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PLEASE HELP US IM RUNNING OUT OF HOPES!
Tue, 03/29/2005 - 09:30WELL I DONT KNOW WHERE TO START BUT HERE I GO I HAVE A SON THAT IS 12 NOW BUT AT AGE 3MONTHS PR SO WE STARTED HAVING SEZURES THAT SAID HE WAS APRATING ON MILK WE WAS SENT TO MEMPHIS SAID HE PROBALY WOULN'T HAVE ANYMORE THEN THEY SENT US HOME WEEKS LATER HE STARTED AGIN BACK TO LEBONEUR WE WENT THIS TIME WE CAME HOME ON PHENOBARBITAL...WE STAYED ON THIS TILL HE STARTED SCHOOL THEN WENT ON TEGRETOL..WHICH WE ARE CURRENTLY TAKING NOW..HE TAKES 400G.>>MORING 200G LUNCH>AND 400G NITE FOR THE FIRST TIME WE SEEN A BAD ONE HE STARED AROUND ROOM SLOBERING AND HIS EYES ROLLING..EYES OPEN BUT NO RESPONSIVE..CALLED ABULANCE WE WENT THEY SAID THAT WAS NORMAL BUT NOT TO US..WE SEE OR UNTIL THEN HAD ONLY SEEN THESE OR SMALL ONES WE CALLL THEM COMPRE TO THE THING HE HAD THE OTHER DAY..AND THEN ONE THE OTHER NITE.THE ONES WE ARE USE TO IS THE ONES WHERE HE SQWENCHES EYES AND FACE AND TURNS RED IN FACE AND MOVES HIS HANDS OR THEY GET TITE AND SOMETIMES HE WILL NEARLY THROW UP BUT DONT ALTHOUGH HE WILL SOMETIMES..WE ARE NEW TO THE OTHER 2 BUT IM ALITTLE WORRIED BECAUSE HES BEEN HAVING THEM LIKE EVERYOTHER WEEK AND HE SOMETIMES WILL HAVE SEVERAL..HOURS APART FOR LIKE A DAY THEN WONT HAVE ANY FOR WEEKS AGIN..BUT STILL ..I WORRY BECAUSE YALL ARE>>>>>>>>GONNA THINK ME AND MY HUSBAND ARE CRAZY BUT WE KEEP ALOG OF HIS SEZURES WHEN WHERE WHAT TIME AND WHAT HE DID WHEN HE HAD IT..AND THE LAST FEW MONTHS ALOT OF THEM ARE WHEN A COLD FRONT COMES THREW IM SERIOUS I THINK THE COLD FRONTS MAKE HIM HAVE THEM OR WEATHER IS WHAT I MEAN....OR IT MAKES THEM WORSE OR SOMETHING LIKE THAT..HES WEIGH 170 AND 12 YRS OLD HE DONT HAVE MANY FREINDS WE ARE LOST AND I CRY ALOTI WANT HIM TO BE A BIG BOY ITS HARD TO LET GO YA KNOW THEY MAKE FUN OF HIM AND IT MAKES ME SO MAD..SHOULD I BE LIKE THIS OR AM I TAKING IT TO FAR..HE MY BABY AND WILL ALWAYS BE ..MAYBE THE MEDICINE AINT WORKING LIKE IT SHOULD..HE HAS ARUAS HE KNOWS THAT HE IS GONNA HAVE ONE MOST OF TIME..WHEN HE WAS LITTLE HE USE TO JUST THROW UP FOR NO REASON I THINK HE WAS HAVING SOME KIND THEN TO >>>>PLEASE IS YOU CAN HELP ME LET ME KNOW..
Comments
RE: PLEASE HELP US IM RUNNING OUT OF HOPES!
Submitted by Kristi on Tue, 2005-03-01 - 11:24
Hi, Your not Crazy!!!!
My name is Kristi and I have a son who is 15 with complex partial seizures. Meds are terrible but don't ever give up. Keep telling your son you will never give up and either can he! You are doing right by writing down everything. I do also. I also watch everthing he eats and drinks. My 14yr old son has been 5 yrs seizure free. The keto genic diet helped him not meds. Sorry to say it didn't work on my 15 yr old But, I'll never give up. Vitamins are very important also. Because the meds are wicked they try and destroy the body so we fight back with vitamins. I always listen if you need someone to talk to.
