( I do not own this image)
Happy New Year hope4epilepsy family!!! I hope your 2016 ended well and I hope you all have a great, prosperous, good health year! I pray you all have a seizure free Year, but in case it doesn’t go that way don’t lose your hope! Always have hope and take good care of your self and BELIEVE you will be healed.
My goal for 2017 is to try to write weekly blog post, last year I slacked off writing blog post a lot but this year one of my goals is to at least write 1 post a week. Feel free to contact me by email under the contact tab if you have any ideas or topics you would like me to write about. Also don’t be afraid to comment under blog posts and share your questions, comments, and experiences.
A few tips for the new year to improve your health is number 1. Be your own advocate or your child’s advocate.
2. Take all medications on time, write it down in your calendar or set an alarm
3. Keep a journal of all seizure activity and seizures
4. Communicate and keep you/your child’s health care team updated
5. Try to spread awareness as much as you can, inform people of seizure first aid, types of seizures, wear purple, volunteer at your local epilepsy organization, have a fundraiser to raise funds and awareness.
6. Get an adequate amount of sleep, excersice, and eat healthy
Be Blessed 💜💜💜💜💜
** All photos were taking by me besides the last two images (make a wish & Gktw)
Hello hope4epilepsy family! I hope everyone is doing well ! Kaden has been doing pretty good despite a few episodes, but nonetheless he’s still his happy self 🙂 We actually just recently returned from a Make A Wish trip to Florida! Kaden was granted a wish to meet the minions at Universal Studios and we also went to Disney World, Sea World, and Crayola Experience! It was so fun, we had a magical week! Kaden has been battling intractable epilepsy since he was 1 year old and he’s now 5, so he was very deserving of this trip and I’m glad he got to go and enjoyed a week of fun and forgetting about his health issues for that short moment. If any of you have children who suffer from intractable epilepsy you should look into a near by Make A Wish organization and see if your child qualifies for a granted wish ( there are rules and requirements ) trust me if your child is eligible for a wish they will absolutely love it and it will help cheer them up and forget about their health issues for the time being. Its unfortunate that many kids spend their childhood at doctors offices, hospitals, and taking medication every day, but organizations like Make A Wish grants children with life threatening illnesses, pretty much any wish they desire. My son and I had a awesome time at Disney, and at Give Kid’s The World village. We are very thankful for Make A Wish Mid Atlantic,their wish volunteers and Give the kids the world village staff and volunteers for bringing my son wish to life. These are memories we will hold on to forever. I hope everyone has a Happy Holiday and Wonderful New Year !! 💜
November is a very important month to me, because it’s Epilepsy Awareness Month. Not too many people are aware of what epilepsy is or that there is even a awareness month for it. My 5 year old son has been a fighter of epilepsy for the past four years. Every November I take the time out to educate others on epilepsy and how they can help. I am not a trained medical profession, but I have learned a lot from personal life experiences and I love to share what I have learned with others.
Do you know what to do if someone around you has a seizure? If you don’t then you should learn first aid for seizures, to help someone if they have a seizure around you. Seizures are more common than people think, so it’s very likely that you may witness someone having a seizure at least once in your life if you already haven’t.
There are various types of seizures but the two main types of seizures are grand mal and complex partial. Both types require different first aid for the person having the seizure, be sure to do your own research about different types of seizures so you can be aware of what they look like.
Grand mal seizures are the type of seizures people think of when they hear the word “seizure” . A person having a grand mal usually falls to the floor, shakes/jerks, become unaware of what’s going on around them,and unconscious. When you witness a person having a grand mal, help the person to the floor , look at the time so you can time the seizure, cushion their head , loosen their clothes, and turn them on their side. Call 911 if it’s the person first time having a seizure, having trouble breathing, has other serious health conditions or if the seizure last longer than 5 minutes. Make sure to use your own judgement if you think 911 should be called then call.
Complex partial are difficult to describe, the person may seem fine but may not be able to respond to anything and this type of seizure may include involuntary movements like lip smacking or fidgeting, or hallucinations. They may seem confused suddenly or stare off into space. When a person is having a complex partial seizure, just monitor them and keep them away from sharp and hot objects. Stay with the person until the seizure is over.
After any seizure the person may be confused and scared, just assure the person that you are there to help them and explain to them what just happened. Please remember do NOT put anything in a person’s mouth who is having a seizure, and do NOT hold the person down. Please educate yourselves and become aware of the many types of seizures and first aid, there is a lot of information you can research about epilepsy and seizures and also contact a medical professional with any questions or concerns you may have about seizures . Become aware, because someone’s life may depend on your ability to help them during a seizure
Image from google image
*Image from google*
Hey guys I just wanted to share a few tips for those of you who have children in school or child care programs who also have epilepsy or history of seizures.
