Just diagnosed

Nichole - posted on 01/12/2012 ( 15 moms have responded )

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Hello everyone,



My name is Nichole and my two almost three year old has just been diagnosed with a seizure disorder. She is having complex partial seizures. She is on Keppra twice a day. All of her MRI's and EEG's are normal. I am having a hard time processing all of this any help or suggestions would be appreciated. Thank you.



Nichole

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User - posted on 01/15/2012

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Hi Nichole

Our 5yr old daughter also has generalized complex partial seizures. She was diagnosed with Lennox-Gastaut last year because she also has tonic-clonic seizures and another cluster-like seizure that she has every single morning upon awakening. We all know exactly how you feel right now. Our daughter was only 5mos old when she was diagnosed with epilepsy and we've been fighting since. You're going to have to be your daughter's number one advocate. Ask questions, get second and third opinions. We also took our daughter to The Cleveland Clinic and I echo SK, they have the BEST pediatric epilepsy center in the country! I highly recommend you contact them and specifically request Dr. Ajay Gupta. He went above and beyond for our daughter and told us things about her brain that her neuro couldn't tell us here at home.



I know your daughter's neuro said her EEG was clean. I would recommend you ask for another EEG in a few months because an EEG can appear "clean" although it's clear that a child is having seizures. Sometimes if you don't request that your daughter have an EEG, the neuro won't bring it up. Next thing you know it's been almost a year since she's had one. Don't let that happen. Stay on top of it because complex partial seizures are known to "travel" in the brain. They may start on the the right side and end up on the left; or they could develope into generalized which means the seizures are all over the brain. Only a periodic EEG can tell you that. That's why a child with epilepsy shouldn't go so long without one. You can also request an MRI just to see if her seizures are causing any physical damage to her brain.



In the meantime, you may want to start your daughter on some supplements to help with brain funtion and nervous system function. Ones to consider are vitamin B6, magnesium and Omega 3 fatty acids (fish oils). Please talk with a natural healthcare specialist before you consider any of these. I don't know anything about Keppra but a lot of kids with epilepsy take it. I have read that it can effect a child's mood and behavior. Our daughter takes Depakote and Topomax but has been on Trileptal, Phenobarbital. If the Keppra doesn't seem to be effective, ask the neuro about Topamax as an add-on.

Take care and keep up posted on your lil sweetie's progress:-)

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Michelle A - posted on 06/24/2012

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They same with our Daughter. MRI and EEG are clean.
No reason but the seizures started after a fall when she was one. A normal fall that most kids take.
It was the worst thing to have to witness and it took several after that to get her to a Nero Doctor and to be out on meds. If it takes time to get the dosage right, dont panic. Once they know the magic number, things will be just fine.
We take meds, we dont ride on fair rides or swirley slides at the water park. Nothing else is different for My Girl.
Best of Luck to you and your Daughter.

Summer - posted on 06/18/2012

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Its hard for me to understand when I hear u moms in here talking abt meds already for ur kids maybe we are still backwards in Trinidad and Tobago, we were given the option to treat my son with Eplim and its on this same site I got help, we havent started no meds, my son was diagnose with Febrile Convulsion when he was 10 months old, and has had 13 attacks between 10 months and 2 1/2 yrs, this is for all the mom who think there is no hope there is, he hasn't had an attacked since then and he is going to school and having fun, swimming and now telling me he wants to play football and basketball, he is 3 yrs old, going on 4 in December, Prayers work wonders. He also sees a neurologist every 4 months, I know I am not out of the woods as yet since they told me it last till they are 6, but I am thanking God everyday for the small mercies and blessing.

Believe me there is HOPE.

Amanda - posted on 06/10/2012

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Hi Nichole, Would you please tell me what made you decide to take your child into the doctor and why a seizure disorder was the diagnosis? My son will be two this week and we just completed the 48 hour EEG. His MRI showed right temporal lobe sclerosis (patch of 6mm) and I am scared to death. My sons father thinks there is nothing wrong, even after I showed him a video of an "episode" and my family says that my son is normal. To me, it isnt normal. I am trying to find out as much info as i can. And Nichole, I am keeping you in my thoughts and prayers. I know how scary and hard this process is.

Alyson - posted on 03/01/2012

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Im happpy your daughter has finally gotten control with the trileptal. We started with that and it worked perfectly for almost a year. Now we are on the medication rollercoaster. We are currently titrating # 4. It is so frustrating, but you have given me hope in stating it took you 10 medications before you found one that works. My neurologist told me and I've read, as I'm sure you have, that once they fail on 2 medications they have a very small chance of responding to any. I have found this very difficult to accept and refuse to give up. I almost feel like her doctor has given up already. He suggested we admit her to the hospital for 5 day for 24 hour eeg monitoring after she failed the first two and was failing on the third. He announced this while we were in the ER right in front of her. Stating it would be a good idea to see if she is a candidate for surgery. He scared her (and me) so bad. It was awful. Your post has given me hope. Thank you.

Alyson - posted on 03/01/2012

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Im happpy your daughter has finally gotten control with the trileptal. We started with that and it worked perfectly for almost a year. Now we are on the medication rollercoaster. We are currently titrating # 4. It is so frustrating, but you have given me hope in stating it took you 10 medications before you found one that works. My neurologist told me and I've read, as I'm sure you have, that once they fail on 2 medications they have a very small chance of responding to any. I have found this very difficult to accept and refuse to give up. I almost feel like her doctor has given up already. He suggested we admit her to the hospital for 5 day for 24 hour eeg monitoring after she failed the first two and was failing on the third. He announced this while we were in the ER right in front of her. Stating it would be a good idea to see if she is a candidate for surgery. He scared her (and me) so bad. It was awful. Your post has given me hope. Thank you.

