hi everyone, just thought i would touch base a little - Epilepsy Message Board

gagcas · 07-10-2004, 05:54 AM

hi all,

i havnt posted in a while, and im sorry. been a busy summer so far. just thought i would give you a quick update on how gage is doing and all.

he has been fairly decent actually. no siezure activity that i can see. the only problem i am having with him is i cant get him to take the zarontin aymore. he is supposed to be taking 2 1/2 tsp twice a day and i am lucky if ican get him to take 1 full tsp at one time. i was putting it in his drink but he can taste it and i end up wasting that dose becasue he wont drink it. they said to just put in a dropper and put it down the side of his mouth, he has no choice but t swollow it, but he ends up gagging and spitting it back up. i am supposed to ha blood work done on him to check the levels of the medication in him but i cant get a full days worth in him. they said to get it done in the morning before his dose but the prior days med level isnt what he should have in him. i could use any info or help on this one. i have a very stubborn 5 yer old on my hands and i cant get him to undertsand why he needs to take it everyday twice a day, let alone the whole epilesy deal.

other than that he has been really well. no temper fits and his whole demeanor has been very good. wierd since he doesnt have all the meds in him. been sleeping good, playing and im all excited because he starts kindergarten the 31st of august, and i feel he will do really well. cassie is at her typical age. she will be 2 the 29th. we have had some problems with her waking up in the night and screaming and throwing things for a good 2 hours straight. which has me worried because its the came thing gage did when he was her age. i have resorted to takingher for a drive at 3 in the am to calm her down. she fights going to bed and i have tried not giving her a nap int eh day because i thought her sleeping schedule was messed up. but hence she was up and fussing last night. first thoguht into my head was oh my lord she is doing what gage did is this "E"? now here is the question--> what are the chances of this being hereditary, event hoguht there is no signs of it in the family, and it being passed on from gage to cassie. i may be just an over protective mom and a worry wart, but i really have beent hinking in theback of my head of the chances she is having the same things he is and now i will hvae 2 kids with epilepsy. she has her 2 year check up the 23rd i think so i will be asking the dr. about it if she is still doing it. who knows i could just be blowing it all out of proportion and it could just come with the territory of terrible two's.

anyway i have been catching up on my reading of the posts and i am so glad to ehar everyone is doing well and things are good. just a quick note to Katie.....you go girl. may not know you, but feel i should and your doing great. everyone else........

dont mind the typo's i tried to fix them and it ended up rewriting over what i just got done typing. really need a spellcheck in this thing for us REALLY bad typers.

tkdmom96 · 07-10-2004, 10:03 AM

Hey Jen,

Haven't seen you in awhile! Thanks for the comment to Katie, I'll have her read it later!

It couldn't hurt to ask the doc about Cassie. When we were getting ready to have Andrew we asked the Neuro about another child with E, and with no apparent history in the family, he said a 17% chance we could have another child with E. Especially since we didn't know what caused her E. Now, that was 15 years ago. Their thoughts on that may have changed. Just like the new ways of dealing with E patients.

Glad to hear Gage is doing well! Did you check with the Neuro about a chewable tablet form of med? I know Tegretol has one, but that's all that Katie used. I don't know if there are others.

I have to scoot, ton of stuff to do today...we finally have some REAL summer weather today! Suppose to be NEAR 80! We have had a weird summer. I told the kids it will be hotter than h*** when they go back to school, watch!

Take care and thanks again for being there for us!

Vicki

kayakmom · 07-10-2004, 10:13 AM

(((Jennifer)))

At the 2 year check up ask the Pede if Melatonin is ok to help with the sleep problems. Sam had night terrors that I now wonder if they were seizures or night terrors. His epilepsy did not become clear until age 7, but now I know he was having seizures much earlier.

The percentage of a sibling also having epilepsy is only around 2 %. Slightly higher if there is a genetic link. They are still studying it all and do not know how much genetics plays a part, totally. Some syndromes have higher chances. We have 2 with epilepsy now and a great uncle who had it, but we have been told it is not genetic....sigh. So many questions!

I had issues with meds when Sam was younger, he would spit it out, hide half dissolved tylenol etc....but these were not seizure meds. Usually antibiotics for ear infections etc....

5 is big enough to explain that he has to. I know you can tell him it can be done the easy way or the hard way, his choice. I have had to straddle him and put it in his cheeks.....Maybe if you try a reward? If you take it then you get.....what ever bribes work....even a BIG sticker, and a sticker for so many days adds up to a prize (dollar store)

Hang in there....

gagcas · 07-10-2004, 05:50 PM

thanks girls for the input. i plan on calling gage's dr. on monday to see about med change or some other form of it that may be easier to take. ill have to ask about the chewable in particular. that may work for him because he is the same way. wont take tylonol, allergy meds etc. and its funny you mention the antibiotic. that pink liquid is the ONLY one he will take. lol. i know i may be just over reacting with this stuff with cassie but i was so scared about going thru the night terrors again i had all sorts of stuff going around. we are now doing a rewards weekly calender for things like brushing teeth and getting dressed and even though we are only on week one maybe i can add the med one on to it and see how it goes. is melatonin something over the counter or script?

vicki, i hear you on the weather. we are in NW PA and it has been more of a fall and spring mix than summer. i think we have hit over 80 maybe 10 times if that. i have been in socks and blankets to sleep thats how chilly the nights are. so i hope you enjoyed the day and got done what you needed to. talk at you soon and i wont be such a stranger this time i promise. , )

tkdmom96 · 07-11-2004, 10:14 PM

Hi Jen,

I'm headed off to bed but wanted to share that we hit 81 today! And we have a few more 80's ahead for the rest of the week. Only problem, I'm whiter than this space I'm typing on! Pastey legs! I won't look too good in my shorts this week, oh shoot, I actually have to shave! Oh well. Who do I have to impress anyway? Hahahaha!

Take care!
Vicki