Hi, my daughter had a seizure back on November. Her back arched her eyes glazed over and she was making a strange repetitive sound this went on for about 10 min then she went limp and started twitching on her left side. First just her cheek but then her whole...
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Take control of your epilepsy and seizures. Seizure management has never been easier.
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 Kaboom New - Anyone with a similar story?
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msmall02 New - Diet and Development... Could a poor diet trigger seizures? Can ...
My 5 year old has refused to eat breakfast for the past 3 years. He would make himself vomit if he was forced to eat a healthy breakfast ( pancakes, cereal, toast, eggs,bacon, etc..) and lunch and dinner.But on the upside he will eat a salad...
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 Angeli... New - Chewing, sign of seizure?
A couple of days ago my 3 year old (that has had at least 2 seizures that we've witnessed) was on the couch for "quiet time." I was in my older son's room talking to him about his day at school (a few minutes at the most). When we came out of the room it was...
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Mom of... |
Bills_Mom New - Absence Epilepsy
Hello, I am new here and just NEED to write something in order to let out my frustrations with people that have been there and done that; sometimes I think people just don't want to hear it anymore and our doctor(s) just don't know what to do anymore. Yes...
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calueck New - BRE-how do you know they have outgrown the seizures?
Hi -
I have an 8 year old daughter who was diagnosed with Benign Rolandic Epilepsy in January 2009. Its almost been a year since she has had a seizure.
Does that possibly mean she has outgrown the diagnosis? I know the neurologist said she...
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mikean... New - Zarontin and NO Absence seizures???
My nearly 8 year old has had absence seizures since December. She is now up to 2 teaspoons of Zarontin with little side effect (some tiredness at night). BUT she is still having 1-2 absence seizures. So here's the question.... I'm thinking the goal is...
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echo New - Children with Benign Rolandic Epilepsy (BRE) and problems with l...
I am interested in sharing information and stories with other parents whose children have (or had BRE) and have experienced learning or attention problems at school.
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Cboysmom |
 admin |
EchoRains Looking for support, undiagnosed. My 3 year old is having seizures.
I know many of you have been diagnosed or have had children diagnosed. I'm here mainly looking for support.
Here is my story.
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 ruthcp... Trying to figure out new seizures in daugther (4years old)
Hi there,
I am new here, my name is Ruth and my daughter is Faith. She is 4 years old and has been diagnosed with epilepsy since she was 1. She also has an acquired brain injury from birth and many developmental delays and autistic tendencies......
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 Little... Juvenile myoclonic epilepsy and behavior/mood problems
Hi, my son is recently diagnosed with and being treated for Juvenile Myoclonic Epilepsy. He has started on Depakote ERIC three weeks ago. The seizures cause some problems with depression. Also the seizures are not under complete control yet we are still working...
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 caandahl advise please..I dont know what to do./autism and night seizures
Hi people,
My son is 9 and was dx'd w/"severe
autism"(non-verbal),DD,hypotonia,"MR",SPD etc etc when he was 2.He was
dx'd w/type 1 diabetes about a year ago.
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kzumsteg Help! Not sure where to turn
First let me apologize, this may be a long post. My 8 year old son was diagnosed with complex partial seizures last July. His seizures are more staring episodes, but they are not the absence siezures. We never would have noticed them if not for the school...
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megnn286 EEG Abnormal Results
Hello all, about 3 months ago my 4 year
old experienced a partial seizure on the right side of his body. His arm and
leg stiffened up and he could not move it for a couple of seconds. He has 2 EEG
done and bother of the results were abnormal in the...
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murray780 Cortical Dysplasia Surgery
I am looking for any advice from parents who have children that have gone trought epilepsy surgery. My eight year old daughter was diagnosed with epilepsy four years ago. She continues to have daily seizures while on four medications and has failed multiple...
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 Baby Sam Clobazam
I was wondering if anyone has tried Clobazam. If so, what are your experiences with the drug? We are going to start this next week.
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Kes |
 Jessie S school bus calls 911 in non-emergencies--we're just the parents a...
How to stop unnecessary 911 calls by the school bus company? My 18 year old daughter goes to a special ed school approx 40 miles from home and is transported there every day by van. Although her CPS began a few years ago, her first one on the van was in January....
