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How could everything right go so wrong?

Thu, 02/24/2005 - 13:29
Topic: Family & Friends
I AM NOT EXPECTING A HUGE AMOUNT OF ANSWERS OR RESPONSE, YET I FEEL THAT AFTER A YEAR OF PURE HELL THAT I SHOULD VOICE MY OPINION AND TRY TO COME TO TERMS WITH WHAT HAS HAPPENED TO MY LIITLE BOY AND OUR FAMILY.15 MONTHS AGO, I WATCHED MY 3 YEAR OLD SON "NOODLE" DOWN HIS BOOSTER SEAT AT THE DINNER TABLE. I WATCHED HIM TURN BLUE, SHAKE, CONVULSE, STOP BREATHING, THROW UP, THEN EVENTUALLY BREATHE. 911 WAS OF COURSE CALLED FOR I THOUGHT HE WAS CHOKING - HOW WAS I SUPPOSE TO KNOW?DR'S SAID THAT IT WAS A FEBRILE SEIZURE...SURE.TO MAKE A VERY LONG STORY VERY VERY VERY SHORT... MY LITTLE BOY ENDED UP HAVING 20 SEIZURES A DAY. WE HAD HIM AT THE BEST HOSPITAL(SUPPOSEDALLY), AND THEY TOLD ME THAT AFTER 3 WEEKS OF MRI'S, CAT SCANS, BIOPSY'S, SPINAL TAP'S AND NUMEROUS BLOOD TESTS THAT THERE WAS NOTHING THAT THEY COULD DO FOR HIM. THEY SENT US HOME ON 5 DIFFERNET MED'S - 2 OF WHICH HAD NEVER BEEN TESTED ON PEDIATRIC'S.WELL, MY SON GOT WORSE.. AND WORSE.. AND WORSE. I CALLED THE NEUROLOGISTS AT THE HOSPITAL WHO TOLD ME NOT TO CALL THEM UNLESS IT WAS AN EMERGENCY?????????THE POINT OF THE STORY IS THAT I ENDED UP COMING IN CONTACT WITH SOMEONE - WHO I BELIEVE IS AN ANGEL - WHO PUT ME IN TOUCH WITH A HOSPITAL AND TREATED MY SON WITHIN 1 WEEK. AND PROVED TO ME AT THAT VERY POINT THAT IT IS NOT WHAT YOU KNOW - BUT WHO YOU KNOW.IF YOU - OR ANYBODY YOU KNOW IS STRUGGLING WITH A CHILD WITH IRRETRACTABLE SEIZURES PLEASE LET THEM KNOW THAT THERE ARE 2 THINGS THAT YOU CAN DO TO SAVE THEIR LIVES - 1) JUST BECAUSE SOMEBODY TELLS YOU THE HOSPITAL IS THE BEST - DOESN'T MEAN IT'S THE BEST FOR YOU.2)FOLLOW YOUR HEART - AND BE AN ADVOCATE FOR WHAT YOU NEED AND FOR WHAT YOU NEED TO DO.THESE ARE SMALL THINGS THAT I NEVER HAD ANYONE TELL ME UNTIL MY SON WAS HALF DEAD AND OUR "ANGEL" WALKED INTO OUR LIVES. AS OF FEBRUARY 14TH, MY LITTLE MAN HAS BEEN SEIZURE FREE.BELIEVE IN SELF SACRIFICE AND BELIEVE THAT THINGS CAN GET BETTER.THANK YOU, MELISSA

Comments

RE: How could everything right go so wrong?

Submitted by Christine on Wed, 2005-02-23 - 15:15
Blessings to you Melissa. Your letter expresses that you have been through "Hell" but have chosen the route of "knowledge" as your salvation. I commend you, and I (like you) know that if you are determined enough, your child's epilepsy will not be a condition of life. If treated properly (according to the vast testaments that I have read on this site, and my own experience) Epilepsy can be controlled, and all of "Life's" happinesses are there for all of us. Good Luck (and your child is very lucky to have been blessed with you as a parent) - Christine

RE: How could everything right go so wrong?

Submitted by wrless on Wed, 2005-02-23 - 19:06

What was the answer for your son?  My son has been diagnosed as autistic at age 4, he's now 8 and we just discovered a few months ago he's having absence seizures.  The meds have been horrible, and yes, even after he broke out in a rash while on Lamictal the pedi neuro didn't return our calls.  Samuel Johnson Syndrome, which is a rash that can be fatal, is a side effect of Lamictal. 

He is mainstreamed in a first grade class, but since he's been on the meds he's no longer at grade level and I was told there is little chance he can catch up before year end.  He was doing better off the drugs and seizing.  I would love to know what has worked for other parents. 

Susan 

What was the answer for your son?  My son has been diagnosed as autistic at age 4, he's now 8 and we just discovered a few months ago he's having absence seizures.  The meds have been horrible, and yes, even after he broke out in a rash while on Lamictal the pedi neuro didn't return our calls.  Samuel Johnson Syndrome, which is a rash that can be fatal, is a side effect of Lamictal. 

He is mainstreamed in a first grade class, but since he's been on the meds he's no longer at grade level and I was told there is little chance he can catch up before year end.  He was doing better off the drugs and seizing.  I would love to know what has worked for other parents. 

Susan 

RE: How could everything right go so wrong?

Submitted by doyletr on Thu, 2005-02-24 - 13:29
Melissa,  I am a grandfather to Wally who at 2 and 1/2 has started to have seizures many times a day.  As of today they have just been trying medicines and nothing works great without making him incoherent.  We are trying to push our children to get Wally to the best center and doctor.  Your letter was a big help.  Where did you end up going for help...which center or doctor.  What was done to help your son?  Wally was diagnosed with complex partial seizures of the left frontal lobe, but more tests are scheduled for March.  The best to you and your "little man."  Thanks for any help.  Grandpa Tom

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