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Old 12-07-2005, 10:30 PM   #1
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Five year old newly diagnosed with partial complex seizure disorder

My daughter Hannah who is five was newly diagnosed with partial(focal) complex seizure disorder. My husband and I are still in shock. It came on so suddenly with our practiacally healthy girl and as of yet has an unknown cause. She is on Trileptal. Anyone with some experiences or words of advise to share.

 
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Old 12-08-2005, 07:20 AM   #2
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Re: Five year old newly diagnosed with partial complex seizure disorder

Hi Hannahsmom, I am so sorry your daughter has started having seizures. My son started having seizures at a young age but we did not recognize them until he was 7. Most of his were in sleep.

It helped us to keep a journal of seizures, when they occur, what happened before, during and after as well as anything we saw that could have been a trigger. I also wrote down any things I felt the medication was causing (extra tired, behavior change, trouble learning that he did not have before, dose changes etc)....

I found I was so overwhelmed at the neuro apts I had to write down questions ahead so I would not forget and I wrote the answers down as well. I have a pretty good memory but found I did not remember things as well with the stress of it all.

I really hope she does well on this medication and it controlls her seizures.
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Old 12-08-2005, 08:14 AM   #3
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Re: Five year old newly diagnosed with partial complex seizure disorder

Hi and welcome to the boards!

Our daughter was diagnosed at the age of 8 months and is soon to be 18. Her seizures developed after a prolonged febrile (high fever) seizure that caused scarring to brain tissue. It wasn't until the last 2 years that we were able to pinpoint where the seizures were coming from and why. Advances in technology made that possible.

I will tell you, anyone who is diagnosed NOW vs 15 years ago is FAR ahead of the game. More meds and tests available. We never thought we would know the cause of her seizures. MRIs and VEEGs have made a huge difference. One of Katie's MRIs from as early as 4 years ago showed nothing, and the most recent one 2 years ago showed something for the first time. Just like digital cameras, they keep getting better.

Research on the internet, contact your local Epilepsy Foundation, get info through your neurologist and their support staff. If you are near a Comprehensive Epilepsy Clinic, contact them, if insurance permits. I will tell you that Partial Complex seizures (or Complex Partial) are one of the more difficult to control seizure types. Those are what Katie had. She was on the same med (Tegretol) for 12 years and it just stopped working. In the next 3 years (up to age 15 1/2) she was on 6 additional meds and combos of those meds. It was a rough time. Puberty also creates problems for girls with E. Many experience an increase in seizure activity, as was the case with Katie.

I don't at all intend to frighten you, since this is all new. But I also don't think sugar coating is good either. You need to be in this with eyes wide open, know what to expect and have the most info you can get. There are a number of Mom's on the boards here, if you chose to stay and ask for guidance. We have all been there for each other. Ginny, Julie, Debbie, Lisa, Betty, myself and others.

Learn first aid for seizures, learn about secondary onset (Grand Mal), learn about the different meds and side affects, learn about the social issues, learning issues and keep a detailed journal as Ginny mentioned. Date, time, length of seizure, what happened during the seizure (right hand moved, eyes went to the left, picked at clothes, lips smacked, lips blue, pale, left leg stiff, incontinence, sweaty, etc). For 16 years I wore a watch with a second hand to track the length of a seizure. Also make comments about what happened after her seizure. Did she sleep, answer questions quickly/not quickly, go right back to playing or doing what she was doing, throw up, complain of headache, etc.

What tests were done to diagnose Hannah? What type of doctor are you seeing?

We'll be here if you come back, and welcome...blessings to Hannah
Vicki
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Old 12-08-2005, 08:21 AM   #4
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Re: Five year old newly diagnosed with partial complex seizure disorder

PS Hannahsmom!

Please remember, first and foremost, YOU are your child's advocate! If you have concerns about something VOICE your opinion! Your child has no voice, only YOU!

And, doctors DO make mistakes. There are many of us on the boards here who have experienced it. If your doctor is not listening, MOVE on. Don't waste valuable time. Doctors work with what they know. And there are many other doctors out there that DO know more, about Epilepsy specifically.

They are called EPILEPTOLOGISTS. That is the type of doc we have been with for the last 3 years. Katie has since had surgery and has been seizure free for 18 months (yesterday)! The doc does make a difference.

Vicki
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Old 12-08-2005, 03:31 PM   #5
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Re: Five year old newly diagnosed with partial complex seizure disorder

Thanks Ethan. The moment I got home, my husband got on the net and looked up all the info he could find. I am hoping and praying that this was her only episode, but as of yet there is no identifiable cause to correct. I've always been on the outside looking in and now being an outsider wouldn't be such a bad thing Thank you again.

 
Old 12-08-2005, 03:38 PM   #6
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Re: Five year old newly diagnosed with partial complex seizure disorder

Thanks! We have immediately started educating ourselves on epilepsy and are hoping that it was a one and only episode. I can't imagine that it gets any easier. Her only episode has aged me by 20 years. You just never expect to see your child given rescue breathing by a ventilator or being called critical. I am a nurse in labor and delivery, but it sure didn't prepare me for what Hannah had in store for me last Sunday. Sometimes ignorance is bliss Thanks again for your words of advice. I hope that your son is doing well.

