Any other moms out there with babies with epilipsy?

Salema - posted on 06/17/2009

hi it can help having other people to talk too, my son started having fits at 10 days old,he is now 8yrs old but he still does'nt understand anythink thats going on around him,he does'nt walk,talk or do anythink,but i've learnt to cope,its hard sometimes,and it hurts seeing him like this,but i take each day as it comes,and hope for the best,thanx 2 having other people 2 talk too.

Jo - posted on 06/17/2009

Hi we have a 18mth old son who has been having seizures since he was a couple of weeks old. The doctors we see havent confirmed what has caused it but we think its to do with his traumatic birth. The siezures stopped and then had to go through him having reflux. In the middle of April last year the seizures came back, this is when the doctors decided to start him on Carbamazepine. We have had the EEG, MRI, Catscans done and have been found all fine. We then had a few trips to the hospital with stays in over night this happened in June, July and August last year. He has since been given Pyridoxine, Clonazepam, Phenobarbitone and finally Lamotrigine. We finally found that Phenobarbitone was the one that was working but it also caused delays in his development. He still cant sit up by himself, crawl, walk etc. We are in the process of taking him off all his meds except one. We are down to reducing the Phenobarbitone and finally having just the lamotrigine. The last time we spent time in hospital was the end of August. His seizures have changed right from the beginning when he first started. Now he just holds his breathe, his chin starts twitching and sometimes his legs will go stiff. At first it was really scary but now we know when he has one and they only last about 5 to 10 sec long. We have been basically seizure free since the middle of january and its been good. We are hoping that he will grow out of it but if not we will have to deal with it. We see a local pediatrition every six weeks plus one from out of town twice yearly. They have now told us they dont expect him to walk or talk but we think he will and he has therapy for this. I had a perfect pregnancy and never thought this could happen to us but things happen that are beyond your control. Now I live one day at a time and think positive every day even if he has a bad cold at the moment and very grumpy and crying lots. You still have to put up with the normal child illnesses. I have lots of support from my family but this is the first time I have talked about it to others through a website etc.

Amanda - posted on 06/15/2009

well my osn is getting an MRI on july 31st to confirm epilepsy but at 3 months old he had a seizure he just tense in my arms his eyes went wide and he started jerking. that day he had two one with just me and one the nurse at the hospital saw. he stopped for a while and started again at 6-7 months he's 13 months now and has been on meds since he was 8 months old and had his EEG which showed abnormalities. the nurologist told me she wants to keep him on it until he goes a whole year on it siezure free. i just try and enjoy him as much as possible! i also reminded my self of how lucky i am that he doesn't have something MUCH worse! a few months back the doctor thought he may have type one diabetes... that terrified me... i just remind myself now that he just has to take one pill a day and he'll most likely grow out of it. i take the veiw that there are so many other things that could be so much worse for him... and what good am i doing him by being negative and saying woe is me all the time?. stay positive for your little girl.

Alice - posted on 05/27/2009

Hi Amanda! Just reading your question here brought tears to my eyes. My daughter was diagnosed at the age of 3 months. THE SCARIEST feeling I have ever felt. My daughter has been seizure free for over 4 months now. Which is a RECORD for us. I wont keep you long but if you want to email me or just chat one one one. I will help you as much as possible. If your interested in my story I will tell you all about it. It brings tears to my eyes but I have hope that one day she will be seizure free for the rest of her life. IT DOESN'T AFFECT ONLY HER BUT ME ASWELL. June 2009 will be her 2 year anniversary..I keep my fingers crossed and keep her close to GOD and keep praying that she will outgrow it. I am just wondering has your daughter had any developmental delays over this. What kind of seizures was she diagnosed with? To me it sounds like she has two types. Also what kind of medicine does she take? The reason why I ask is because my daughter has delays, certain medicine caused her to have more siezures and it is possible to be diagnosed with more than one type of seizures. You are so young to be going through this, not saying it is easier when your older. I feel for you. are you doing this alone?

Salema - posted on 05/27/2009

hi crystal how old is ur son ,and wot medication is he on,my son was 10 days old i took him 2 the DRS and he sent me home and said if he's still havin the shakes in a wk bring him back,when the midwife came out and seen him and i told her wot the doc said she was annoyed,and sent me straight 2 heartlands,where he stayed 4 10days till he was diagnosed as epileptic,i didn't count on him ending up severely disabled.i hope ur son doesn't end up with all the problems my son has.