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 Zebulo... A Mom of a 6 year old that was dignosed last year and we are expe...
Ok this is my first time on this website and I need some help on what I should feel and do about some situations that have came up with my son. I may ramble but i just want some help.
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mwilso... Gelastic (laughing) seizures
Hi all,
My 3-year-old daughter was diagnosed with epilepsy at three months of age, along with diagnoses of Septo-Optic Dysplasia, hypothalamic dysfunction and paroxysmal autonomic instability.
She has had several types of seizures,...
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Lumen |
 pmgsmom Seizures & The Effects of Season Change & Daylight Savings Time
My son was diagnosed two years ago with epilepsy. He is now 8 years old. I was wondering if anyone else has experienced the seizures to be brought on by change of season or with daylight savings time. My son has had two grand mal...
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 lisabdcat Discouraged
My 18 year old daughter was put on an experimental trial of natural progesterone because her seizures frequently followed her menstral cycle. She has intractable generalized E and has grand mals frequently. She is also on topamax,...
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lrs1407 Trileptal or puberty?
I am brand new here. My 11-yr-old daughter was diagnosed approx 6 mos ago with partial complex seizures. She's always had a temper, but this morning was a nightmare and I'm starting to suspect it's the meds.
Major symptoms:
Mood swings
Trouble...
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 thomas... cant take any more need help for my son PLEASE
my son started doing sreames at night would get flush goosebumps eather go on himself or have bad gas and would have suden epesodes of vomiting.He will do this every 1-2 mon. it is now getting worse when it last for many hr. off and on he has gotten a fever...
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 ekoorb Panayiotopolous Syndrome/Benign Occipital Epilepsy
My 5 year old was recently diagnosed with Panayiotopolous Syndrom/Benign Occipital Epilepsy. For anyone else with the same diagnosis, have your seizures ever appeared during the day? My daughter's have only surfaced during the night...
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sleepy |
 mamajess allergies and seizures
I was wondering if anyone else has noticed a link between their child's seizure activity and allergy season. We went quading along the alphalpha feilds the other day and my son's eyes totally swelled up into jelly balls. He was so...
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jannob Suspected Seizures in Infant with Achondroplasia
Hi, my name is Tonya and my son, Knoah is 4 months old and we suspect he is having seizures. He was just a few weeks old when we noticed staring episodes. Then at 7 weeks old, I awoke to him to him extremely pale, turing blue, staring....
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purple... |
 munkey07 Does anyone know? Information needed.
Can anyone help me with any resources or information that I can receive/access whilst waiting for doctors and referrals? My son had complex partial seizures when he was younger. He is now four. He could do things that he now has alot of trouble doing. He could...
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rainkinz |
doncar 21mth old with suspected Absence seizures
Hello
My 21mth old son is to have an eeg on wednesday as he is having suspected absence seizures he had a nap this afternoon and woke 15minutes into sleep screaming his cry was then like he was in pain I took videos his left big toe hyperextended and left...
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dwayne... |
flutte... |
munkey07 |
lesevo... 12 year old with complex febrile seizures
I have searched everywhere trying to find any parent that has had a child with febrile seizures over the age that most children outgrow them....to no avail. My son has had complex febrile seizures since he was 13 months old, he is now 12 and half years old.
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 slapfo... 10 year old w/BRE started sleeping with eyes open--anyone know if...
hi, my son is ten and has had bre for two years, pretty well controlled on zonegran. the past two nights, he's started sleeping with his eyes open and has seemed kind of clammy. could this be related to his epilepsy? has anyone experienced this?? please advise. thanks.
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ambrba... |
shani973 son with BRE wetting bed
I have a 6 yr old son who has BRE..has has started wetting the bed at night and i am worried this might be a sign of him having seizure..he has never wet the bed before and has been potty trained since the age of 2..thoughts???
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sahm1223 Childhood absence epilepsy
My 5 1/2 year old daughter was just diagnosed with childhood absence epilepsy. I had never heard of this condition before so I am trying to do as much research as I can, but that can become overwhelming. I have so many fears. Will my daughter respond well...
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 Jess_sMom |
 paigeg |
 RorysM... vaccines cause epilepsy?
