Uncontrolled epilepsy

Posted by zachareycovert @zachareycovert, Feb 3 1:19pm
  1. 3/27/15 was first day I seen my son have a seizure he is 20 yrs 5 mths old. he has since been diagnosed with uncontrolled epilepsy, JME, generalized epilepsy, clonic tonic, silent seizures, osteoparosis, he has broken 6 of his thoracic vertabrae from seizing, broken both shoulders many many times from seizures, broken teeth, fractured hip. today he is 25 years old 4 mths, he had a VNS installed 4-1-19 he had many side effects including chest pains and it malfunctioned the later part of 9-19, on 10-1-19 he went back to OR to have malfunctioning VNS removed and a new one replaced, he has since been left with a left vocal cord paralization and the VNS is not on. it was disclosed to me in passing of july of 2019 by my sons graduating school nurse that he had a seizure while at a wrestling practice and they never notified me nor got him medical help. I have come to find after searching records that on 3-10-10 my son was in an assult which resluted to him having multiple blows to the back of his head, 3-17-10 my son cut his finger at school using band saw and required stitches and at that time he stated that his hand jerked when he was asked how he cut it, 3-23-10 the school nurse and the wrestling coach witnessed my son have his actual first GM seizure and did not call me nor get him to a hospital. My heart screams that my son may have had a closed head injury that went un noticed from the assult that lead to the jerks in his arm that lead to the cut on his finger that later lead to the gm seizure. the blows to head were 13 before seizure, the hand jerk was 7 days after the blows to the head…We never seen anything until 3/27/15 when my son was a busniness man owning his own trucking business and was having dental issues that his dentist had placed him on pain meds for. he has been uncontrolled since first diagnosis. IM SEEKING PROFESIONAL OPINIONS could these events have triggered my sons journey into the epilepsy world?? did his brain patternize during those almost 5 silent years and the stress of the busness trigger the seizures to manifest? ISO HELP… my son is at high risk of Sudden un explained epileptic death, my world has been forever changed and I need to have UNDERSTANDING to WHY

Hello, @zachareycovert – welcome to Mayo Clinic Connect. Sounds like you and your son have been through an awful lot with his uncontrolled seizures, and you are trying to put the pieces together about what happened that could lead up to where he is now.

On Connect we don't offer any diagnoses or professional medical opinions. What we do offer is connection with other patients who have had similar diagnoses and in many cases have walked a similar road.

I'd like to introduce you to @patrassi @jakedduck1 @dawn_giacabazi @1710dave @liaquat @lynette1975. From their own personal experiences with epilepsy or seizure disorders in themselves or a loved one, I'm hoping they can offer input on whether your son's assault and finger cut may have played a role in his later grand mal and entry into epilepsy.

You mentioned your son owns a trucking business. Is he able to function okay with this position? Have you seen his health affect his career at all so far?

Liked by Leonard

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Dear @zachareycovert, I am so sorry about your son. My son's situation is very different from your son's, but he also has uncontrolled seizures. We
don't know why either. I hope you get some answers and that your son finds a medication that controls his seizures. Thinking of you–Pam Stewart

Liked by Lisa Lucier, Leonard

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@zachareycovert
I’m sorry to hear your son has Epilepsy.
Blows to the head can certainly cause Epilepsy. Did your son have a CT or MRI done after his assault? As a kid my friend(?) hit me in the head with a baseball bat. I believe that’s what caused my epilepsy although I’ll never know for sure. “I need to have UNDERSTANDING to WHY” is it really that important how or why, I mean what is it going to accomplish other than satisfying someones curiosity. Approximately 65% of people will never know the cause. You mentioned your son has a VNS, has it ever helped? Usually the longer it’s in the more effective it becomes. I’m not a fan of VNS myself and refused it when it was offered.
Stress is definitely a seizure trigger. Is your son under a lot of stress? Anxiety is also a major seizure trigger.
The school certainly should have informed you of your sons condition and if that was his first seizure he should’ve been taken to the emergency room and evaluated. It’s really seldom necessary to go to the hospital or call the doctor because of a seizure. If seizures are different, for example, more severe, more frequent, last longer, breathing problems,
confusion after the seizure lasts more than 15 or so minutes or longer than usual. Always call an ambulance if they have seizures without regaining consciousness in between, it’s likely Status Epilepticus which is a medical emergency. The longer a seizure continues the less likely it is going to resolve.
Does your son have nocturnal seizures, If so like you I too would be concerned about the possibility of S.U.D.E.P. (Sudden Unexpected Death in Epilepsy.) I believe your son would benefit from going to an epilepsy center and being evaluated by an Epileptologist. If your near Mayo Clinic in Rochester Minn It’s a level for epilepsy center and rated as the number one Center in the United States.
Here is a list of Epilepsy Centers in the United States,
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
All my best to your family,
Jake

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