Where do l begin my little girl lies asleep in my bed as l sit here and scan the net looking for knowledge into this 'curse'....... l hate my babys brain thats the only way l can describe it.... something has invaded and taking over (no wonder in biblical times they thought someone with epilepsy was possessed)lve a lump in my throat the size of a mountain and a head full of worry and a heavy aching heart.... now l know theres folk worse off but shes my baby girl my pride and joy and lm feeling really sad right now and so scared of the future not knowing what its going to bring.This is going to sound mad and ive never actually ever mentioned or wrote these words before, l had this feeling along while back,but l knew a while back before the 'seizures' that something didnt feel right even though there was nothing to suggest it gut instinct mothers instinct whatever you want to call it l cant even type what l really felt..cos it scares me... l had a feeling something wasnt going to be right without good reason or any reason , its hard to explain to sum it up im scared really scared im trying to be brave but it hurts like heck my little princess my perfect baby girl my clever girl ld take it all from you and have it myself if l could have 1 wish how do you all cope? How do you cope seeing this happen to your child ? Honestly its ripping my heart out

Oh sweetie. I know exactly how you feel. It's like your world is turned upside down. I always knew there was something different about my son too, but we are all different right? Patrick is my only child and most likely the only one I'll ever have. It's hard to come to terms with the fact that he isn't "perfect" Still I love him so. You just have to grieve for that perfect child and let them go. Pray that God gives you strength. I know this is really hard because the future is so uncertain and we want our children to have a wonderful trouble free lives. Just do your best to see all the wonderful things she can be and is already. Epilepsy is only a small part of who your child is. She's still the beautiful,clever girl she always was. Pray that God guides the doctors into the very best treatment too. They do the best they can but if they knew everything they wouldn't say they are "practicing" medicine. Read everything you can get your hands on. Knowledge is power. Take a deep breath and just gaze on the beautiful miracle you have before you. It's really difficult at first. I do still have some very bad days. As time goes on I pray it it will get better for you.

God Bless,
Julie

It is so heartbreaking. JUst keep telling yourself that this is the same angel that you love and cherish. She will still do so many things to make you proud. You will be amazed at how much more your heart will swell with pride as she fights challenging times!

Thank you for your replies and deep understanding (Y) lm sorry but lt really really hit me last night for the first time, l was watching her sleep and l thought 'you poor little innocent thing you poor poor baby why why why?' (shes 9 but shes always my baby ) you lot are marvelous and its peace known theres others who feel the same .This morning l thought maybe l sounded a bit 'mad' with what l wrote but l meant every word and it come from my heart. I feel a brighter today and maybe l needed to let that all out buliem ,kayak thank you for been here lots of luv niecsey xxx

Niecsey, I know exactly how you feel. It's the most terrible feeling in the whole world to be helpless in helping your child overcome their seizures. My daughter, Jasmine, who is now 18 months was diagnosed with epilepsy (infantile spasms) at 2 months. She isn't able to do anything at all, she's just like a newborn still because her seizures are so bad that it has stopped her development. I pray for your daughter because I know exactly what you and your family are going through. Sometimes it's hard becuase they are so little and precious and do not diserve this "curse" at all. I hope for the best for you an your family. Lots of love, Tonya

Hi - your words soud so much like my life 20 years ago with my daughter Rebecca - originally diagnosed with infantile spasms and then it became lennox gastaut. She functions at around age 4. It continues to be very difficult and my heart is always heavy. I have stayed home with her for all those years and now she is in a group home which is supported. We have her as frequent/often as we like. We are committed to her care even though she does not live at home full time. She is here right now and she was up all night with seizures. She had 5 tonic clonic seizures yesterday and hurt her leg on one of them. I hate when that happens. The difference now is we are more rested and remain very strong as a family. We have worked hard at it, but it was worth it. My thinking way back was that if I was going to do this, I was going to do an awesome job of it. You will need many years to get through the grief process and every once in a while it creeps back in. Just let it. It continues to be an emotional journey. Let it be what it is, but always try and make some personal progress. Your love for your child will guide you on your journey...............take care and reach for the stars...........Paula

Hi Rebecca's mom,
Your life does sound very much like mine. What age was your daughter when she was diagnosed? I have some very hard days just wondering why someone so tiny and precious has to go through all of this. Jasmine has been through more in her short 18 months than anyone should have to endure in their entire lifetime. I feel so awful for her, and I love her beyond what words can express. Keep in touch and let me know how things are going. Tonya