Epilepsy & vaccination
In 1998, federal public health officials at the National Vaccine Injury Compensation Program, Public Health Service (Pediatrics; March 1998) found that a causal relationship exists between live measles vaccine...
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 seizet... |
LDIEGU... |
melwal3 New, nervous and ?? about meds for daughter....
Hi I am new to all of this and am very cofused with seizures. My 4.5 was just diagnosed yesterday after her VEEG and was started on Keppra. He said that she has generalized seizures. Not really sure what that means? She zones out a lot, and when...
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 jolieweng Grow out of seizures???
Hey, have you other parents out there heard that your child could grow out of their seizure disorder? My Zakry has idiopathic epi, so does that mean that he should be able to grow out of it? We are running one more metabolic test,...
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 Tommysmom Infantile Spasms
My son Tommy was diagnosed with Infantile spasms at 5 months old. We noticed "twitches" that our pediatrician told us may be primal reflexes. After a few more days of seeing my son having "jack knife" seizures where his head would...
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 macsmom Absence Seizures ??????
My daughter (9) was just recently diagnosised with absence seizures and has started taking Lamictal. Everyone I talk to looks at me like I am crazy, and has no idea what I am talking about. Just looking for someone else who might...
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 lisavm... Temporal Lobe Epilepsy - Simple partial Seizures
Hi,
I'm new to this, my son (10years old) was diagnosed with temporal lobe epilepsy last week, i believe he has simple partial seizures although the doctor did not go into this. For the past year or so he has experienced episodes...
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 rhettr Benign Rolandic Epilepsy and chronic bed wetting
My 8 year old son was diagnosed with benign Rolandic epilepsy last year after 2 separate seizures during the early morning hours about a year a part. He recently had another, about nine months after the last one.
He is also a...
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dhemphill What are the odd? A Trileptol question...
My son is currently on 7 ml twice daily of Trileptol. We use the syringe that comes with the bottle and rinse it after every use. My son has had several seizures in the last week which is very unusual. My wife had a thought that...
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 mamato... post seizure Vomiting
Hello...I am new to this site...my son may have petite mal seizures....since finding out that this may be true, we have been noticing a few things recently....the one I have that is most standing out is Vomiting....when sleeping he...
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 jmom Benign Rolandic Seizures
My son is 10 yrs old and was diagnosed with BRE in January. He had 2 seizures, had a neg. MRI. EEG showed BRE. I understand that most outgrow this? Anyone else have it, or did and outgrow it?
He is on keppra and has not had a seizure...
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 SandiUH Lennox Gastaut?
Hi ... I'm searching for answers -- like we all are -- and finding none that satisfy the need to know. I guess It's the answer to "WHY" I'm still searching for. I'm finding it frustrating finding answers and even "what to expect"...
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 Amanda... Scottish Rites Atlanta- 15 yo son for work up--HELP!!! Distressed Mom
My son is 15 and has had "febrile seizures" since 10 months. Up until last year, maybe once a year with acute fever. More often as a baby as all the childhood illness usually have fevers. Now we are seizing around once a week and...
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JenCA Seizures connected with behavior issues?
Hi,
I'm new here and still working with a preliminary diagnosis for my 6yo son. His neurologist says he's having complex partial seizures and we're scheduled for an EEG tomorrow, and an MRI at a future time pending clearance from...
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 Brubah... Consistent Newborn Twitching
I need some help/input.
My 2 week old son has been twitching at least once or twice a day for the last week or so. He does it while sleeping or awake. Usually it's just his limbs but today I noticed his tongue coming in and out...
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wmott1122 Seizure Protocol at school
Does anyone here have a teen who has tonic clonic seizures and therefore requires Diastat at school? If so, do you have a seizure protocol/plan of action on when and how to use it at school, and when and if to call an ambulance? ...
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tesmar... Continual hand twitching (slow) in teen with generalized epilepsy
Am wondering if anyone had seen continual hand twitching (right hand, last two fingers, slow movements)? Teen was recently diagnosed with generalized epilepsy and has just started on lamictal. Neurologist seems stumped by the hand...
