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    Epileptic Challenges

    Hi Guys! I'm a new parent and I have a child. My mother in law is always reminding me to watch always my child to avoid any accidents that may lead to a head injury because she fears that it may lead to Epilepsy. This is based on her experience due that he got a son who is epileptic. I'm having a hard time to baby proof everything-eliminating or minimizing potential hazards. For those who are epileptic, what are the challenges that you have faced and how did you deal with it?

    #2
    I don't have epilepsy so I'll let people who have epilepsy speak on that. Of course you should try to keep your kid safe from head injury as much as you can because a head injury is life long, but it's important to remember that brain injury does not always equal getting epilepsy. I have Cerebral Palsy which is a brain injury which makes me higher risk for epilepsy but I do NOT have epilepsy. I know people who have epilepsy who are happy, healthy and fulfilled regardless and I think as your kid gets older you need to give your kid a sense that your not a total helicopter parent because kids who are overly protected or babied will resent you.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

    Comment


      #3
      Originally posted by funnylegs4 View Post
      I don't have epilepsy so I'll let people who have epilepsy speak on that. Of course you should try to keep your kid safe from head injury as much as you can because a head injury is life long, but it's important to remember that brain injury does not always equal getting epilepsy. I have Cerebral Palsy which is a brain injury which makes me higher risk for epilepsy but I do NOT have epilepsy. I know people who have epilepsy who are happy, healthy and fulfilled regardless and I think as your kid gets older you need to give your kid a sense that your not a total helicopter parent because kids who are overly protected or babied will resent you.
      funnylegs4
      I appreciate your response and really admire your positivity and strength despite the situation you are in. I have this anxiety thing that makes me overthink things personally and as a parent, especially when it comes to my kid. I am kinda worried of about having a possible head or brain injuries that might cause sickness such as epilepsy. But then again, thank you for nudging me to still see the safety of my kid but not to baby too much or to overprotect as it will be a headache sooner.

      By the way, how are you coping up with your situation? I would love to hear and gain insights from you.

      Thanks funnylegs4

      Comment


        #4
        Originally posted by SweetChoco View Post

        funnylegs4
        I appreciate your response and really admire your positivity and strength despite the situation you are in. I have this anxiety thing that makes me overthink things personally and as a parent, especially when it comes to my kid. I am kinda worried of about having a possible head or brain injuries that might cause sickness such as epilepsy. But then again, thank you for nudging me to still see the safety of my kid but not to baby too much or to overprotect as it will be a headache sooner.

        By the way, how are you coping up with your situation? I would love to hear and gain insights from you.

        Thanks funnylegs4
        Thanks! You’re welcome! Do you mind if I ask why you are concerned about brain injuries in particular? Is this concern mainly because of your other relative with epilepsy? Or something else? How old is the child? I understand. I often have anxiety related to the safety of my friends or my family. I once had a teacher who had a stroke and my whole class was really, really, really, scared he might get epilepsy as a result of the stroke or have some secondary injury while he was teaching but we also had to respect that he knew some of his limitations and letting him figure things out on his own and what his own limitations were gave him a sort of dignity if you will. His life was not about our fears. Luckily he doesn’t have epilepsy. I know with children it’s a lot harder since children don’t have logic or good judgement developed yet but I think the best thing you can do is let your kid signal to you when they are ready to do something new and find a safe way of doing what they desire. Like maybe your kid wishes to do an activity like a sport, find a sport that is very unlikely to cause head injury and do the activity together initially or supervise for the first session or 2. Then give your kid space to do it on their own. In my experience due to my Cerebral Palsy people encouraged independence too early or encouraged independence too late and I resented these adults because it felt like they did not trust me to know my own body and did not respect my “No.”

        I have Cerebral Palsy which is similar to a Stroke so it’s like a head injury in a way but it happens in utero or during birth. It effects my coordination and balance. Since I was born with my brain injury it feels very natural to have a brain injury and move the way I do. I have been extremely healthy all of my life. I work, went to college etc. No worries my work is conducted safely due to COVID19. I have moments of frustration with my balance but these moments are extremely brief. At times I have had to readjust academic or work desires to suit my need for disability accommodation which was annoying at times, but the readjustments led me on a path that was better than I originally planned. I know many people with complex illness and disabilities who live life to the fullest. Your kid will have hardships and may have to readjust at times, as do all human beings, but your kid will be okay and will thrive no matter what as long as your kid knows that you adore every single part of them disability, illness, condition, or not. Like hypothetically if your kid got something like epilepsy, remind him you don’t like some of the challenges epilepsy creates but you love him and see him as whole regardless. As my family did for me. Does this help?
        Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
        My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

        Comment


          #5
          This is a good thread up for discussion SweetChoco

          I thought Epilepsy is only caused by brain damage due to stroke or tumors. So there is a possibility that epilepsy might occur in children or adults if they are often having head injuries?