Niecsey, what kind of treatment is your child getting? I didn't see mention of a doctor. Maybe I missed it. I know it must be difficult for parents, but I am the one with epilepsy so I can speak only from the standpoint of the patient. I know my father has always had a problem with my epilepsy. I think he feels it is a reflection on him in a big way. He has always denied it and never made sur i got the care I needed. His attitude had a huge negative effect on me that has lasted a lifetime and probably will. It also colored the way my siblings and other relatives view me. I point this out since you have the opportunity to shape the attitudes of those in our child's life so that it can be better for her than it was for me. I always have felt like I was on the outside looking in, and you can make sure that your child doesn't go though life tryng to fill that very empty void left by being considered "different", odd, or being "cursed". I encourage you to seek out a good Medical doc, and pediatric neurologist whio has a LOT of seizure patients if you haven't already. There are so many causes of seizures that it will take a thorough assessment to determine if there is another treatable cause. it sometimes takes persistence and enough detrermination and love for the child to do the hard work that may lie ahead. You will find other stories of hope and struggle on here from parents who did eventually find solace or serenity and understanding of the illness and options available. Thank you for sharing your story with us, but do not give up on your child. She deserves as great an opportunity at a good life as we all do. It may be up to you to seek out those who may be able to offer her that. Please keep in touch and if you have other questions or need support, this is one of those places to find that. Phoebe

Thank you all for replying ((((hugs)))) l am lucky because just by reading these posts l see alot who are worse off and l really really feel for you all (Y) we wont stop her doing anything at all or let anybody else treat her differently because at the end of the day a childs a child,there all the same no matter what affects them, shes still the same girl she was ,l just discovered l have more love inside of me than l thought possible!! Friday l have to ring the consultant to get an appointment with regards to the Mri and the sleep deprivation test so fingers crossed l will know more l think its the waiting and the lingering and not knowing anything that make it worse plus theres always a chance they might not find a reason.... shes on no meds because the seizures we are aware of have been far apart(last 2 6months apart) thats not to say they hav'nt been happening for years and without out knowledge whilst shes been in her own bed ( we only caught 3 or 4 because twice she was falling asleep and we had to/tried wake her to go to bed, one when she was complaining of feeling funny and ill so she slept with us and had one asleep and choked and stopped breathing (that was the 1st one we experienced) and the other we heard strange noises in her room and found her been sick and couldnt wake her up........how many or how long we have NOT been aware of.........?) l really really feel for you all l 100% totally understand what you feel l hope you all get sorted as soon as poss sorry this is just a quickie as lm due at docs thank you for taking time to reply xx best wishes niecsey :wave:

Hi Rebecca's mom,
Your life does sound very much like mine. What age was your daughter when she was diagnosed? I have some very hard days just wondering why someone so tiny and precious has to go through all of this. Jasmine has been through more in her short 18 months than anyone should have to endure in their entire lifetime. I feel so awful for her, and I love her beyond what words can express. Keep in touch and let me know how things are going. Tonya
Hi Tonya - Rebecca was diagnosed at age 5 months. I new from the start that something was not right. She was witnessed having a seizure at age 3 months. Before that they said I was just a nervous Mom - wow. Through it all I have to say that I love life. I do not surround myself with any negative people. My husband and other daughter have have had nothing short of awesome people around us. We do, however, reach out. Everyone (including Dr's) have been very supportive to us. The school system, case management through developmental services have been realistic in their approach to our family. Direct caregivers have been many and many have been diamonds. Those that are not, we quickly move on. We want Rebecca to have "quality of life" to which we have made decisions that since drug theapy does not work, we keep her on minimal of meds. Having her drugged up with side effects (especiallly being lathargic) is not in our plan. It makes for lots of decision making but never to look back and only make progress in her life is our approach. She has had a corpus collasotomy and a vegal inplan as well as the keto diet......none have worked. There is no pattern to her seizures and we stopped trying to figure them out. Every case is different and never to lose hope but we want to always remain realistic. Our Dr's and caregivers need to be part of that scenario as well. They have been. It has been team work. With Rebecca now in a group home, I can think clearer and I continue to manage her care. It will never change and we are with her alot and she comes home alot - that is the best for our entire family. I love my sleep and when I am up all night with her now - it is an honour. ..........Loving life and all it has to offer............Paula

Hi Niecsey,

It's been months since I've posted here... several reasons... mostly just LIFE!

