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Old 07-24-2004, 03:32 PM   #1
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Question Please give advice, my 3 year old, I am worried to death....

Hello,
Thank you for taking time to read my story. My daughter is 3 years old. Up until 1 week ago she has been a happy healthy young girl. Last Friday she had her 1st seizure, which was a completely horrifying experience. AT one point she stopped breathing and turned blue. It has been a week, and now she has had 2 more seizures in a 24 hour period. The doctor has put her on Topomax. All of her tests thus far have come back normal. Everyone keeps telling me to relax, and that she will be fine. I am completely losing my mind. I would just like some advice, words of wisdom, or stories to share. I am so new to all this and so scared. I feel so helpless, and I just feel like I waiting for the next seizure. The doctors try and reassure me and tell me that she will be fine, and that there is nothing we can really do. I just am lost. They tell me to call for help if the seizure lasts too long, or when I feel uncomfortable. Well, I am not a doctor, I have not seen thousands of seizures, so I feel uncomfortable as soon as they start. So please, if you have any words that may help me and my little angel, it would be greatly appreciated. I am a single dad, so I feel as if I am going through this alone. Thank you to all who respond...

 
Old 07-24-2004, 04:17 PM   #2
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gagcas HB User
Re: Please give advice, my 3 year old, I am worried to death....

hi there,

first of all i want to tell you that what you are feeling is ok. and to tell you its human. we all go thru it when we have somthing wrong with our child and we dont know what to do about it. a good start was posting here.

could you go into detail a little about what happened before, during and after. if you can remember at all. this may open a few doors, as far as getting a reply. this way they know what is going on and may be able to relate to your type of situation.

you need to start a little log, or journal. in it write down what happened exactly and put down any detail you can. like what she was doing before the siezure, and what went on through and after as well. any little thing. for all of them. dates, times, etc. this will help to set a pattern of whats going on.

you didnt mention in your post about if it was her pediatician, or a neurologist that had put her on the topomax. if there is no neuro in the picture i would suggest getting a referall to a pediatric neuro, or and epileptologist. and have that journal ready. they have a little more extencive(sp) backround in this sort of thing. 3 siezures in that amount of time is not ok. they consider epilepsy as 2 or more consecutive siezures. i feel she needs to be looked at more in depth. what types of testing did they do that came back normal. did she have an EEG done?

i hope to hear from you soon and let you know that if you need any help this is the place to find it. this is where i got all my hope and backbone to keep moving on and my shoulder to cry on when i found out and went through the sytem of epilepsy with my 5 year old. as i have said before this is the place for the best friends you've never met. i truly believe that. feel free to read the posts. you may find something that might be helpful.....oh and welcome to the board.....im jen. hope to hear from you soon.

any one else have something i missed......
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Old 07-24-2004, 04:23 PM   #3
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CraigandBeth HB User
Re: Please give advice, my 3 year old, I am worried to death....

I'm so sorry you're going through this. I can only imagine how scary this is for you. I'm afraid I don't have much advice. I suffer from epilepsy and have seizures often daily. It's a very scary thing to go through and I'm sure scary to watch. My husband has had extensive training in treating epilepsy so I feel a bit more secure.

Mind if I ask what kind of seizures she has? I'm sure someone here can give you good advice. I just wanted to let you know that I'm thinking about you and your daughter.

Beth

 
Old 07-24-2004, 08:17 PM   #4
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Re: Please give advice, my 3 year old, I am worried to death....

Hi and welcome to the boards!

Our daughter (who will be 16 on Monday) started having seizures at the age of 9 months. A long time. She has Complex Partial and Simple Partial. Her EEG came back normal for a number of years as did her CAT scans and MRI's.
Her first seizure started with a fever/ear infection. And continued on after that. She was on numerous meds over the last 15 years and just recently had brain surgery to remove the area of her brain where the seizures were starting from. This was able to be done because we found a specialist (Epileptologist) who could pinpoint the area. Her last seizure was the night before surgery...June 6th, 2004.

Our daughter's seizures lasted anywhere from 30 seconds to 3 minutes (longest) over the 15 years. Yes, I kept a journal of every seizure we were aware of. (reported by teachers, daycare, babysitter etc.) We have 2 notebooks from over the years. I also documented what occurred during the seizures. This is imporant for the doctor because many seizure types have their very own "habits". Like lip smacking, moving only the hands, head turning to a certain direction, swallowing hard, noises (like moans), leg movements, picking at clothes, reaching out, etc. It will become easier as time goes on. In our daughter's case, over the whole 15 years her head and eyes would go to the right. We ended up finding, through the extensive testing for surgical consideration over the last year, that the seizure focus was on the left side, which is what made everything go right. So the info we kept WAS very important. Who would have known...15 years later!