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 schuffert 7 month old with unknown seizure disorder
Hi, I am looking for any advice out there. My 7 month old daughter had a full body seizure approx 1 month ago. She was taken to the children's hospital via ambulance. The seizure lasted for 19 mins, valium was given to stop it....
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momyo2ac Absence seizures and wetting pants anyone else experience this?
my 7 year old daughter has been diagnosed w/absence seizures for almost a year now. She recently has been wetting her pants. Has anyone had this same experience? He has never had this problem but in the last month sha has done it 3...
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esquiv... Breakthrough Seizures
Are breakthrough seizures a normal part of epilepsy or is it a sign that the medication is not right?
Sheila...
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 mar96 My 10-year-old daughter with epilepsy
I am new here. My daughter had her first seizure at 6 yrs. She had a grand mal or tonic-clonic seizure. Seven months later she had another seizure and then was started on Clobazam. She was on Clobazam for about 6 months, but then...
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mcdonaja Epilepsy. Is it or isn't it????
Here is our story/frustration at having our son properly diagnosed.
Winter of 2000 - Child male age 5 - No seizure history. Healthy Happy. Oldest of 4 children. No family history on either side of seizures, epilepsy, or any other...
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 sydylo 1 mo old baby with seizures
Hello. My one month old baby is in the hospital with seizures, he was having them with body movement at home, jerking head back, knees up, arching back. He was admitted into the hospital and put on phenybarbitol, which controlled body...
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 sugarsue I can't believe I'm here, but I am (Absence Seizures)
My daughter has just been diagnosed with something, I don't know for sure yet but assume it's absence seizures. She's 4.5 yrs old.
Right after diagnosis on Friday the neurologist went on vacation so I won't hear the actual term...
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JBishop 3 month old with seizures
I am new to the website and have really learned a lot in just a few days.
My daughter is 3 months old and was recently diagnoised with a seizure disorder. She has been having 8-15 grand mal seizures a day. We are currently on...
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upanama Keppra for kids
Hello,
Very new 2 this, doctors want to put my 6yr old son on Keppra, anyone using this on their children?
Thanks
upanama...
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 d00r Absence Seizure...What does it feel like?
Hi all,
My 3-1/2 year old has frequent absence seizures a day. However, she is too young to tell me what she is feeling before (and if possible during) the seizure. That is if she feels anything, or maybe it's the "memory loss"...
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scaredmom my daughter and school
i have a few concerns with the school my 6 year old goes to.she developed epilepsy a year ago and we have now started treating it about a month and ahalf ago.Anyways when i told the teacher about it she acted like she was scared and...
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 mama bear Anyone been through kid having lumbar puncture? (spinal tap)
Hi I am brand new first week of E with my 2 1/2 yo son. He is scheduled to have a Lumbar Puncture when he gets his MRI and additional blood tests in 2 months. All research I am doing does not link this test to epilepsy. I understand...
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msmall02 Could a poor diet trigger seizures? Can seizures disrupt child s...
My 5 year old has refused to eat breakfast for the past 3 years. He would make himself vomit if he was forced to eat a healthy breakfast ( pancakes, cereal, toast, eggs,bacon, etc..) and lunch and dinner.But on the upside he will eat a salad...
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 Jessica3 |
paigeg |
 caregi... HELP! Desperate for answers...Could my 15 yr old actually be hav...
Hello all! Im so desperate for input please help me. Sorry that this is long but I want to write all the details so maybe someone can help us.
Im really going thru a tough time with my 15 1/2 year old daughter right now. Not only does my husband (her...
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caregi... HELP! Desperate for answers...Could my 15 yr old actually be hav...
Hello all! Im so desperate for input please help me. Sorry that this is long but I want to write all the details so maybe someone can help us.
Im really going thru a tough time with my 15 1/2 year old daughter right now. Not only does my husband (her...
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caregi... HELP! Desperate for answers...Could my 15 yr old actually be hav...
Hello all! Im so desperate for input please help me. Sorry that this is long but I want to write all the details so maybe someone can help us.
Im really going thru a tough time with my 15 1/2 year old daughter right now. Not only does my husband (her...
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longni... Long Term Success With Fish Oil or Omega3 ?
I've read some short term testimonies, but has anyone had longer term success with fish oil/omega3 supplements?