I have 2 children with Epilepsy. My daughter Jenna is 16 (and yes we now have a learners permit :eek: ) her seizures are very controlled with meds. My son Jake is 3 has been seizing since 10 mths. Nothing has helped Jake! We are now on our 6th med, soon to start a 7th, plus the Keto diet!. Jake has also be dxed with Autism. Jake does not speak nor feed himself... BUT, I love him more then I could ever place into mere written words.

So you can see the Epilepsy can come in many forms with varying degrees of limitations. Jake's are extrem, Jenna's only restrictions right now are now deep sea diving or sky diving! :p

You can be proactive in your daughters care and it's the best thing you could do for both of you!

Keep detailed records of her seizures and her developmental milestones~

We started out with a journal for Jake, this has now changed to raw numbers on a sheet we keep in the kitchen that everyone in the family can enter to when they see a seizure. Since he was having up to 50 a day for awhile I knew I wasn't catching most of them and included the whole family!

Developmental milestones to watch are major motor skills, fine motor skills and language development. Please note that meds can play a part in some slowing, but should not stop development altogether!

Learn about the meds your dr may place her on!

As Paula said reach out! Don't do this alone. If you find family to be hard to deal with then simply be straight up with them, I had to tell my parents when we started the Keto diet that if I ever caught them cheating with Jake, they would not be allowed contact! If they tell you that you're making more of this then there really is, that no one else in the family has seizures etc... Ask them to keep comments to them selves or do not see them. I went for over a year without talking to my sister, and we are both better for it now. The energy that it took to defend my son and daughter's condition was better spent finding them the treatments they needed!

In closing you are not alone with that Momma's gut feeling! I knew months before Jake had an actual seizure that something wasn't right, the same with Jenna. She was treated for ADD for years until a pede asked about Absent Seizures, she had her first grand mal when she started her monthly cycles.

I wish you the best of luck!

Love and light,

Lisa and kids

Hi Lisa WOW!!! 50 a day?????OMG you lot are fanatstic!!thank you for all that... l am surely luckier than most of you and just starting the long and whinding road thank gawd for the HB's!!! I rang the consultants secretary Friday to arrange the appointment regarding the sleep deprivation eeg and the mri scan she is getting in touch with me this week l take that as a good sign as if anything major was wrong they would of been in touch earlier! I;m wondering if she is going to start having them while shes awake now? Do they progress to that? And lve already wondered when she starts her periods are they going to get worse? I guess its a waiting game... so far everyone has been great we havnt come across any negativity...we havnt discussed it with everybody either till we know what we are dealing with everybody who needs to know knows.Thank you for thinking of me and wishing me luck all the best to you too and your family. It was such a shock and l expressed myself by posting this thread l got myself all worked up and l was mad and sad all at once lol lm feeling better now :) Take care huna d thanks again xxxx luv niecsey :wave:

Hi, every long sorry~

It's good to hear that you are doing better with the whole thing. Wonderful news that the Drs are getting you in and will be testing very soon.

It can really throw your life a curve ball... We sometimes refer to that first day with Jake as "The Bus Incedent"... You know where we were slung under the big bus of life... LOL ;) It's OK to be sad, angery and scared, BUT Don't dwell there. Your little ones going to need you at your best, use the energy you would spend on those emotions to help her get through this!

As far as how they progress... Seizures can take on a life of their own sometimes. Sometimes they respond very well to meds other times they don't, and some of the lucky folks seem to have theirs slip back from where ever it was that they came from!

Jenna's started out at around a year old I guess. She was always very high strung and very, very spacy. But, she was also very bright and hit all her milestones at or before my oldest... She was in 6th grade when a wonderful Dr first talked to me about maybe being seizure activity. We had her first tests months before I found out about wee Jake! She has only had 4 grand mals that we know of. All have happened at school, during testing and on the first day of her cycle. We have really worked on controlling her daily life so she is healthier over all. Study days ahead of tests (no craming the night of), get at least 8 hours of sleep each night the week before and week of her cycle, exercise and DO NOT SKIP MEALS! BTW, we have turned meds over to her now. She takes them on her own and tells me when it's time for a refill. I think that she's going to have to manage this on her own in the near future and has to learn that skill while she's still got her safety net around her (ie family and friends at home)!

Jake on the other hand was always a bit behind my older kids. But, we put down some of that slowness to having a whole house full of big people to tot him around, fetch for him and simply think ahead of his wants and needs. At 7 mths when he couldn't sit himself up I was really getting freaked out, at 9 mths I was climbing the walls with worry.