God Bless
Kristi
Hi, Your not Crazy!!!!
My name is Kristi and I have a son who is 15 with complex partial seizures. Meds are terrible but don't ever give up. Keep telling your son you will never give up and either can he! You are doing right by writing down everything. I do also. I also watch everthing he eats and drinks. My 14yr old son has been 5 yrs seizure free. The keto genic diet helped him not meds. Sorry to say it didn't work on my 15 yr old But, I'll never give up. Vitamins are very important also. Because the meds are wicked they try and destroy the body so we fight back with vitamins. I always listen if you need someone to talk to.
God Bless
Kristi
RE: PLEASE HELP US IM RUNNING OUT OF HOPES!
Submitted by cooljules on Tue, 2005-03-01 - 13:49
Hi there,
You are doing the right thing by keeping a note of your sons seizures because it is very important that you can show the doctors a note of all the seizures he has been taking. Children deal with epilepsy alot of the time better than adults do, i can relate to losing friends because i lost alot of friends because i have epilepsy and yes it was at times hard but children are amazing as to how brill they cope. I can relate to alot of what you are saying because my son is being checked just now for epilepsy and yes it is hard to show that i am strong psycologically. Please if you want to talk then contact me my e-mail is juliehamilton31@hotmail.com.
take care
julie
Hi there,
You are doing the right thing by keeping a note of your sons seizures because it is very important that you can show the doctors a note of all the seizures he has been taking. Children deal with epilepsy alot of the time better than adults do, i can relate to losing friends because i lost alot of friends because i have epilepsy and yes it was at times hard but children are amazing as to how brill they cope. I can relate to alot of what you are saying because my son is being checked just now for epilepsy and yes it is hard to show that i am strong psycologically. Please if you want to talk then contact me my e-mail is juliehamilton31@hotmail.com.
take care
julie
RE: PLEASE HELP US IM RUNNING OUT OF HOPES!
Submitted by tracul66 on Tue, 2005-03-01 - 10:20
Hi "Kimmie"/I'm Tracey: & just like everyone else says,,,"NO" you're NOT crazy,,(the ones that 'can't' accept us the way we are/& are 'sick-in-the-head' ) are the ones that are 'Crazy',,Right,,,
Anyway,,,Keep standing by your 'Son' & tell him/get him in with other's that suffer "Epilepsy",,& they'll also tell him 'He's NOT alone',I felt the same way for years/Still do at times & I'm '39-yrs',,As far as the 'Medication' goes,,(I was on the same ones when I was younger too) they soon put me on "Primidone",,(it would 'either' stop/controll the 'Grand-Mal-Seizures',but in reaction of taking it,,would cause 'Black-Outs'/they call them 'Seizures' too,,but you're just 'in-& out of it' for 'mabe' 2-5-min, & sometimes tired afterwards..Again,,this 'Med' is Really good,,& I was on it since I was about 10-12-yrs old. Keep up the 'good-work' & if your 'Son' EVER needs someone to talk to,,,I've had experience with "Kids" for years,,,,
Take-Care,,Your Friend,,,,Tracey
Hi "Kimmie"/I'm Tracey: & just like everyone else says,,,"NO" you're NOT crazy,,(the ones that 'can't' accept us the way we are/& are 'sick-in-the-head' ) are the ones that are 'Crazy',,Right,,,
Anyway,,,Keep standing by your 'Son' & tell him/get him in with other's that suffer "Epilepsy",,& they'll also tell him 'He's NOT alone',I felt the same way for years/Still do at times & I'm '39-yrs',,As far as the 'Medication' goes,,(I was on the same ones when I was younger too) they soon put me on "Primidone",,(it would 'either' stop/controll the 'Grand-Mal-Seizures',but in reaction of taking it,,would cause 'Black-Outs'/they call them 'Seizures' too,,but you're just 'in-& out of it' for 'mabe' 2-5-min, & sometimes tired afterwards..Again,,this 'Med' is Really good,,& I was on it since I was about 10-12-yrs old. Keep up the 'good-work' & if your 'Son' EVER needs someone to talk to,,,I've had experience with "Kids" for years,,,,
Take-Care,,Your Friend,,,,Tracey