Amy - posted on 05/27/2009

hi there my daughter started doin fits at around 2months old the docters said she had coilc but the fits contiued i had to take her docters around 20 times before the did anything she had an eeg and a mri scan she was diagnosed with infantile spasums and later with tubularsclorosis whitch is the cause of my daughters epilepsy she still dose around 50 fits daily and sleeps very rairly she is on 2 diffrent types of medication to control them and sees a specalist every three months dont know what advice i could give u and i know it sounds strang but u do get used to it

Salema - posted on 05/24/2009

well i'm happy that every-1s children are doing well.i just wish i had the faith that all of you nice people have,people say have faith in god ,have faith in doctors but i don't think i can anymore,8yrs on and not much improvement in my sons condition,he had tests galore,he's probabley had every test going.its like he ages 1month every 2yrs.its really hard,i have read all the letters on here but no-1 seems 2 be in the same situation as me ,is there any-1 out there who's child had epilepsy at a very young age,who has ended up with global development delay,and are ageing at avery slow pace,i just need some-1 who is going through the same,or has gone through the same just 2 give me some hope,i really feel alone in this world,no-body seems 2 understand,people have given good advice,but their children have'nt ended up partlally brain damaged.i'm on facebook.salemaedgington@fsmail.net.if you'de like 2 chat more,and are haveing similar problems...? xx

Melissa - posted on 05/23/2009

my daughter started having grand mal seizures at 2 months old she was diagnosed with epilepsy after a ton of test when she was 3 months she will be on Keppra for a while they have hopes that she wont have to have any brain surgerys we can only pray taht the meds will be enough

Crystal - posted on 05/20/2009

My son has the same seizures he started having them the day after he was born. Heres my e-mail Crystal_jones_24@yahoo.com

Salema - posted on 05/18/2009

i found vigabatrin a miracle,my son had tried about 5 or 6 other meds before vigabatrin and its the only one that stopped his seizures.

Salema - posted on 05/18/2009

ask the doctor for vigabatrin,my son started having his seizures when he was 10 days old,he is now 8yrs old but it is too late for my son now the damage is done,he is now partley brain damaged,he used too shake at first,then he had aseizure that lasted nearly a whole day,his eyes went too one side.i didn't even know he was fitting.he wasn't given vigabatrin till 3 months after he had the fits,its the only medication that controlled the seizures,if he'd had it sooner,i don't think he'd be severely disabled now.?

Keely - posted on 05/17/2009

My son was 20 months when he had his first grand mal seizure. After the barrage of tests, CT, MRI, EEG, blood etc he was diagnosed as epileptic. He's been on Keppra since and it is doing ok. Was noticing him having more partial seizures when he needed an increase in meds due to growth. He does go in for repeat MRI's due to an arachnoid cyst that may be causing compression.

His pedi neurologist also said he'll likely outgrow this. He said around 4 years we'll start weaning him from the meds and see what happens...... not looking forward to that.



Honestly i'm glad i found this group. It's hard to talk to people who don't understand and who haven't been there.

Sarah - posted on 05/14/2009

my son son had seizures after he was born and spent first six months of his life on phenobarbitone. then at 11 he had a seizure out of the blue . he can have seizure anytime without notice, my advice is always carry medication with you and have spare sets . let your child carry on life and you just have to be aware