Then that Sat when we saw the first grand mal I knew there was no question that I was right. Jake presents 5 different seizure types. He started out with grand mals that stopped his heart and breathing, then went to staring spells, then Myoclonic Jerks to drop seizures. He as went as long as 132 days seizure free at one point. That's way I will always stress a journal or way of keeping records. The neure did not increase his med levels during a rapid growth spell and we were able to place all that data into a spread sheet and charts. We are in the process of getting back to that ratio of meds just to see if it would have continued to help or only a part of his overall pattern. So far so good... in Feb he was having 30 to 50 per day. Now he's back down to 5 to 10 per day. Making progress!

I thought I would share with you the first post I made to Healthboards. This is something else that you might find useful. I copy a lot of my posts and several of the replies so I can read back through them to get a feel for where we have been and where we are headed!

As a side note, it took me 6 mths to get up the nerve to post the first time!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* ~*~*~*~*~*~

Hey – Can you help me out a little? I need someone to talk to my Mommy!! She’s kind of freaked out right now. I want to tell her what’s going on in my head – but I don’t have grown up words yet!

My name is Jake and I’m 16 months old. I have epilepsy, 3 types of seizures, complex partials, tonic/clonic and absents, Doc says they start in the front left temporal lobe and he’s having a really hard time getting them under control. It happens a bunch; my record is 31 in 30 days – so I check out quite a bit. I think it started when I was really little – maybe 6 or 7 months – that’s when I began to slow down some. But it got really bad when I was 10 months old and I had to spend time in the hospital.

That day was pretty wild – I don’t remember much of it because I had 3 grand mals and I really checked out big time. Sometimes I forget to breath when I check out and I turn blue, I guess my heart slows way down too because I set off all kinds of bells and whistles and they called a “Code Blue” to my room. Hey, did you know that Dr.s are allowed to RUN in the halls at the hospital?

I’ve been to the hospital a bunch since then but only for tests. I’ve had a MRI, it showed Daddy what teeth I was going to get next, but it didn’t show Doc anything. I’ve had tons of EEGs (these aren’t normal), CAT scans and x-rays of my ******, but again Doc didn’t see anything, he’s trying really hard, but he just can’t find out why I do this so much. So, he gives me meds; I take Dilantin, Tegratol and Trileptol.

Doc put me on to this really cool Drug Study – I guess I’m pretty special, because with Mommy and Daddy’s help I’m seeing a whole team of folks who are working to get FDA approval of Trileptol for little guys like me …there’s only 128 kids world wide getting to do this. So far so good, not sure if it’s the new drug or just my normal cycle.

Doc. told my Mommy that I have Global Developmental Delays and it made her cry, Daddy too. But, there are tons of things I can do; I just do them a little different then other kids I know. Sometimes I forget how to do little things (especially if it’s really new to me), like clap, wave bye-bye or even how to say Momma and Dadda. Everything seems to come back during slow activity times. Docs not sure if this is because I have seizures or because of the drugs or that theres maybe something else they haven’t found that’s causing both. I get help from a couple of real nice ladies who come play with me Daddy calls them therapists, one is helping learn to walk I am so close!! And one is helping me to remember that I put my paccy under the cup on the highchair…Shwoo, I’ll be glad when I get that one down. I hate that feeling – like I know it’s right here …but where?

Momma and Daddy are pretty good with all the medical stuff – I’m never late on my meds and I get blood draws every 3 weeks! But they’re not part of this whole E business (they don’t check out) so they’re having a pretty hard time with helping me deal with everything and they’re pretty scared they’re not doing something or doing things wrong. Mommy would really like to know what makes grown ups feel better afterwards, Doc calls this postictal, and Daddy would like to know if there is anything they can do to lessen over all activity. He says I have an aura, some how he knows 3 or 4 minutes before I check out that I’m going to go. He tries to get me to a quiet, safe place especially if we are in the car or shopping.

*Yawn* this is really long sorry, but I knew that I’d nap better if I asked for help first…

Thanks – Jake


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~
Jake is 16 months old and we have been on this journey with him since Oct 26, 02. I feel like I am still very new to the world of Neurology, Seizure Disorders and Epilepsy. But when I read posts made to some of the sites where I sometimes lurk, I realize that I'm not a Newby at all, but a full fledged, living it in the trenches, veteran. I use words like Trough Levels, Blood Sticks, Transition and Break Throughs... not only do I use them - I know what they mean and how they relate to what type of day we are going to have!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~

