new here...questions! - Epilepsy Message Board

luvmybaby · 02-01-2004, 12:22 PM

My 14 month old son had a seizure on Wednesday. The MRI showed nothing of concern...but we are still waiting for the EEG. (They are having problems getting him scheduled before his neurology appt.) I'm really nervous for this test. What should I expect?

Also, his Dr. mentioned partial complex seizures. I have no idea what that is. We're really scared. ANY info. on this or what to expect at the neurology/EEG appointments would be really helpful. THank you.

crystalw · 02-02-2004, 06:00 AM

Quote:

Originally Posted by luvmybaby

My 14 month old son had a seizure on Wednesday. The MRI showed nothing of concern...but we are still waiting for the EEG. (They are having problems getting him scheduled before his neurology appt.) I'm really nervous for this test. What should I expect?

Also, his Dr. mentioned partial complex seizures. I have no idea what that is. We're really scared. ANY info. on this or what to expect at the neurology/EEG appointments would be really helpful. THank you.

Are waiting to get the EEG done? If so, I'm not sure if they do them differently with children then with adults. It might be hard to get him to lie still with out medication or something so I don't think I can answer that question. For an adult they take little sticky circle with what looks like snaps on them and sticks them to your scalp and I believe if I remember there is one on your chest. They have you lay down and rest for awhile. Then, they do other tests with flashing lights (like a strobe), a clicking noise, and they ask you to breath rapidly (like to hyper-ventilate). Then, you go home and get the report from your Doctor.

When you go to the Neurologist, they are usually very busy and hopefully you will get a good one. (Insist that they explain everything to you, I was so dumbfounded....not expecting what I heard I didn't ask anything.) The neuro was 45 min behind and didn't explain anything. She told me I had a seizure disorder and to take this medicine. That was it! (Obviously, I left her!)

Anyway, I have complex partial seizures. They aren't the shaking kind they are more the staring kind. They seem to be triggered by different things for different people. Mine seem to be some hormonal, some Bright flashing lights, although I was stiring a colorful salad and that did it one day. It seems difficult to medicate.

I'm fairly new, and no expert, this is what I know. I hope you get some veterian input. Crystal

gagcas · 02-02-2004, 12:35 PM

Hi there, im jen. my son will be 5 this month. a little bit older than yours but a child just the same. he was diagnosed in november with epilepsy, of the same kind your dr. mentioned. believe me.... i felt the same way you did. had no idea what was going on. had your child had any other out of the ordinry behaviors other than the siezure and was it his first one. was just curious as to why the dr. mentioned the partial siezures.
ill give you a little backround on my story and it may be able to help you understand yourself a little beter. gage was having horrible temper fits and he couldnt sit still for very long, was blinking his eyes to where i thought he may need glasses. he used to have night terrors when he was 1 1/2-amlost 3 that would last hour and half(we now realize it was from his disorder). i finally went to hids dr. becuase i couldnt take the tempers and screaming matches anymore. he would pick up what ever was closest and just whip it across the room. i was at my wits end and getting angry to the piont if i didnt walk away i waould hurt him because my patience was thin. he has a 1 1/2 year old sister i had to worry about too. she ordered an MRI(which was normal), and then an EEG just to make sure there wasnt anything going on. thats when we found out he had siezure activity. here i was just thinking he was getting ADHD, because the symptoms a really close. i thought my world just fell apart when i heard that. we went to the neurologist and his activity was bad. they put him on meds and we have had a better time with it.
crystal was right about the EEG. gage had to be sleep deprived for his. its easier to do if they are sleeping. we were walkign around walmart at 3 in the morning.

just to keep him awake. lol. some sound advice i actually got off of this board is to keep a journal about anything out of the ordianry, and to write down any questions you may ahve. i know you may think ill remember, but when you get in tehre and they start explaining you forget. i must have had 25 questions about this. his reg. dr. put him on antiepileptic meds before the neuro saw him so i did some searching on the net. i knew a little before i saw the neuro which helped. but dont be afraid to ask. if its a good neuro he will listen and answer every one of them. and another piont.... stay with this board. it has helped me tramendosly and i ahve laerned alot. its like having a shoulder to cry on with out the phone call. they all are wonderful here and i wish you the best. now that i ahve a book for you to read im gonna get going. i hope i have helped in some way. keep in touch.

jen

LisaGuthrie · 02-04-2004, 01:11 PM

Hi Mom,

My name is Lisa and I have 2 seizure kids. Jenny 15 and Jake 2.

Let me start by sharing a couple of things with you.

You have every right to be scared. I thought Jake was dying in my arms during his first seizure. And it may take you months and tons of seizures to get past that fear (although I hope you never see another one!)

You are doing the right thing by seeking answers from someone other then the Drs. They are not Gods! They do not have all the answers - don't trust one that pretends that she/he does...

DO NOT waist time and energy blaming yourself, your child's father, grandparents, God - Whoever!

Realize that the Drs may or may not be able to provide you with the answer to "Why?" your son seized. And as strange as it sounds you and your son are actually better off if this is the case. The medical term for this is "Idiopathic - A disease without a know cause" and this is better then finding out about a syndrom of some sort.

Keep a journal. Details, details, details... at first any new foods (try and think if he had anything new in the days prior to his seizure, changes in sleep cycles, BMs, fevers. If he seizes again note the following: was his eyes directed in a certain way (Jake's are always up and to the right), any body movement (jerks, twitches, rapid blinking etc), how long did it last - COUNT while it's going on all he will hear and register is mommy talking to him - I always count out loud so Jake hears my voice. Write all your questions in the journal as well - you'll be taking it to the Dr. This record could be your saving grace if you find a pattern but the only way to find a pattern is to keep a journal.

If the neuro tries to put him on Dilantin DON"T allow it! There are other drugs that are less hard on children. Jake went toxic 3 times on that stupid drug, lowered liver counts, lowered white blood cell counts and just alround DRUGGED! We lost close to a year of development on it.

Oh Gosh Mom, my boss is looking for me. I'll have to finish in a bit...

Love and light -

Know you are in my thoughts and prayers!

Jennifer - Girl good to see your still here! Thanks for talking to the newest member of the "E" Mommas Club!

Light

Lisa and kids

taylin12 · 02-05-2004, 01:17 PM

Hi- My 3 year old daughter, Lindsey-Grace, was diagnosed with complex partials when she was 2. She is currently taking tegretol. It has worked great for her. She also has stiffening of her body when she has a seizure. She is very emotional. We have had 4 normal EEGs. It is really hard keeping them awake for the sleep deprived EEG. We did whatever it took

to keep her up for at least 12 hours prior to the testing. Good luck with everything and your family is in our prayers.