Pam - posted on 05/12/2009

I have a 21 year old daughter with Seizure disorder. I know what you are going through. Lisa started having what looked like muscle spasms in her left arm when she was 3 weeks old. I took her to a neurologist on my pediatricians advice. He put her on Phenobarbitol. This stopped her seizures and when she turned 1 year old I weaned her off the medication. She had no more seizures until she turned 3 years old. As time passed the seizures which were partial complex, became more frequent, he Dr. did tests and she had scattered brain malformities and was not a subject for surgery. Over the years she took various medications in an effort to stop the activity. Nothing worked for very long. At 12 years she had a VNI inserted under her left breast and an ugly scar on her neck where the leads were attached to her vegal nerve. He Dr. swore it helped, I saw no reduction in her seizures. She would go for short periods of time without any and then her behavior would become abominable and the seizures would start once again. She was like a pressure cooker, fine for a while then boom! At 15 she went in for replacement of the VNI (batteries last 5 years) for a smaller unit. It was replaced and she was home recovering when her neck (which was not involved in the surgery) swelled up like a balloon. She had a staff infection that traveled up the wires from her breast to her neck. Everything was removed. Her Dr. wanted to try more medications. I was frustrated. She had no life other then school where she was in special ed for behavior disorder which is common with the anti-seizure drugs. I started hunting on the internet for help and found that the Medical College of Georgia did epilepsy research. I made an appointment and drove 4 hours (from Atlanta) to Augusta. Lisa had just turned 16. Three months later she was in surgery. She had a partial lobectomy. It seems the scattered damage had grown together over time and formed lesions that could be removed. Her Atlanta Dr. never did an MRI after the first one at 3 yrs old. She was left with less feeling on her left side and has some trouble controlling her left ankle, she limps and forgets to use her left arm, she can use it fine, just forgets it's there. Lisa had a few more seizures after the surgery which was disappointing, but we noticed they were clustered around her periods. I took her to a gyn and she recommended an IUD that had homone in it. She only has seizures now if she gets overheated. The last one was at a picnic last August. All the seisure activity has left her with a low IQ and she is very immature. She is still on Lamictal and Lyrica, which are both expensive. She has been rejected for SSI and I will need to file for her once again. I keep hoping to make her as independent at possible. Still very hopeful.

Kylie - posted on 05/01/2009

Hi, My daughter was diagnosed with epilepsy at the age of one. At one stage there she was having 10 seizures a day when she was in hostipal . The doctors were trying out different medication to see which one would control the seizures. she first started with 3 lots of medications three times a day. Then her doctors wanted her to be reduced down to one medication

we had one seizure outbreak and had to put her meds up and try to start again reducing in 2wks we did that and we had no outbreaks. My daughter is 5 now and all is going well she is on epilim and on another drug called Lamotrigite. The effect with these meds she has alot of temors where she shakes alot. I watch out and know when she is going to have a seizure and i'm always aware and i have taught my other children what to do when she has one.

Latasha - posted on 04/29/2009

The first thing I can tell you is that you must always know and understand that God doesn't make any mistakes. You must keep yourself prayed up at all times. My daughter is 7 yrs old and she was not supposed to make it through the night, but with the prayers of everyone I know, she is still here. She has been seizure free for about 2yrs now and it is wonderful. If you ever need someone to talk to you can always lean on me. God Bless You.

Dana - posted on 04/29/2009

I have two daughters with Epilepsy and had it myself as a child. My older daughter was diagnosed at 3 mths and my baby at 4 mths. My older daughter has now outgrown her seizures for the most part. She occasionally has staring episodes when she's extremely tired or a petite mal seizure (last one was over a year ago) when she is exhausted, but she no longer requires medication, only monitering and sticking to a routine schedule.



When she started her seizure, of course I was upset and called my family. My brother made me feel much better by telling me "we made it through this one time already with you... it'll be no problem to go through it again... she'll be fine... just have faith". He was very right. :)



Now our baby has E and she's made it through her first year. I'm praying every day that she will outgrow it too.



All I can say is just don't give up. Stay happy ad positive for your child, not just yourself... enjoy every minute with her just like you would had this never been a part of your lives.

Kate - posted on 04/28/2009

hay, my son would get upset and clingy then he would go blue, lose muscle control, and his eyes would roll, after this he would go to sleep this all happened at the age of 9 months, we spent a week in hospital having every test known to man, his heart, ecg, eeg, blood tests, mri cat scanes but nothing showed, ( your child has to be having a sezier during the eeg for it to show anything) we went home then a day later it happened again we when back to the hospital and they sent us home with no explanation then my son had 5 seziers in 2 days and as horrible as it sounds I filmed one to show the pediatrician, my son had another eeg (that showed nothing) and was eventually put on tegretol, which was fine to begin with but we have had alot of behavioral issues and excessive tiredness along the way I have argued with doctors and demanded referrals (sometimes they just do not want to listen) I have also taken my son to the peds office when he was having an outburst to show him what this medication has done to my beautiful babe, my son has been seizure free for 2 years and he is now slowly being weened off his medication (fingers crossed) and so far so good as the docs had hope he would grow out of it and I have been using natural therapies in conjunction with his medication in the way of magnesium and eflex (brand of fish oil tablets) and I am slowly getting my placid little mate back, I swear by the eflex though it is being used for all sorts of neurological disorders with great successes of course it has not cured him but he is alot better at concentrating, copes better at care and is more affectionate, so for a little positive we are almost off the meds and down from 10ml to 5 ml a day so all hope is not lost fingers crossed and I pray all the time but we will see in the next 5 months