Cassie

I have three children. My first two were boys and I prayed so hard for a little girl of my own. I finally had her after a scary pregnancy. At nineteen months old, Raven was asleep on the bed when she had her first seizure. It was New Year's Eve 1999 and we were all anticapeing ringing in the new year at the house with movies and food. It didn't happen that way. Instead we were sitting in an ER for six hours and then our little girl was whisked into an ambulance and sped to another city two hours away. She was having a seizure every twenty minutes. We were there a two weeks with one being in ICU. We brought her home and she started having a seizure every five minutes. I called the doctor and told her about it but she thought I was taking every moment as a seizure. I finally called a month later and told her that I didn't have a daughter anymore but a beautiful doll that I could show off to my friends and family. I explained that Raven couldn't talk, walk, sit up or stay awake for more than two minutes. They had her admitted to the ICU at Children's hospital which was three hours away from home the next day. After two weeks there, they had her meds situated. She is seven now and still has them but can go months without one due to her meds. She is learning how to talk because the seizures left a part of her brain damaged. She has a form of ADD and is developmentally delayed. She acts like a four year old. We have to watch her constantly because she doesn't have any concept of right/wrong and safe/unsafe. She loves all strangers and will go with them in a heartbeat. Going to the store with her is stressfull because I have to pay more attention to her than my shopping. She doesn't hestitate to walk out of the house to wonder, touch anything hot, or jump into any water. She is finally in school, in a regular class with an aide. We have to be at the school constantly to make sure they are adherring to the same safety guidelines that we do at home but luckily everyone is working together to keep her safe. Just look at your daughter the same way I do mine....with pride and love in your heart and eyes. My daughter is special to me and the rest of our family. We have started learning sign language as a family. I always tell people when they commend me for not complaining all the time after working and taking care of Raven - "I prayed for a daughter of my own no matter what and God decided to give me a special one!" I still worry about something happening during a seizure and losing her but I leave that in God's hands. Raven is and will always be my little :angel:
Cassie

Awww bless you all your stories really move me, l did reply to Lisa's last post here but somehow it hasnt showed up.....strange...... nice piece Lisa x l got the MRI results through post this morning..everything is normal! Thank gawd l was thinking tumors and all kinds.Still no word from the sleep deprivation test prob norm too? Yes all our babies are special no matter what . What a great name Raven its gorgeous :) I just want to thank you all for been here although l would rather noone had to be here if you understand me, take care all sorry this is short but ive got a busy morning l will keep in touch hugs to you all luv niecsey xxx :wave:

It's nice to see other mother's struggling with this. My daughter began having seizures at 6 months old. No one believed me! You know mother's instinct. She is my third child and that instinct kicked in that something wasn't right. It wasn't until I caught 2 siezures on video that her pediatrician decided that she should be checked out. Even the woman doing the EEG after Kathryn was strobed said that it wasn't a seizure-although it was the worst one that I saw. She was admitted and immediately put on tegretol. Her meds consisted of tegretol, phenobarb, clonidine, and finally ACTH which was her miracle drug. Her seizures finally were in control. The steroid however, made her stopped developing for 6 months. She was finally weaned off at 15 months and we never saw another seizure until last October when she was 3. Poor little thing had a grand mal on the toilet!!! Once again, no one believed me, even her father. I immediately got her back into her neuro who asked me if she had the tendency to stare off. Well yeah, I thought she was in "lala land". Nope! She was now having petit mal. In the 20 minute EEG, she had 5. So now she is taking lamictal. She has always been a kid that we were unable to get her at a therapeutic level with her meds. When she is sick, even with a low grade, her threshold is lowered and she can have quite a few. But, she is a trooper! I am so proud of my little girl! Bottom line, never take no for an answer. Mother's instinct is more powerful than modern medicine

Thank you for that it so reassuring to know 'sadly' there are others who feel the same :angel: and yes 'mother know's best'! Take care xx niecsey

Hi everyone...

If there is ONE thing I have learned over the years is to be proactive in your child's treatment and to never accept no for an answer until all avenues have been covered. You are around your child 24/7 and know how meds affect them. You see the behaviors and patterns. Katie was on 7 different meds over the years, and combos of those meds. There were times when I said NO to a med (phenobarb) and when I felt she was taking too much. It is a fine line to walk, but if you handle yourself properly, most doctors respect the comments of a parent. And if that doctor is not receptive or cooperative, then it may be time to look elsewhere...

We are, after all, our children's advocates. :angel:

Vicki

I am also broken hearted, but because I have a 18 year old who has seizures. She absolutely hates the world and hates me. SHe moved out of the house and refuses to accept any help in her life. It is so frustrating.