Our daughter is a normal student with an A- to B+ average in highschool. So, even with meds, this can be handled and dealt with. Of course having a good Neurologist or Epileptologist makes a big difference. They will know of new meds and devices to handle epilepsy. And let me tell you first hand, until you learn to be more comfortable, you will feel like you are always waiting for the next seizure. I don't think there is a parent on the boards here that hasn't felt that way. I know I did for a few years until it became part of our lives. You learn to adjust and go with the flow.

As far as the length of time before you call for help...that is entirely up to you as far as your comfort level. We did have to dial 911 on 3 occassions. All before the age of 5. After that, none. Meds were regulated better and we were more comfortable as to how to handle it. You will need to set what is "normal" for your daughter and go from there. We were pretty much: any time Katie's seizure went beyond 4 minutes, that was not normal for her and time to call. Or if she had more than 2-3 in a short period of time (less than an hour). Turning blue can be frightening. Watch the nail beds as well. That is another area that can turn purple or blue during a seizure or lack of oxygen.
If that would occur, it might be an indicator to me to call for help. You can be the only judge. Better to error on the side of caution.

Please let us know what type of seizures you were told she has and what tests were done so far. That will help in finding someone here who could be of more help. I gave you our details so you can see if it relates or not.

Hang in there and hugs to your little angel,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 07-24-2004, 11:41 PM   #5
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Re: Please give advice, my 3 year old, I am worried to death....

Thank you to everyone who has replied so far, I appreciate it with all of my heart and soul. The neurologist told us that each of these seizures were grin mal seizures, beyond that I can not tell you anything more specific. Each seizure she had involved her falling down and then convulsions of sort. Her eyes would snap upwards in her head, and her shoulders and arms would jerk. She did not shake violently, she would just make these small jerking movements. The first of the seizures was the most violent. Each of them lasted from 4 to 8 minutes in length. After each seizure she would remain unconscious or at least very sleepy and incoherent for anywhere from a 1/2 to and hour and 1/2. So has had a cat Scan and that came back completely normal, in fact they gave her a second Cat Scan to be sure. The have given her several blood tests. Each time they have run a series of test, they have come back normal. Also they have tested her urine several times, also normal. Her EEG is scheduled for Monday, and the doctors wanted to wait until after that, however, the neurologists who specializes in Seizure, placed her on Topamax, when she had 2 seizures with 12 hours of each other. He felt that it may reduce the chances that she has another one, and allow for her to be more comfortable until the EEG on Monday. She has not been sick, and has not had a fever, before, during or after any of the seizures. She has also not had any type of head trauma. The doctors keep telling me that the seizures in vast majority of cases will not harm her. They keep telling me that there not much I can do besides, watch her. And in the event that she has one, just lay her on her side and make sure she does not choke, and to monitor her breathing. Right now it is 2:55 am, and I have not been to bed yet. I have only gotten about 3 or 4 hours of sleep in the past 7 days. I am just such a wreck. I am trying to be strong for my baby, but it is so hard. I realize that I must deal with the situation, and so far this board has been the most helpful thing I have found. IT is so amazing to me. 2 weeks ago my life and my daughters life were completely normal. Now I lay here all night watching her and waiting. I am just so scared that she will have another one and I will not be around, or I will be sleeping. Thanks again for the advice from everyone, and anything else that can be added would be wonderful. The strange thing is, I have been a high school teacher for 6 years. I have had numerous students with epilepsy, and I have dealt with them having seizures in my class over the years. But nothing prepares you for watching your own child go through this. It really opens your eyes. Thanks Again.

Eric

 
Old 07-25-2004, 04:57 AM   #6
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Lightbulb Re: Please give advice, my 3 year old, I am worried to death....

hi eric, nice to meet you

i just wanted to tell you i know first ahnd what it is you are going through. when i found out my 5 year old gage, who was 4 at the time had epilepsy i thought it was the end of the world. partly because i had no idea about the disorder. i knew nothing at all. when i first found out i did all the searching i could do on the internet till my eyes bugged out . and then i stumbled upon this board. and i think i have learned more here than anywhere. on this board you get first hand what it is like to have it. i never knew there were so many types and sub types alike.

to give you a little backround......my son started having these terrible temper fits at about 4. kicking, screaming, throwing etc. i had mentioned this to his pediatrician and at the same time she had noticed him blinking real hard. she has seen him since he was born and knew this was not normal for him. she wanted to run all the tests just to make sure. she would have hated herself if something came up later on down the road and she missed it. she ran the bloodwork, MRI, and the EEG. now i just expected them to all come back normal and thought he was ADHD. which was our next step if these came back normal because the symptoms are almost exact in some cases. sure enough the EEG came back with siezure activity. and i feel his pediatrician knew exacly qwhat we were looking at because her son has the exact same thing, so it is a good thing in a sense. she just didnt want to scare me.