          Comment


            #6
            Hello -- I started having seizures when I was 47 years old - no stroke, or injury. An MRI showed no trouble at all so it was diagnosed as idiopathic epilepsy. Fourteen long, long years later I had another MRI which showed a well developed tumor. I was able to get the old MRI and, when read by other experts, it showed the same well developed tumor. The first MRI was misread.

            Many, many tests later, Feb. 14, 2006, I had surgery to remove the oligodendroglioma tumor from my left hippocampus. No seizure until 14 months later, May, 2007, -- then more surgery to remove the entire left hippocampus. I have not had a single seizure since then, but I still take the same medication, see the great neurologist every year and have an MRI of my brain taken every 18 months.

            Sorry for being so long --- I wanted to say that there is such a thing as idiopathic (no reason) epilepsy happening in an older person. And epilepsy can happen in a new born child. Epilepsy can happen for many reasons or no reason at all.

            Comment


              #7
              Originally posted by daughtergaited View Post
              This is a good thread up for discussion SweetChoco

              I thought Epilepsy is only caused by brain damage due to stroke or tumors. So there is a possibility that epilepsy might occur in children or adults if they are often having head injuries?
              It is my understanding that yes Traumatic Brain Injury can cause Epilepsy but as Only registered and activated users can see links., Click Here To Register... points out Epilepsy can occur randomly for no apparent reason. I remember reading a blog once where a little girl with a brain injury did NOT have epilepsy and the younger sister who was otherwise healthy DID indeed have epilepsy. I have also heard of cases where people with Stroke or Traumatic Brain Injury have a single isolated seizure very soon after the initial injury because the brain tissue is irritated and sending chaotic messages due to the physical damage but do not otherwise have epilepsy. Hypoglycemia otherwise known as low blood sugar can cause seizures as well even if the person does not have epilepsy, so if a person has a seizure all of a sudden they are usually tested for both high and low blood sugar with a single finger prick in the ER etc. I also know one guy with a learning disability called dysgraphia who had a seizure out of no where while trying to cook a hot dog and the exact cause was never found. He does not have epilepsy nor does he take medication. So the brain is mysterious to say the least...
              Last edited by funnylegs4; 04-16-2021, 09:18 AM. Reason: spelling error
              Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
              My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

              Comment


                #8
                Oh wow, I did not know how mysterious epilepsy can be. I thought it is mainly from brain injuries. I am not aware that healthy people with no injury at all can have epilepsy. oh wow - that's kinda a lot to take for me. Thanks jingle for sharing that. And I hope you are doing okay.

                Hey funnylegs4 , you are such an inspiration - you encountered a lot, and no matter how and what your condition is - you are so strong! Having Cerebral Palsy is tough but you are able to manage to live with it every single day and it did not hinder you to live, reaching your goals, and being you.
                My son is a toddler, and he is really active that gets to bump everything hitting his head, his back, his toes, his knees. That's why I baby-proofed everything. I get scared when he hits his head especially with a family member who has epilepsy. But as you said, children must be guided carefully but not overprotected. And I will take that advice. Another thing is that my grandma had seizures moments before she died. Her seizures were from her cancer that was really unexpected since it was not in the family history. We were all shocked that she got skin cancer - melanoma on her scalp. It was only fully diagnosed late 2019 and she died last month.

                So I was really really paranoid, depressed, anxious. I wanted to go and see a counselor or therapist to probably help in some way. Do you guys have a good experience talking to a counselor?

                Comment


                  #9
                  Originally posted by SweetChoco View Post
                  Oh wow, I did not know how mysterious epilepsy can be. I thought it is mainly from brain injuries. I am not aware that healthy people with no injury at all can have epilepsy. oh wow - that's kinda a lot to take for me. Thanks jingle for sharing that. And I hope you are doing okay.

                  Hey funnylegs4 , you are such an inspiration - you encountered a lot, and no matter how and what your condition is - you are so strong! Having Cerebral Palsy is tough but you are able to manage to live with it every single day and it did not hinder you to live, reaching your goals, and being you.
                  My son is a toddler, and he is really active that gets to bump everything hitting his head, his back, his toes, his knees. That's why I baby-proofed everything. I get scared when he hits his head especially with a family member who has epilepsy. But as you said, children must be guided carefully but not overprotected. And I will take that advice. Another thing is that my grandma had seizures moments before she died. Her seizures were from her cancer that was really unexpected since it was not in the family history. We were all shocked that she got skin cancer - melanoma on her scalp. It was only fully diagnosed late 2019 and she died last month.