((((((((((((((((hugs to everyone))))))))))))))))

I sat here and read your letter and cryed. My daughter is 28 the mother of 3 beautiful children and has had seizures since she was 16. She moved from Arkansas to California for medical issues. Now California said she does not have epilepsey, they say she has neuroligical migranes. Never the less she is still having endless seizures.She has 12 + seizures a day, It has gotten so she can not take care of herself or her children. I know how you feel. I dont know what anyone can say to make you feel better about it cept maybe "Ive found a cure for the seizures."
I pray for you and all who have the same feelings, I pray for the research doctors, and the doctors whom take care of our children that they find the right approach for each and every one of them. I pray for you, and me to have the strength to deal with this, nothing can feel more helpless, than seeing your child have seizures.
I've found this is is a good place to vent when you need to. There are lots of people in the same "boat" as you here and understand.
God Bless you, all
Sherrie

Hi Sherrie (((hugs))) lm one of the 'lucky ones' as far as lm aware since my little one had the last seizure she hasnt had another...... unless lve slept through it! She is still in my room l wouldnt sleep if she were in another at the moment we are hunting out the 'baby alarms' so she can go back in her own room and l can hear her just like l can when she sleeps near my bed its small comfort and l know l shall not sleep peacefully at all l really really feel for all you guys l wake all night and check she is still breathing and warm recently where l live there has been 2 child deaths through epilepsy and it scares the life out of me both due to 'sleep seizures'. She is very restless in her sleep now and often will rise up on her elbows and will look around asleep and l gently say 'lie down baby, mammys here ' and she lies back down she was one of those kids who woke in the same position as she fell asleep once upon a time ago lm wary/aware of everything every little change. My heart goes out to you and others in the same 'boat' its so hard and heart breaking the boards a wonderful place for sharing, caring, advice and venting. Take care hun thinking of you xxx niecsey

Phoebe
I also am the one thay suffers from siezures. I am 28 years old and was diagnosed with epilepsy at 16. they now say that I do not have epilepsy but have no idea what is causing the siezures and I have them almost daily. You are right that there a lot of things can cause them and is not easy to diagnose if it not epilepsy. The drs. are saying now that there may not be enough research on the brain to figure out my problem in my lifetime but hopefully to help someone else. I do all I can to let them test me hoping to help someone and It has been very hard for me reading these posts and hearing that such tiny babys and children go through what has ruined my life. My mom e mailed me a link to this site after finding it and crying over every page. I hope for the best for each of you i know what you are going through. The best to you all, laura

niecsey,
I am glad to hear that your daughters mri results came back normal, just do not give up on the sleep depr. eeg, not all kinds of epilepsy show on those if you have the insurance to cover it you need to make the doc admit her for a 24 hr. video moniter eeg. they will hook her up to an eeg and video tape her every move untill they capture enough siezures for the data. I did not get on for years and carried the stigma of epilepsy all that time and now i have gotten one and they say i do not have epilepsy, i feel that had they done this test sooner maybe i wouldnt be having siezures every day now. They think it may be some type of migraines but it is another "think". Ask for the test no matter what your results are and take no for an answer. good luck to you and you sweet angel, my prayers are with you all, laura :angel:

hi xxx thank you all for your replies. I still havnt heard what the results were for the sleep deprivation test....... lm in the UK so l dont know how and if they will go about a 24hr test l can imagine them saying no because l dont know how often they are happening l really do feel for all of you your 'cases' are worse than mine and l cant even begin to imagine the suffering you all go through its unmeasurable. Just a short note as its not my tune on the pc lol take care all and thanx again thinking of you all xxx all my luv niecsey

Hi all just recieved a hospital letter this morning her appointments been brought forward 3 months! (supposed to be in october as they thought we would have to wait for mri scan) so July 4th we see the consultant again will keep you all posted xxx

Having an epileptic in the family is not only tough for the epileptic, it is tough for the whole family as well. My whole family parents and distant family have had difficulty accepting the discovery of my epilepsy. I am one of two people in my whole family who are epileptic. As your daughter grows up try to be there for her but never say you know what she is going through. As a non-epileptic you do not know what we go through and when non-epileptics tell epileptics they know what they are going through it leads to tension. My mom and I learned this the hard way during my addolesant years.