we have no history of it in our family, but while i did some research on it, we now believe he has had it since he was about 1 1/2-2 years old. he would have night terrors for a good 1.5 hours every night till he was about 2 1/2. screaming, kicking, non stop every night. we just couldnt put our finger on it as to what happened, or where the siezure activity came from. he had a lot of high fevers which may have been the trigger for him, as a baby due to strep throat, many, many ear infections which he has had tubes put in. but now as we look back things are starting to make sense. all the delayed learning, attitude changes, etc,

he has been on zarontin since the get go. once we found a neuro she had put him on the topomax sprinkles but he could taste them and i couldnt get him to take them. thats a whole nother story... he seemes to be doing good on the zarontin. at first he had some side affect siezures but once it worked its way into his system then he was under control. we recently had a VEEG, which is where they hook you up to a EEG and video tape it all for an extended amout of time, ours was 23 hours long. did it at childrens hospital in pittsburgh. there we were able to find out he mostly has them when he is sleepy, or asleep. we dont see the outward signs of them anymore. i have never experienced the grand mals with him so i am sorry i cant elate on that one for you. now he is doing fine and starting kindergarten in the fall.

you are lucky you have found out while she is at a younger age. it will be easier to adjust with her than at 4-5. but in the same sense you just have to realize that the medicine will take its course and hopefully start working. maybe you could find a support group in your area. contact your local epilepsy foundation thay will be able to direct you where to go. and remember you need to take care of yourself just as much as you are her. it wont help her any for her to have a tired daddy . oh and by the way hoorah to you on that one. dont see that very often. just try, and i know its hard, to run a normal life. it is hard not to hover over to make sure she is ok but in time you will get used to it and im sure getting the most education on it you can will help too. they will know more once the EEG is done. if the activity shows up on the EEG it will help them to determin where it is originating etc. this may put you at ease too. it will help type her form of epilepsy.

have a good day and i hope to hear from you soon. good luck with the EEG on monday.
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Old 07-25-2004, 10:22 AM   #7
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Re: Please give advice, my 3 year old, I am worried to death....

I know this is a very difficult time for you expecially since you seem to be alone in this. Please use Boards like this one and others as a support system for yourself as well as for gaining knowledge about your child's illness and treatments out there, etc. I was an infant when my saga began, but my seizures started initially during sleep.I would strongy encourage you to take her to an Epileptologiat at a Comprehensive Eplepsy Center. That will provide you the most comprehensive care and treatment options. The Specialist we who have mentioned this is a neurolosist who has had additional training at a Comprehensive Epilepsy Center AND has a Certificate on the wall saying he/she has completed a Fellowship in Epilepsy or Neurophysiology. That is what determines whether or not the doc is a real Epilepsy Specialist, Epileptologist, or a doc who happens to like the subject. Finding the accurate details re. her illness as to triggers and posible causitive factors will lead to more specific treatment modalities and that leads to a more stable and safe daily life for both of you. Some cases are dietary in origin such as Gluten Sensitivity etc. Please do a lot of research on the Net. There are many parents going through the same thing as you and beng able to converse with them can be such a help as you can see. Oh, what did the doc choose Topamax? Do keep in mind that the drugs we are given have great tendencies to delay/decrease/hamper the normal growth and development process which is another reason that makes finding the right treatment center so very important. Phoebe

 
Old 07-25-2004, 07:02 PM   #8
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Re: Please give advice, my 3 year old, I am worried to death....

Hi Eric,

Thank you for being more detailed regarding your daughter's type of seizures. That plays a large role in what meds are usually tried first. Are they going to be doing an MRI? They are much more detailed than the regular CAT scans. They cost a little more, but hopefully with a teacher's good insurance ( ) it will help. They are able to locate lesions and any scarring that could be in or on the brain as well. That could be a key factor for your daughter, especially if the seizures started out for no apparent reason.

Phoebe, who posted above me, was the person who had posted here over two years ago, regarding finding an Epileptologist specialist for seizure treatment. It was her post that sent me in search of a specialist for our daughter, which lead them to find her problem (that she had since birth) <<15>> years LATER! Never give up hope! We were amazed! I would definately search out an "Epi", which we refer to them here.