                  So I was really really paranoid, depressed, anxious. I wanted to go and see a counselor or therapist to probably help in some way. Do you guys have a good experience talking to a counselor?
                  Thanks for the lovely compliment! Oh if he's a toddler than as he grows the bumping of body parts will be a lot less. Toddlers are just into everything. But as kids get older they get less impulsive and have more motor control. Can you buy some exercise mats or other soft things he can roll around on to get rid of excess energy maybe? I know a ton of young kids that were pretty accident prone as toddlers and none of them ever developed epilepsy. None of these kids are disabled in any way. Yes I think talking to a counselor or therapist about your paranoia, depression and anxiety is an excellent idea. I spoke to a counselor about some teen issues I had that all teens go through and it was a nice experience so I highly recommend you get some professional help coping. I'm so sorry your grandmother had seizures along with cancer! I think it is a good idea to talk to a counselor about these past events and ask for strategies that will help you not "barrow trouble from tomorrow" as the saying goes. It's important for you to develop coping skills now because kids do pick up on anxiety and depression from adults. If he sees you getting depressed he may think that he needs to react that way too. It's also important for you and your child to know disability in and of itself(with things like Cerebral Palsy) is NOT tragic. Bad things happen and we learn to live with the bodies we have. It's hard but it's worth it. Let your child feel whatever he feels about his own body but don't bring unnecessary fear and assumptions into his mind, you know? Please know I place zero judgments on your feelings. You are entitled to feel whatever you feel as well. Hope this helps!
                  Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                  My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                  Comment


                    #10
                    ((((((Sweet Choco)))))) ~

                    Both of my sons had epilepsy, which was likely related to their underlying undiagnosed progressive neuromuscular disease. Michael had intractable seizures for 22 years, which began at 10 years old. Intractable means relentless, continuous, uncontrolled.

                    Jonathan's first seizure was at age 2, after he woke up from a nap. His seizures seemed to relate to hormonal changes at the ages of 2, 13, 18, 26, 40 and on. He had breakthrough seizures, but overall his seizures were controlled with seizure medications.

                    None of the seizure medications Michael took controlled his seizures.

                    There are many different types of seizures, and not all of them are convulsive involving flailing or stiffening arms and legs. Here is a link with the various types of seizures:

                    Only registered and activated users can see links., Click Here To Register...

                    Perhaps it would be helpful to you to find out more about epilepsy, if you explore this site.

                    I'm so very sorry that you lost your grandma to melanoma. As the heart and lungs begin to shut down during the process of dying, it is not uncommon for the person to have a seizure. This happens to people, who don't have brain cancer, or any type of cancer. It is caused by a loss of oxygen and blood to the brain.

                    Now, I am going to teach you a very easy way to reduce anxiety and calm you. Breathe in through your nose to the count of 4. Exhale through your mouth with parted lips to the count of 8. Repeat this several times.

                    I also recommend visualization and meditation. Breathe in and out, with your eyes closed, in a quiet room, where you are comfortably seated. Picture your ideal place ~ a meadow, the beach, the mountains ... this is Your Place.

                    Focus on your body. Beginning with the top of your head. Relax your head. Then your eyebrows, then your lips, then your neck, shoulders, etc. until you reach your toes.

                    At this point, you should be relaxed. So, just rest and be relaxed.

                    You are a busy mom of a toddler, so finding this time may be difficult. But try to set aside 10 minutes for yourself every day/evening. Maybe during your toddler's nap time?

                    It is important to take care of yourself. Please find some YOU time. It will help.

                    And remember that curiosity is a significant part of development, so you can expect your child to be curious.

                    Sending you healing, positive energy and prayers for rest and strength.

                    Love & Light,



                    Rose

                    *Virtual Hugs Are Germ-Free!


                    THANKS!




                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      #11
                      So far, I have had a long and interesting adventure with seizures epilepsy. I have done my best to meet my challenges, and not allow epilepsy to get in the way of me having a normal and full life. Raised by a professor of neurosurgery and a RN, I was subject to an overprotective mom, and a dad who wanted me to follow in his footsteps, and be his ski buddy. (My 1st observed seizure was in Megeve, France a few days after skiing Mt Blanc.) My father and I never missed a season for the next 13 years. We went back to Mt Blanc 18 years later, hired a Swiss guide, and climbed higher than accessible by tram to ski the glaciers.

                      Yes, epilepsy is initially caused by an injury to the brain.
                      ”Epileptogenisis” = The process in which normal brain tissue develops epilepsy.
                      This usually happens after some kind of neural injury, such as a TBI, AVM, tumor, or other type of trauma that causes the neurons to “learn” to start seizures. Sometimes this is after it is healed, and the scar tissue is causing the problem.
                      The pathology of epilepsy itself really isn’t as mysterious as finding it in the patient. Each patient has a very unique nervous system. Each case of epilepsy is unique to each patient, and is caused by something unique to the patient. That’s were the mystery lies.

                      My habit has been to take my personal challenges, and if possible, use them to help others with the similar issues. In the early 1990’s, I was looking for epilepsy support in my hometown, and could not find a support group. My solution was to contact the EFA and start one for the community. Suddenly I was talking group facilitator classes from the EFA. Eventually, I was forced to relocate, and abandon the group. This eventually lead to me finding BrainTalk Communities.

                      Well, that’s another story.

                      Challenges are what you make of them.

                      The most determined win!
                      "The Most Determined Win!"

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