But I do feel your pain. My first seizure happened on my mom's first mother's day which was also her birthday. Even today I have these thought about what mom mom imagined that day was gonna be like. Instead she speant it nervously pacing around the waiting room of the E.R. I want to suggest you check out the first message I posted on this websight. http://www.healthboards.com/boards/showthread.php?t=238198 In it I poured out all the pain epilepsy has brought to me. But I always find that light at the end of the tunnel

I wish you and child the best


Ethan

E.E.G confirmed sleep epilepsy!

I am new to the boards and it just makes me feel so much better to read how scared and upset other are. My baby girl is just 9months old and has "sort of " diagnosied with partial complex w/generalized seizures. SHe started Keppra and we ahve seen improvemet but haven't had an MRI yet or a second EEG. She is my 3rd child all girls and has always been so happy and I don't want this to change who she is. She seems to be more aggitated and cryes more. I feel like half the time I dont' know if it is normal thing she is going through or if it's the seisures......AAAHH I don't wantt o be over sensitive to it and make it all about seizure but then again what if I see something and don't tell the doctor and it's important.... Anyway thanks for listening and I pray for all of us to find some peace and acceptance with this.....:) Pam in NH

Where do l begin my little girl lies asleep in my bed as l sit here and scan the net looking for knowledge into this 'curse'....... l hate my babys brain thats the only way l can describe it.... something has invaded and taking over (no wonder in biblical times they thought someone with epilepsy was possessed)lve a lump in my throat the size of a mountain and a head full of worry and a heavy aching heart.... now l know theres folk worse off but shes my baby girl my pride and joy and lm feeling really sad right now and so scared of the future not knowing what its going to bring.This is going to sound mad and ive never actually ever mentioned or wrote these words before, l had this feeling along while back,but l knew a while back before the 'seizures' that something didnt feel right even though there was nothing to suggest it gut instinct mothers instinct whatever you want to call it l cant even type what l really felt..cos it scares me... l had a feeling something wasnt going to be right without good reason or any reason , its hard to explain to sum it up im scared really scared im trying to be brave but it hurts like heck my little princess my perfect baby girl my clever girl ld take it all from you and have it myself if l could have 1 wish how do you all cope? How do you cope seeing this happen to your child ? Honestly its ripping my heart out Your story brought tears to my eyes. I have a 14 yr old boy with autism and i still look at him when he's sleeping and wish... i don't know if this will help, but you have to see each day, each small joy, and cherish them and know that there "is" a reason we were given these children to love and care for. a good friend told me once, "us ordinary human beings have to work to get to heaven, our children are already in the arms of angels, and we get to love them while they are here..." from: dannys mom

Hello Dannys Mom ((((hugs))) thank you for adding to this post. Loved the bit you added to the end 'us ordinary human beings have to work to get to heaven, our children are already in the arms of angels, and we get to love them while they are here..." that was lovely and so true. Its comfort knowing there are sadly indeed others out there and lm glad we have this board to share and comfort each other l for one would be lost!without it! Thinking of you all xxx luv niecsey

BUMPING this thread up to help the new ones (Y)

Sweet woman, thanks to you for the first time since we found out what my sons fits were about I have not felt so alone. HEaring of your tears and pain has made me stonger to deal with the days and nights ahead. To have carried your child so close to you and to now feel so helpless tares me apart. it has been a couple of years now but still every night when he sleeps peacfully I sit by his bed and cry for him. Then I find the srength to fight it another day. He is so brave and deals with it all so well he is only 6 and is even able to make jokes about it from time to time. He is my hero in life. I wish you and your child all the best, wish I could give you a hug when your tears come, know you are not alone. Mel.

Thank you so much (Y) we do get stronger in mind but never in the heart how could we???? There our babies for ever good luck to you and your little boy xxxx

Oh my, you have just described exactly how I feel. My daughter Hannah is 5 and was just diagnosed with partial complex seizure disorder. This disease looms over you like a black cloud, wondering when the next episode will occur. Hannah's first seizure occurred last Sunday and she was put on assisted ventilation for a short period before being flown to Children's Hospital and didn't wake for 8 hours. That was the longest 8 hours of my entire life. I shake all over every time I talk about it and I can't believe that my baby has been diagnosed with crazy disease. Hang in there. I'm sure if you are religious.....but if you have faith believe that God will protect her. Right now all I have is my faith and on Sunday night I made a deal with God.

niecsey reading ur letter was like reading my own post.. my little boy started having convulsions at 14 mnths old ( febrile) but was diagnosed with epliepsy in august lasat year.. i know how u feel mate and i dont know really what to say.. we waited for a year for a appointment to come through from GOSH for a 24 hr stay for variuos blood tests and scans... we has an 18 hour EEG to which they picked up nothing any different .. i lay there looking at him thinking why was this awful thing evented and put into our children what did anyone deserve to be given this .. my heart goes out to the people that suffer with eplipesy and i would trade myself just to make my little boy well again .. he use to be so happy but now all he seems to do is cry and be aggressive i jst want my little boy back........if u ever need someone to talk too i am here i know exactly how u r feeling right now and these boards have really helpes me as i now know i am not on my own ......