Carolyn - posted on 04/26/2009

I have a just-turning-three-year-old who was diagnosed with Infantile Spasms at 7 months. She's currently on valproic acid and nitrazipam and hasn't had a seizure now for a year since starting the current medication regiment.
They told me that most kids have a global 50/50 chance of outgrowing an infantile seizure disorder, with kids having an idiopathic disorder (meaning no known cause) more likely to outgrow them. They will generally stop by the time they start school. About 1/2 the kids that stop seizuring will resume having seizures later in life, usually in their teens.
It's scary and frustrating, but in most cases, it's manageable. Most people ask me, "You must be so scared when they have a seizure?" But really, you get used to it. It becomes part of who they are, just like diabetes would.
The best advice I ever got about having a kid with epilepsy is to make sure you are your child's advocate. They cannot speak for themselves, so you must speak for them. You must push, shove, be a bully at times, and carry a big stick when necessary to get answers.
I'm never sure whether or not it's a good thing when I meet a new doctor and they say, "Oh yes, you're a patient of Dr. X. We've been briefed about Abigail."

Jennifer - posted on 04/24/2009

My son is now 11 weeks old and has was diagnosed at 6 weeks with partial seizures. He is alert, then goes limp, eyes go up and move around, he is unresponsive and has slight jerking on one side of his body. If he is having one in his sleep, it can look like he is dreaming because he will grimace ( or smile) on one side of his body and he lipsmacks. He usually has these in clusters and before the medicine was having alot ( at least 10 ) of these clusters a day. Yesterday was a good day, he didn't have one, but he's already starting with them this morning, so I know how the day will go. It is frustrating and scary because he is so little.

Christina - posted on 04/10/2009

Hi, I have a ten yr old, but he started having sezures at 18 months. He went stiff and jerky and lasted til we got to hospital and they gave him meds through an IV. All tests came back normal except for a difference he already had from birth that they said was completely unrelated to the seizure. They had no idea why he was having them or what area of the brain was being effected. They sent us home and he had many more of the same type therefore he was put on meds. He has been on many different meds through the years due to growth or the meds becoming uneffective. They also said he may grow out of it and he may not. They really did not seem to know much about them. He has however live a mostly normal life. The only time he seems different is during a growth period where he has a couple sezures and we have to adjust the meds. The only thing he doesn't like now that he's older is not being able to do some things alone due to the fact some friends parents don't wanna be responsible if he has problems at their house...i.e. fewer sleepovers, bike riding with friends, swimming without adults only with lifeguards which I won't allow him to do for safety reasons etc. I've kept things very normal for him and he gets along great.

Christina - posted on 04/10/2009

Hi, I have a ten yr old, but he started having sezures at 18 months. He went stiff and jerky and lasted til we got to hospital and they gave him meds through an IV. All tests came back normal except for a difference he already had from birth that they said was completely unrelated to the seizure. They had no idea why he was having them or what area of the brain was being effected. They sent us home and he had many more of the same type therefore he was put on meds. He has been on many different meds through the years due to growth or the meds becoming uneffective. They also said he may grow out of it and he may not. They really did not seem to know much about them. He has however live a mostly normal life. The only time he seems different is during a growth period where he has a couple sezures and we have to adjust the meds. The only thing he doesn't like now that he's older is not being able to do some things alone due to the fact some friends parents don't wanna be responsible if he has problems at their house...i.e. fewer sleepovers, bike riding with friends, swimming without adults only with lifeguards which I won't allow him to do for safety reasons etc. I've kept things very normal for him and he gets along great.