Three centers that I wouldn't bat an eye mentioning are: Children's Hospital of Wisconsin, Milwaukee, Wisconsin (where our Epi is located), Cleveland Clinic, Cleveland Ohio, Dr. Wylie (colleague of our Epi for many years) and the Johns Hopkins Epilepsy Clinic in Baltimore, Maryland. There are others, depending on where you live. Those are the three that I was looking into. There is one in New York (Columbia Prebyterian), Washington State (University of...can't remember off hand), Texas (University of Texas-Houston), UCLA (California) and Minnesota (Mayo Clinic, where our Epi was for awhile). You can also find others by doing a google search under the following: Epileptologist, Comprehensive Epilepsy Clinic or Center, Epilepsy Fellowship...etc. Those are the key words I used. Our Epi is Dr. Mary Zupanc, Director of the Comprehensive Epilepsy Center at Children's Hospital of Southeastern Wisconsin. You can find her online.

Epilepsy has really come to the front of the line in recent years. Specialists are raising awareness and helping the quality of life of many. Our Epi is working with congress to get funding for research and education. Infact, she had a meeting with a congressional committee when Katie was in for surgery. She was gone for a day and flew back. She's something else!

If you have any other questions, don't hesitate. We spent too many years "waiting". Katie was on 6 or 7 meds, and combos of those meds, over those 15 years. I only wish we would have known sooner. I will tell you that for every med that fails, you stand only a 10-15% chance that any "new" med will wor (that is a clinical statistic). Do not stay with a doctor who is complacent and not willing to look at other options because of ego. That is what happened with us, before we found our Epi. They are finding things much more quickly now and are able to help many through surgery. I don't know if that could be your daughter's case, but don't just settle with a CAT scan. Please look into the MRI. The EEG will help as well.

Please keep us posted as you move forward,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 07-25-2004, 10:46 PM   #9
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debvid HB User
Re: Please give advice, my 3 year old, I am worried to death....

Hi Eric

My daughter Bonnie, is 13(14 on the 31st) and was diagnosed when she was 8. I know that she had E since at least 6 years old , probably before. I did not have to witness her having a GM until this year. I know how that made you feel. You can get a lot of info on this board. I have learned so much from Vicky, who posted before me, and Phoebe.

Like others, I stumbled on this board while doing research. This is where I have learned the most. This is where I can "talk" to others who are going through the same thing. That helps a lot.

We are still adjusting Bonnie's meds. They worked fine until last year when hormones kicked in.

There is also an epi at Children's Hospital in New Orleans.

Post any questions you have, someone will be glad to help answer or lead you to a place to find answers.


Debbie

 
Old 07-26-2004, 10:48 AM   #10
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Re: Please give advice, my 3 year old, I am worried to death....

Dear Eric,

You can visit the startthehealing.com website to read the story of Dr. Cynthia Foster and her choice of alternative (natural) medicines for healing her seizures. Should you visit the website, select articles and then choose the "Modern Medicine" article. You can also visit the ********.com website to read the story of an adult Gran Mal Epileptic sufferer who found healing naturally by addressing his vitamin deficiencies (in particular Bcomplex/folic acid). He suffered for 25 years (starting at the age of 13) and found healing by addressing his vitamin/mineral deficiencies. This is something that years of medications could not do. Should you visit that site to read his story, on their homepage is a google search within the site. Type in epilepsy and it will give you a list of the stories within the site. His story is titled "the B Complex cure for epilepsy.

 
Old 07-26-2004, 12:35 PM   #11
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LisaGuthrie HB User
Re: Please give advice, my 3 year old, I am worried to death....

Hi Erik,

Don't think I can add anything to all the great advise of the pps. Just wanted to welcome you and let you know that you are not alone in your journey. I have two children with E. Jake is now 30 mths and been seizing since 10 mths. Jenny is 15 and has only had 2 grand mals.

Make yourself at home. Remember that the only dumd questions are those that are not asked... This board has been a wonderful source of information and comfort to me during this difficult time.

Keep us posted on your little one!

Love and light to all our children

Lisa and kids

 
Old 07-29-2004, 06:24 PM   #12
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pauln HB User
Re: Please give advice, my 3 year old, I am worried to death....

Hello
Well my son has a same story .
He`s 3 years old and about two months ago was his 1st seizure,[3-4min]
then 2 weeks later a2nd ,next day 3rd all of them grand mal .
Since then he`s taking medication all his test normal.
He`s healty othervise.
Right now Im still waching him all day.
He`s still having seizure because the medication is not the right one,
but its much sorter[6-10/day about 1-2 sec].
Since the first one Im scared but I try to handle it and
I taking some pills for that.
I still hope one day it will be just gone this epilepsy.
Here is my advise:Take a first aid &cpr course,you will be feel much better&safer.
Wish you luck anodher worried dad

 
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