Hi all xxx be reassured we all feel the same thats why we are here, my life will never be the same again l cant put my child to bed for the night and go relax as well you all here know it............. it seems an eternity since l could put her to bed and relax for the night an eternity since l walked away from the school gate and had no worries oh how life changes ......... be reassured none of us is alone... wishing you all a safe and a merry xmas and best wishes for the new year hoping things will improve for all of us take care xx luv niecsey

Hi all xxx just reread your posts and l feel humble to have touched in you what l myself feel if lve done one good thing this year then ive helped some of you here thank you for that l feel gobsmacked!! :angel: xxx take care all

Hi there......
I know it is the worst thing in the world to see you baby girl having a seizure. My daughter Paige is so beautiful and smart and started having seizures at the age of 9 as well. I am not sure what kind of seizures your baby girl suffers from but my daughter had lots and lots of test and finally we got an answer. She has what is called Benine Rowlandic Epilepsy in children. The better of all of the seizures(if there is such a thing). The Doctors have told me that she will out grow the seizures by 16 years of age or so...... I sure hope that is the case!!! She is taking tegretol for her seizures and does very well on it. She doesn't have any seizures when she takes it the way she should. If she misses 3 doses then she does have a seizure. We try our best to monitor her medication. Paige is now 12 and is doing great. She is tired of taking the meds but she does understand the importance of it and knows it won't be forever hopefully. My daughter was premature and they think that is probably the reason for her seizures. Even though it didn't manefest itself until the age of 9. Don't be discouraged!!!! I went threw what you are going threw and still am.... Once the doctor finds the right Medication for her and sets the right dose, I'm sure you daughter will stop her seizures all together. Just give it a little time and you will see..... IT WILL GET BETTER!!! Don't let your daughter see you scared and devistated. She will feel Scared and insecure. One of my good friends suffers from a worse type of epilepsy and has had seizures all of her life and has lived a very normal life. She is 37 years old and has 3 heathy kids. There are so many advances now, and they even make medications that a pregnant mom can take during her pregnancy. It really is amazing. You can live threw this just like many other moms have. Your baby girl is going to be just fine, you'll see..... :)
I wish you and you daughter nothing but the best!
you will be in my prayers tonight......

Thank you it seems alifetime ago since l posted that thread my daughter has just turned 10 now and has left temporal lobe and is now doing good on the tegretol. Yes l know how everyone feels and were all here for each other which helps a great deal its good to hear your daughter is doing good too!!! MAY IT CONTINUE FOR ALL OF USX Best wishes everyone xxx

I have a 1 year old daughter who started to have (starring episodes) at 7 months. I felt that it was a seizure so my pediatrician said take her right to the neurologist. The EEg showed a lot of activity and she was diagnosed with partical complex with generalized seizures. We then went to Children's Hospital in Boston for an MRI and they found a brain tumor. On October 17, 2005 Taylor had the tumor removed. We celebrated her 1st birthday on October 28th at home and she was running around like nothing ever happened.
SHe is still taking Keppra and will continue for a while. We had a tough time with the Keppra for a while it made her VERY crabby, but we have since changed her dose and it seems better.

They are not sure if the seizures will go away or not yet. We are scheduled for more MRI's this month so we hope for good news. I hope she doesn't have to deal with the meds ands worry about seizures for the rest of her life but I am so greatful that her tumor was benign and they were able to remove it. She is a very strong willed baby and she is precious. It is so hearbreaking to se your child in pain or have something that isn't "normal" to have to deal with. I guess after spending a week at Children's and seeing kids that had it worse off then we did it was humbling (now not while we were there).

I hope that all of your children will live a life that is as seizure free as possible and they are happy!

Pam in NH :)

Hi young x thank you for posting here l hope you little one also has a trouble free life thankfully the tumour was benign but it doesnt make things less scary ,its a horrible horrible thing this but were all here for each other sorry cant stay on pc long to do a detailed post as l have the flu and my head is busting best wishes for the new year (and healthy ones too) xx take care all