Christel - posted on 04/10/2009

My daughter just got word that she might have this seizure disorder. It is one of the rarest Early infantile epileptic encephalopathy or Early Myoclonic encephalopathy. The doctors are not sure. When Madilynn was born she had very low tone and tremors. Everyone new there was somthing not rite but they could not pin point it. She showed normal on all test that were done but one EEG. So We finaly got to bring her home (with a G-Button) and as time has gone by she has not gotten any better. My daughter is almost 7 months old and yet we still have no awnsers. But what we do have is a hole bunch of people who care. And we still have are heads up high. All I can say is never give up hope. Everyone has there moments of stress take it and be stressed- but come out strong for your little one. We are on our second Hospital (Stanford, CA) now. We have are fingures crossed as for you I will cross my fingures for you too. I wish you and your family the best.... May you find awnsers.. Love Christel (Madilynns Mommy)

Amanda - posted on 04/08/2009

I agree, there have been quite a few times I have said things to doctors when they didn't believe me. I couldn't tell you how many times I was right and the nurses/doctors appoligized to me. When it comes to my kids I will not take no for an answer when it comes to their health!! I cannot take seeing my daughter in pain like that either, but as long as you know you are doing your very best to help. Well thats all that matters!!! :D

Amanda - posted on 04/08/2009

hi i felt really alone as well, my son started having seizures at like 1-2 months of age. the doctors wouldn't listen to me they told me it was colic and that some babies were just fussy. i was being a young over worried mom. i knew better, his father had them as a child and i knew that what was going on was not normal. he had one in front of a nurse and that was when they finally believed me. you have to stick it out for your child, they need you to be their voice. i don't like how his neurologist is treating him so i am going to be traveling over 150 miles to the only other pediatric neurologist in the area. he is my world, he need me. that smile that he gives me every morning is what keeps me going. it hurts to know that i cant top the hurt but i can do everything in my living power to make sure i do my all to at least get it under control and thats all we can do, don't ever take no for an option. there is always more that can be done.

Lisa - posted on 04/08/2009

My daughter was diagnosed with absence seizures at the age of 3yrs, they tried all medications but couldn't control them! Eventually at the age of 13 they suddenly stopped! We're not sure if it's the meds controlling them or whether she's grown out of them. I think the only way to find out is to slowly take them off their meds and see if anything happens. That's what we have to do now which is going to be a bit nerve wracking!

Amanda - posted on 04/08/2009

Thank you!! All of you. You really helped me stay positive. My daughter is on medication and they are doing a series of test to see what the problem is but still have found nothing. Her behavior lately has been good. No siezure activity, no strange staring, nothing! We are not yet going to get our hopes up because you never know what can happen, but her neurologists says thats a really good sign not having any more siezers so her chances of growing outta it are high!! Thank you all again and I hope all goes well for all of your children! I'll pray for them! God Bless!!!!

Jamie - posted on 04/07/2009

Keep on testing!  Make sure your daughter is diagnosed with the correct type of Epilepsy.  There are over 20 different types of epilepsy and 22 epliepsy syndromes.  If she is not correctly diagnosed it will cause major problems in the future.  Find a good neurologist!  Ask for every test to help determine whats going on with her.  24-hour EEG, 5-day EEG, MRI, etc.  I wouldn't wait for 2 years to see what happens.  We had 2 neurologists tell us to wait for a year and see how my 1-year old daughter does on the medication and I said no way!  Good luck!!!

Yvonne - posted on 04/07/2009

My son had his first seizure at 8 weeks old.  2 days after he was immunized.  His doctor swears that there is no corolation.  He had three seizures, turned blue and his eyes rolled back, I thought he was chocking to be honest.  He was given and EEg and put on Keppra immediately.  We see the neuologist every 3 months and she increased his meds.  She claims he too will also outgrow the seizures.  My concern is how do you know if they outgrow it?  She said by the time he is 5.  She hasn't ordered more tests so I want to know how she knows if he is even still having them.  He will be a year in 3 weeks.  How will they know when he has outgrown it? 