Alyson - posted on 03/01/2012

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I am sorry your daughter has been diagnosed with this horrible disease. My daughter was diagnosed in September 2010. She also has complex partial seizures. She turned 9 on Valentines Day. The day she was diagnosed she was put on Trileptal. It worked for almost a full year, but stopped working this past September. It has been a neverending nightmare ever since. She is on her 4th medication now (lamictal). We just started it two weeks ago. She is also on Topamax (which wasn't working, but he will keep her on it for the time being). I fear she has retractable epilepsy, but I am not ready to accept it yet. This is so awful and scary. Our lives have been turned upside down. I feel so alone. It kills me that my baby has to go through this. I live in constant fear every day. It kills me to see her going through this. I can barely stand to send her to school every day. I feel so alone...I can't even begin to imagine what she must feel like. I hate when people say "It could be worse, she could have cancer etc.". I think this is pretty bad. Maybe it's not cancer, but it can be life threatening and the unpredictablility of it makes it almost unbearable.I hope your daughter's seizures are able to be controlled by medication. Most are from what I've read. If you need to talk to someone please feel free to email me. I feel so alone, as I'm sure you must feel.

Shannon - posted on 01/27/2012

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My son caught a virus last April (2011)when he turned 11 months. As a result he acquired HHV6 encephalitis. Now we have been playing the medication game for 9 months. He now has myoclonic seizures all day long. He is currently on Keppra but has also been on Topamax, and Phenobarb. He is just starting Clobazam which is a med that we get from Canada. Unfortunately EEG's don't always show seizure activity as you probably already know. You may find it beneficial to join the epilepsyfoundation.org website. It's kind of like facebook but you have to apply to join and then when you're accepted you can ask LOTS of questions of other parents and also (which may be even more helpful) as questions of adults who have been epileptic their whole lives. It's nice to be able to ask them how medications affect them, and how their seizures feel since our children are too young to tell us. Good luck! Lots of info out there! My advice is keep reading and KEEP asking questions until you find what works for you!

Nichole - posted on 01/26/2012

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Her doctor has added the trileptal to the Keppra and that seems to be helping

Martha - posted on 01/25/2012

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Hi Nicole

Is she having seizures even though on keppra?

I have a 8 year old daughter that was on 10 different pills till we switched hospitals and they took her off all of them then tried trileptal 300 mg. of suspension ( which is liquid form) and that was the magic medicine. Have you tried that one yet?

Andreina - posted on 01/24/2012

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Hello Nichole, it is indeed a hard moment when you get the news, we have all been there. This community has been a heaven for me, full of supportive moms, lots of good advices and understanding parents that were walking same path. Never stop asking when you have doubts, never stop looking for help. My best wishes for you and your girl!

User - posted on 01/17/2012

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What were some of the symptoms that led to your daughters diagnosis, if you don't mind me asking...



Wendy

User - posted on 01/17/2012

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My daughter Courtney has regressive infantile autism, she was just diagnosed with conclusive partial seizures, what I understand of this, is that the seizure does not take full effect in the brain waves, it stops before becoming a full blown epileptic seizure. She is on Lamectil twice a day.. even on that medicine she does do quite a bit of eye flickering, and sometimes her eyes will get bloodshot.. Her EEG came back abnormal, but her MRI came back normal...from what the neurologist explained we are doing everything we can for her... Good Luck..



Wendy

Nichole - posted on 01/16/2012

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Thanks so much...Just to give some additional info Maddie was fine until Feb 2011 she was diagnosed with viral encephalitis. An infection of the brain caused by the H1N1 flu virus. We spent five days in PICU. We were told then we don't know what side effects would come of it....well we now know she has epilepsy with no known cause and all eeg's and mri's are normal...we have had a rough week and are now on 3mls of Keppra twice a day....

Prayersr to all

Nichole

S.K - posted on 01/13/2012

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I'm so sorry about your daughter...it's really hard to deal with Epilepsy. My son started seizing at 10 months old...his MRI was supposedly clean and it wasn't. We didn't find out for 1 1/2 years later! We decided to fly across the country to the best Epilepsy Unit (the Cleveland Clinic) and in 24 hrs they found his malformation/cortical dysplasia. He went from 150+ seizures a day to none as of September 2011. He had surgery at the Cleveland Clinic. The drs there are AMAZING and really listened to us. I can't say enough good things about them. We found out about that hospital from someone else who child had a misdiagnosis of a "clean MRI" by 2 hospitals...their 2 year old has been seizure free for 1 year now! My advice is to NOT give up and if a dr says something that you don't agree with don't give up and keep pushing! You are already doing great joining a group and educating your self! You can read the read of my son's story on his blog or if you want more info on the hospital it is on his blog as well :) www.beatingepilepsy.blogspot.com



One more thing, "regular children's hospitals" can deal with uncomplicated epilepsy. but when it's complicated...I would look into an actual "Epileptic Unit Hospital" that specializes in epilepsy :)



Can I ask, how was she diagnosed with a seizure disorder if her EEG was clean?



Good luck and let me know if you have any other questions!

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