What sort of seizures have responded?
Thanks. LN
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linda ... 'Epilepsy Scotland' open day!
This might be of interest to those of you in/near Glasgow. Epilepsy Scotland, Govan, Glasgow have an open day on Thursday 26th October, 5pm till 8pm....
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sydylo 1 mo old baby with seizures
Hello. My one month old baby is in the hospital with seizures, he was having them with body movement at home, jerking head back, knees up, arching back. He was admitted into the hospital and put on phenybarbitol, which controlled body...
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tricia... 1 year old with SCN1A variation
My 1 year old has tested positive for a varition of the SCN1A gene, he started having seizures when he was one day old. His seizures are currently controlled with Trileptal, Topomax, and Keppra. So far he's not had one for three months. He has fine...
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 meliss... 10 Mo old Seizures Sleep Only
My son was diagnosed with epilepsy at 4 months after a 4 hr EEG. He has partial seizures only in his sleep. His hands and legs jerk slightly and those are the only signs. He is on both Trileptal and Keppra and the amount of slight...
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homaira 10 month old crying frantically during seizures
hello...my daughter is 10 months old and is on seizures since she was born.plus she has cerebral palsy.i dont know whats the type of her seizures but she cries alot during her seizures.can someone tell me what type of fits kids cry in.she takes milk through...
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Lisaren 10 month old with Infantile Spasms
My daughter Kali is 10 months old and was diagnosed with Infantile Spasms in November 2006. We have been on several medicines-ACTH (currently on 2nd round of ACTH) Topamax (currently on 2 try of this) Zonegran, Phenobarb, Keppra (still...
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Riversmom 10 month old with seizures lasting over an hour
Hi, my son's first seizure began with his left arm, spread to his left leg,
and then full body. It lasted about an hour. We were in a remote area,
so it took over an hour to get to a hospital. His second seizure was
the same day as his 6 months vaccines,...
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 momschool 10 year old son with possible seizures
Hi,
I am so happy to find this board!!
I am very confused about my son. A few weeks ago he started seeing spots coming at him as he describes it,he then falls down when they completely cover his vision. He also has many more...
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slapfo... 10 year old w/BRE started sleeping with eyes open--anyone know if...
hi, my son is ten and has had bre for two years, pretty well controlled on zonegran. the past two nights, he's started sleeping with his eyes open and has seemed kind of clammy. could this be related to his epilepsy? has anyone experienced this?? please advise. thanks.
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Gracie... 11 mon old with myoclonic & atonic, scared and need advise
I am new to this site. My 11 month old, Gracie has myoclonic and atonic seizures. She was diagnosed with myoclonic in January, treated with Kepra which stopped the myoclonic episodes but then the "head drop" seizures became more prevelant....
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schick1 |
 yock6548 |
yock6548 |
 sheilat 11 y.o. son with complex partials of left temporal lobe....2-6 ti...
Can anyone relate or share their story regarding complex partials of left temporal lobe, that is uncontrolled? What is it like? What can I do to further help my son? Meds (Keppra) is not working, tests come back as normal except for 1 EEG which is...
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lesevo... 12 year old with complex febrile seizures
I have searched everywhere trying to find any parent that has had a child with febrile seizures over the age that most children outgrow them....to no avail. My son has had complex febrile seizures since he was 13 months old, he is now 12 and half years old.
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 cbrown... 12 yr old son with BRE and very scared
My 12 yr old son was diagnosed with BRE 3 1/2 years ago. His EEG came out normal, but his symptons were classic for BRE. He had infrequent and mild sezuires (one side of his face would twitch, his mouth would open and close, he would...
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Gecko 13 mon old newly diagnosed and feeling overwhelmed. What caused this?
My 13 mon old son has had 5 tonic clonic seizures in the past 3 weeks. The first 2 were in one day. 2 weeks later he had another 2 in one day then one the next. He's had an EEG and MRI, both normal. A pediatric nurolologist has diagnosed him with...
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stylzz 13 month old...what's going on?
I'm started to get very scared.At first I thought it was going to all go away but now I just don't know.It started when he was 4 months old,the same day as his second round of shots.He had a seizure that night.The Dr.s had no explanation...
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