still doing well and taking it day by day....

gagcas · 03-09-2004, 09:46 AM

hi everyone. just touching base here a little. we are still doing really good. gage is going to pittsburgh childrens hospital in the begining of may for the veeg and genetic testing. im actually kind of excited about it. it will be a neat experience for him even though he has no idea what is going on with himself. havnt been able to figure out how to tell a 5 yar old he has epilepsy when he cant even say the word...lol. i am REALLY hoping he has one of his tempers or night spells as i call them while we are there so we can catch it all. i was actually thinking maybe i could get him upset enough to make him throw a fit just so they could see what he was doing. he had another night spell last night. his first one in about 2 weeks almost. the tempers seem to be subsiding a little too. im just worried that this genetic testing will bring something out. just for the fact that i dont think the neuro is being completely honest with me as to why she is ordering the tests.

i cant wait till he goes to his ped. on the 23rd so i can see if she can give me any info. but other than that we are doing ok. i register him in the end of april for kindergarten and i am really hoping we can get this figured out before he starts school in the fall so im not disturbing his schooling. everything else is good. just kind of at a hiatus right now.

a happy medium. everyone have a good day and catch you all soon.

LisaGuthrie · 03-09-2004, 10:55 AM

Hey Jennifer,

So glad to hear that things have smoothed out for the 2 of you a bit. Jake is back to his lil seizure self... But, he's having simple particals instead of the complex ones. So much easier for us to watch because he smiles through them rather then his heart stopping, lungs shutting down and his turning blue every 20 minutes.

Jake goes to the epilectologist tomorrow. Genetics will be the major topic of discussion. Daddy spoke to his regular neuro last Monday and he (neuro) told him (daddy) that the last EEG read showed over all generalization rather then a focal like we had seen before. To him this would indicate that his E is genetic. But, he didn't say if that is genetic as in "ha, ha... you have your daddy's hair line" or genetic as in you might have something wrong in the DNA. So we will see what this Dr has to say. I have the number for a pediatric geneticist that I got from a friend whos son was born with Downs a few months back just in case...

We will have to trade notes on this one kiddo.

Jen, have you looked into getting an Individual Education Plan set up for Gage when he enters school? If memory serves me right there are some posts on this topic back in the Oct/Nov time frame on this board that you might want to look at. I know that we will be doing this with Jake and he will start the transition this summer, with additional testing from the Early Intervention Program folks. He will start school at 3 rather then 5 like most children. Just a thought. It might help him to get off to a great start in school.

Hugs and love to you both!

Lisa and kids

gagcas · 03-09-2004, 01:34 PM

hi lisa,
things are good here. you were talking about jake's siezures changing. i think that this is why they are sending gage to pittsburgh. when you say all over generalization and focal, do you mean all over and one part of the brain. thats what happeneed to gage's first 2 EEG's #1- in one part of the brain, #2-all over the brain. youll have to let me know how it goes with the new dr. wow its funny how jake and gage are so much alike in this all but yet so different. i have never heard of the schooling you mentioned but it is something to look into. ill have to see if mine will go back that far and see if i can find it. that would be around the time we found about gage's epilepsy first. if that doesnt work i will just do a search on it. might be worth looking onto. have a good one and let me know how it works out.

LisaGuthrie · 03-09-2004, 03:03 PM

Hi Jennifer,

I threw out a new thread about the school issue. I hope that the parents who were talking about it are still around. I haven't seen anything from Lindy in some time now and I know she was the main source of knowledge on this one.

Yes, to your question about generalization. When he first started seizing his EEG (and seizure activity) showed as being or at least starting in one focused part of the brain. On this last one, it showed as just starting all over at once. We will have more detail tomorrow.

Jen, how old was Gage when he started to talk. It's just killing me inside that Jake isn't speaking. He will gain little baby words, Mom mom, Daddad and I know he's said dlink (for drink) a couple of times. Then the seizures start and they (his little words) go away as quick as they came. He still doesn't act like he understand anything said to him. Does not follow commands at all - "Take the ball to Daddy", "Do you want a drink?". "Wave by-by to Grandma"! ~Just wondering. Jake is nearly 27 months now...

I'll let you know how the appt goes tomorrow.

Talk soon,

Lisa and kids

gagcas · 03-09-2004, 07:43 PM

hi lisa,

gage started talking around 1 and a half - 2. he had alot of trouble with his ears when he was young. god he must have had 6-7 ear infections before he was 1. he had tubes put in when he was almost 2. we always put his slow speech development to his trouble with his ears. thought he wasnt hearing us talk very well and him not picking it up. now i am thinking it might have been from this and he has had epilepsy all this time. he was delayed in alot of other stuff too. his learning, speech, milestones. i think the only thing he did early was walk. he did that around his first b-day. i couldnt even get him potty trained till the begining of last summer.and he was 4 1/2 then.

have the dr. given you anything as too why jake is so delayed or is that what the other tests are for. god i hope it is nothing too serious. it sounds like his siezures are exactly what gage is going through. you will definatly have to let me know whatb they say. im glad i happen to stumble on to this board. makes you feel better knowing there are other people out there that are going through exactly what you are and have some piece of mind knowing you can come here and maybe find some answers to whats going on with out ahving to see a dr. to do. good luck with the appt tommorow and take care of yourself.