 
Old 12-08-2005, 03:48 PM   #7
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Re: Five year old newly diagnosed with partial complex seizure disorder

Thanks Vicki. I would rather someone tell me like it is than to go into this thing blindly. Hannah is seeing a neurologist and she had a CT scan, drug toxicity, cbc, electrolytes, and will be having an MRI on Monday. I have printout on first aid for seizures that I am giving to Hannah's grandparents and her parent's day out teachers, so that they are educated on caring for this, in case this becomes chronic. I am a nurse so I have had cpr, hopefully I won't need to use it. I just worry about Hannah aspirating in the middle of the night, since the last episode she vomited and was unresponsive for over 8 hours(partly due to medication give to her to keep her from pulling the tube out that was assisting in her ventilation. Thank you again for replying and I will talk with you soon

 
Old 12-10-2005, 05:35 PM   #8
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Re: Five year old newly diagnosed with partial complex seizure disorder

Hi Hannahsmom,

That is when I decided to learn CPR, right after Katie was diagnosed. I think it is a good thing for all parents to learn. And one of those things you hope to never have to use. I never used it on Katie, but while at a park with some other moms, one of their children started choking on a grape and I did the Heimlich on the little one. I think she was 2 or 3 at the time. I know they aren't the same, but one of those things it can't hurt to know.

Being a nurse you know the possibilities. You are a detailed person and know what to look for with breathing, aspiration, length of seizure etc. The journal I kept for all those years helped pinpoint where Katie's seizures were coming from. She had the same movements all those years. Eyes to the right, right hand moved, etc. This was an indication that her seizures were from the left. That is where the origin was found, in the left temporal lobe. More specifically, (after more testing and a subdural strip placement surgery) the left hippocampus.

I don't know what to tell you about the EEG. Only that Katie had numerous EEGs over the years and many came back "clear". They can sort of be false positives. Katie CLEARLY was having seizures, but some of the EEGs showed no activity. That meant the meds were doing their job and the brain wasn't irritated at that particular point in time. There are many people on the boards here who have had the same experiences with EEGs.

Please come back to let us know how the MRI went...blessings to Hannah...

Vicki
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Old 12-12-2005, 10:08 AM   #9
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Re: Five year old newly diagnosed with partial complex seizure disorder

Hey Vicki,

Thanks for your reply. Hannah's MRI has been rescheduled in two weeks. Hannah's activity was also in left portion of the brain and her activity was observed in her right hand. I appreciate your inside view from a mom's perspective

 
Old 12-12-2005, 12:23 PM   #10
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Re: Five year old newly diagnosed with partial complex seizure disorder

Hi Brandy,

We'll wait to hear from you...all our best!

Vicki
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Old 12-12-2005, 01:10 PM   #11
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Re: Five year old newly diagnosed with partial complex seizure disorder

Hi so sorry to hear about your child it is very hard when it happens to your baby,my daughter has E she started having fits when she was 3 year old we were on the beach throwing stones in the water when her eyes rolled back,she started fitting this was her first one the paramedics had to resusate her as she stopped breathing she was still fitting at the hospital for 3/4 an hour when they had to give her valium up her back passage to stop her fitting as a mother i couldnt watch so her dad was with her untill the doctors asked him to leave as they were finding it hard to stop her fitting.she was put on sodium volprate (epilem) she never had another fit till the following year when same happened couldnt stop her fitting and was once again given valium,she was diagnoised with photosensative epilepsey causing grandmal,and was suseptable to ones were she cannt come out of them herself.i think it was because she was 10 weeks premature and on life support,She is now 13 years old her last fit was when she was 11 years old she has now come off medication,she is doing well she plays keyboard and guitar also is very good swimmer,and loves dance and can now go to discos were as before the lighting would cause fits,As just the sun through the car window would cause her to have a warning her warning was colours in her eyes.So as we nearly lost her on a few occasions there is light at the end of the tunnel her EEG does show abnormal but up to now no fits,

 
Old 12-12-2005, 06:15 PM   #12
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Re: Five year old newly diagnosed with partial complex seizure disorder

Thanks again Vicki!

 
Old 12-12-2005, 06:19 PM   #13
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Re: Five year old newly diagnosed with partial complex seizure disorder

Thanks Susie! I hope that this was the one and only episode that Hannah every has to endure. We almost lost Hannah too. I don't think that her neuro actually understands how close she was. I asked him if my husband should learn cpr and he said that he wouldn't need it. She went into an agonal breathing pattern before she had her first(possibly second) visable seizure. Hannah is on Trileptal and hopefully it will control them.

 
Old 12-13-2005, 03:28 AM   #14
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Re: Five year old newly diagnosed with partial complex seizure disorder

HI i do hope so. I was quite lucky as her dad is a fireman and done first aid,if i had been alone dont know what i would have done, Saying that there wasnt much my husband could do as she neede diasipan so stop her fitting, After that the doctors gave him some just in case.as we were going to spain on holiday.The doctors were very good and worried as her right side was paralised for 12 hours and her speach was not right as far as we couldnt make out what she was saying very slured.she as no brain damage due to this as MRI as been done,I think she had her last fit due to her developing into a young women but she has been great since,I have never stopped her doing anything she wants she has just got medal for JUJITSU and can throw men around including her dad helps in self defence.she was lucky as she had warnings before she went into one so could sit down unlike my nephew who is 18 years now he just falls and has hurt himself badley before.He as tryed all medications and special diets none help him,And doctors are unable to diagnoise which one he has due to having a few differant types but none shown up on EEG unlike chelsea.But the doctors have said not all will most have not got photosensative epilepsey only 5% with epilepsey have this problem with flicking lights. I do hope your little girl can keep it under control with medication and one day without it,My daughter has her life back now and all the weight due to medication has gone she looks great.And since off medication her school work as improved as it did slow her down.

 
Old 12-14-2005, 06:08 PM   #15
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Re: Five year old newly diagnosed with partial complex seizure disorder

I don't know if I can name the specific source, but there's an on-line book store that also sells used books, often as low as a few cents plus postage (I've gotten several, and never had a problem), and it's been a great way to get information without going broke. Think large South American river.....

 
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