly healthy girl in every other way... and while she never had any delays up until she started having seizures... since she was diagnosed she has had a lot of struggle in school... idk if its the meds or the fact that she has so much seizure activity going on that it makes it difficult for her to ficus and remember things. I wisdh you all the best with your son... hope the neurologist can get you some answers.

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