Lindsay - posted on 04/04/2009

My 3.5 yr old started his seizure activity with the turning blue episodes. They changed to myoclonic seizures and then absense. They said he would outgrow his too, but so far has not. He has subsequently been diagnosed with developmental delays. He's had 2 pretty long, scary looking seizures lately and we're trying to figure out what's going on with that. Advise on staying positive? Well, your daughter has never known anything other than her life with seizures...she's just a normal happy baby. The EEG not showing anything is a great sign, but I've learned epilepsy is not the end of the world. I didn't know until my son developed epilepsy that my husband's aunt is married to a man with epilepsy. The stigma of epilepsy was shattered for me when I found that out....he has no limitations. Best of luck to you!

Emma - posted on 04/04/2009

hi. i have a daughter thats almost 4yrs old now. her seizures started at around 7 months. on most occasions she goes into status epilepticus, on one occasion lasting for 1hr 20mins. its absolutely terrifying. she has had eeg, ct and mri scans all return a normal result. she currently takes carbamazipine twice daily.  she is due to have a repeat eeg to see where to go next. the only thing i can reccomend is to stay strong! try and let your child live as normal life as possible i know it is very difficult to sit back and relax while they enjoy themselves because your constantly on edge and looking over your shoulder. iv come to realise that no matter how much we protect them if a seizure is going to happen it will no matter where you are or what you are doing. try your best to relax and let things run its course. a seizure can be dealt with and treated. go out with plenty of company so if anything does happen your well prepared and supported. comfort yourself with the idea that she may outgrow this as i do with my daughter. good luck and take care xx

Tea - posted on 04/04/2009

Hi Amanda ,I have a daughter with abscence seizures,bf the meds she used to have up to 500 seizures a day people used to think i abused my litlle girl cos she used be covered in bruises bit i held my head up high and dealt with the problems day at the time she is nearly 4 now and due to go to mainstream school she has a development of a two year old but she is strong in spirit and mind.Maria is very strong headed litlle girl and that helps me think that she will be fine no matter what she is very happy litlle girl.Maria still has seizures as they can't stop them completley but she leads fairly normal life.One thing I will say to you have a look into your daughter and see the quality and good and minimize the problemsseeing youre litlle girl laugh as a big thing take every step no matter how normal it is for others as a huge progress to you.Celebrate her first step ,her first word as the biggest achivement ever and then you will see how it easy to get trough with bariers that you come across.So for any major problem find a bigger joy to smile about.The hardest thing for us was go trough a cat scan as we had to put her to sleep in most horrible way with the mask she was so frightened but while she was asleep we thought in a jokiey way if we could borrow this for our house as she doesn't sleep that much and we r up most night .So you see no mater how horrible the situation is always try to find some laughter it helps a lot .Your litlle girl need you to be strong for her otherwise she will pick up eventually that something is wrong and that can create fear from docs ,wich results in difficulty treating.You will get to know how to disguise all your emotions infront of everyone and become a very strong person,so if you have absolutly anything else to ask me please do cos i truly know how it is to feel singled out

Nicole - posted on 04/02/2009

My daughter had her first seizure at 5 months old, it was a tonic (hold her breath and get real stiff). It was with a fever so we thought it would stop but it did not. She is now 3&1/2 and still has them. I'm in the same boat you are that they don't know what is causing them but hopeful she will outgrow them. I know how hard it is to watch them go through this it breaks my heart. But keep positive that she is growing and learning, that is what keeps me hopeful.

Lisa - posted on 03/31/2009

HI! My son is 8 months old and had his first silent seizure at 3 weeks. It is very scary. In the beginning it was all staring episodes and then he had a grand mal seizures during which his entire body stiffens, and his muscles begin to jerk! It freaked me out. Now he is on phinobarbatal and as long as I have his levels checked about every 3 weeks he does really good and we don't see any!

Jenny - posted on 03/31/2009

Hi

My son also started with silent seizures at 9 mponhts which went undiagnosed as EEG was clear.  Later diagnosed with epilepsy at 14 months.  Has been on Epilim which keeps them under control - although with wieght increases etc have picked up when he needs increased doses.  The major thing for me is that stays under control & check he gets his meds regularly at certain times.  In the beginning ensured monitored closely the Epilim levels and liver function (side effect of Epilim).  For me it is important for the fits to kept under control and let the child live a "normal life".  Also I watch / work out what I think the triggers are for his fits and watch or try avoid those situations which may cause.  Generally books do say & research indicates in most instances outgrow by 10 yrs.