hi all, :wave:

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........ :wave: :D :wave:

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. :D

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

(((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....

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. , )

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! :D

Take care!
Vicki

:D :D ;) :D :D

lol vicki,

i hear you on that one. i have been tanning and i still bet you have more colore than me. lol. well at least you got to head outdoors for a bit. we have nothing but rain here all morning. things are going good. just waitnig of rthe dr. office to open up so ican call about gage. will post latert oday, because it will take them all day to call back. later :wave:

hi all,

well i got a hold of the dr. the other day. his regular ped. was out for the week. goodness she gets alot of vacations. lol. anyway they ended up calling the hospital pharmacy because the other dr.s in the practice really didnt know.

they said i could do 1 tsp. 5 times a day, because i can get him to do at least that much, and if i had to i could hide that much. they will keep his chart out for the regular pediatricin to see when she comes back in on monday, and if she feels that isnt ok then maybe we can try something else. like the tegretol chewables, but i think if i can eep him at this then we should be ok. once i have the full amount in him for a few days then we can go ahead and do the bloodwork.

so thanks for the help and ideas everyone. cassie has her appointment next week so ill have to ask about the link then, but i think it was just being an over worried mother. her allergies have kicked in, and the nose running which makes her cough, so she has been on the cough meds so at least she is sleeping thru the night. they gave her some good stuff. :D lol. still fights to go to bed but i believe its all just the age. gotta live kids huh? ;)

well,

saw gage's regular pediatrician yesterday while i was in for cassie's 2 year check up. she said if the 5 tsp. a day works instead of the 2.5 tsp. twice a day works than go for it. and it seems to be working for him to. he cant really taste it at all so i know he is getting it. im gonna keep him on this a few days and then go get the bloodwork done for him. so hopefully this is working. you can tell he has had to adjust to the full amount now. i can tell by his demeanor etc. its wierd..... what a little adjustment will do.

she also said cassie may just be getting the seperation anxiety. she wants to see her back in october to see how she is doing. the dr. understands my worry just because we went through it will gage, but this was before we found out about the siezure activity.

all in all we have been doing ok though. school starts in one month and 10 days....im not counting, really i'm not. :D. so just a little longer. i have a feeling it will all change once he hits school. talk at you all soon. and take care ok.

Hey Jen... I'm glad to hear things are going good for you guys!!! I'm not counting either :D My youngest starts this year and I will have a empty nest, what will I do???? ( besides throw out every broken toy I can find :p :p :p )

So are you feeling better about Cassie?

Take care :wave:
Lisa

HEY Jen,

DITTO! Glad to hear things are going well! And do whatcha gotta do...to sneek that med on in... ;)

STOP COUNTING! We haven't even begun to have a summer yet! The only way I sort of know it's summer is by the gosh awful mosquito population!

.............. :) ................... :) ..................... :) ........................ :) .........

Still don't know why God created them...except for bat food!

Vicki

p.s. Cassie may have a change coming again with Gage headed off to school, it will give you more "girl" time!

p.s. Lisa T, trust me, the time STILL goes by quickly when they're gone! All of a sudden the bus pulls up and you're like "I didn't get a dog-gone thing done today..." Except eat a bagfull of OREOS while watching General Hospital.....:D

Hey Jen,

Wanted to see how Gage and Cassie were doing?

...and we are down to 2 days before school starts in our area!

Jenny will be a Sophamore! I can't believe that one, it feels like yesterday that I walked her into the K5 room and sat at her side for all of 2 minutes before she dismissed me... I sat in the parking lot and cried like a baby for at least 15 minutes. At the time I thought she was going to be my last lil one to start school! BUT God had a different journey planned for Momma G! ;)

Boy how time flies when you're loven life!

Talk soon!

Love and light,

Lisa and kids

hi lisa,

thanks for the touch base. the kids are both doing good. we seem to be doing well with the 5 tsp. a day for gage, because he cant taste them and doesnt even know he is taking it. we have been going through another bout of his wetting the bed again. was 4 nights in a row last week. im just chalking it up to him getting used to the full amount of meds again. it will just take some time and a lot of laundry soap...:) i have been noticing a temperment change in him. reverting back to the babyish style again.. here we go round three...:) cassie must have been just the age thing. she is on allergie meds before bed and doing well. still not taking naps but thats ok i guess.

wow your kids are starting school already!!!!!.....when are they finished. gage's first day is the 31st of this month. 30 more days...lol. we have a picnic at my work tomorrow at waldameer....(duh..like you know where im talking about)lol, anyway it is a little mini ride park about the size of a fair. lots of rides for them to go on. will be fun. talk to you all soon. take care.

Hi Sweetie,

Glad that things with Cassie are going your way! Would hate to think of another Momma with EX2! It's a trip keeping everyone straight!

Jen, have you ever had Gage tested to dairy allergies? So much of the research I'm doing right now on Autism talks about language delays as well as other developmental issues being related to dairy reactions. We are in the process of reworking the Keto diet to be dairy free to see if we can combat the Autistic behaviors we are seeing in Jake. Why I wonder is I remember you writing about his having an ear infection and taking meds for it. This can be caused by the same allergy? Jake's dietician seems to think that even his seizures could be related to milk and other dairy... I know sweetie, it may be a stretch, but something to think about and maybe ask your pede if you could get checked.

As far as school; Jenny got out on May 28! Very short break! I remember when we got out from the end of May to the August!

Enjoy your picnic at Waldameer! Sounds like a blast!

Hugs to you all,

Lisa and kids

Hi Jen~

Just wanted to pop in and send good wishes Gage's way! We are praying for Jake and Gage daily!

I saw that Lisa mentioned dairy...Gluten would be another to check. Also preservatives can be an irritant, MSG and sulfites (the junk in hot dogs and lunch meat).

We try to do our best don't we? Keeping our chins up, up, up! Also helps get rid of the ugly extra chin! :D So let's hear it for dual purpose! :bouncing:

I need to hit the hay...getting a little corny...take care and my best to you as always!!!

Vicki