I just enrolled my son into a full day pre -k program at our local elementary school, this is his first time going to a full day program, so im very excited for him. However; I wanted to make sure every staff that comes into contact with him knew about his seizures as well as be comfortable enough to know what to do in case he has one. So of course we had an IEP meeting and a meeting with the nurse to go over the basics but I felt like a lot of information that I knew about my son condition was left out. So I decided that I will give each staff that comes into contact on a daily basis with my son a personal info packet on his condition, not just about epilepsy in general but HIS epilepsy condition, because everyone is very different. The staff members I gave a info pamphlet too in case your not sure who all to give it to are his teacher, assistant teacher, nurse, speech pathologist, psychologist, gym teacher, and the administrator of special education.
The info pamphlet I put together included notes by me listing the type of seizures Kaden has and what they look like, possible triggers, warnings, and a few tips like not locking the bathroom door, or monitoring him closely while climbing on the play ground. I also included a basic quick facts paper about epilepsy as well as a first aid paper with visuals, and info about his likes, dislikes, his strengths and weaknesses.
Its very important to be a active advocate when it comes to your child, especially when you have to leave them at a school for a long period of time without you there. Its crucial to make sure everyone is aware and knows what to do. It’s nothing like being clueless when someone is having a seizure, if the person doesn’t know the proper first aid for the child having a seizure it can result in the child being seriously injured or even death.
And one more cool tip, your local epilepsy organization may offer free training yes free 🙂 to schools, and child care centers or even business who are seeking out training or to just learn more about seizures. So feel free to reach out to your local epilepsy organization and ask about the services they may offer. I hope my school tips that have worked for me will help you too. Feel free to comment any helpful tips. Have a great and safe school year ! Xoxo
Epilepsy is so complex, trial & error with medications and treatments, not knowing when a seizure may strike. It can be really tough for the person having seizures, imagine having continuous seizures and the doctor can’t really explain why. There were times I felt I knew more about my son epilepsy condition than the doctors and i’m sure most people who have epilepsy or children with special needs can relate to that. After three years on three medications Trileptal, Depakote, and Vimpat, my sons doctors decided to do a no medications EEG and to their surprise and mine it didn’t bring on many seizures to catch except one complex partial seizure that lasted a few seconds. Kaden being off of his medications actually helped him, all of the medications he was on at once actually seemed to be hurting him more than helping his seizures. So my son Doctor and I decided to take a leap of faith and see how he would do on only one medication, and that’s Onfi. He’s been on Onfi for two months now and has only had one seizure episode versus having several a week ! I just thank God he is doing much better, and many nights crying and praying and keeping faith is starting to pay off. Not everyone situation is the same, you shouldn’t try to come off your medications without doctors approval because you can really hurt yourself. But in Kadens situation getting ween off of his medications and just on one has really helped him out a lot; less seizures, no side effects, and he’s sleeping great at night!
No matter how hard this epilepsy journey may get, it will feel like a roller coaster at times, one minute everything is fine and the next its all bad, you still have to keep your faith, stay positive, and keep pushing. Don’t give up.
S/N I am NOT a medical expert, these are my personal experiences with my son. Before you do any changes with your medications or treatments please consult a medical professional.
A poem I came across…
Just writing an update on Kaden, he has been doing absolutely great since his EEG two weeks ago, he hasn’t had a grand mal seizure in about 3 weeks and I havent noticed a complex partial seizure in almost two weeks. God is so good and I’m so happy kaden is experiencing more seizure free days and I pray it stays that way for awhile or better yet forever. After his long term EEG the doctors decided to take him off of depakote, vimpat, and trileptal and he started a small dose of onfi and he’s doing so well on onfi. I pray Kaden continues to be seizure free and I pray the same for you and your children.
Feel free to comment how long you or your child has been seizure FREE, I’m eager to hear 🙂
My son gets a long term EEG done this weekend. We are at the hospital from Friday until Monday. EEG which stands for electroencephalogram are bitter sweet. Its a test that looks at the electrical activity in your brain. We go there hoping for answers but may not get the answers we want or need. My son has had uncontrollable seizures for a couple years now so we’ve had plenty of these testings. This weekend EEG is different because the doctor order for his medication to be decreased to trigger a seizure during the testing so they can see exactly what’s going on with him. After all the eegs he’s had, he’s never had a seizure during them ironically. Hopefully they can catch one this time to give us answers that we so desperately need.
Tips for toddler EEG
- Pack snacks and favorite foods
- Pack toys they can enjoy while in the bed
- Bring their favorite teddy bear or anything that comforts them
- Try to explain to them everything will be ok they are just getting a test done to help them feel better
- We call the electrodes and the wrap around his head a hat and tell him he looks cool with it.
I hope Kaden’s EEG goes smooth and we find the focal point of his seizures and I hope you all have a great weekend!
I always have people come to me and say they admire my strength on the ability to take care of my son and his health condition. I just feel like when you love someone more than the air you breathe you are willing to do anything in your power to make sure they are good. Even if it involves me being up half the night tending to him and his seizures, or spending several hours or days in the hospital, or knowing he’s about to have one so I lay down beside him assuring him it will be okay . Imagine your child looking at you because he feels weird says he’s scared then has a seizure. Epilepsy is very serious , this is the life my son lives and many others. But I feel like as his mother its my duty to do all of these things, but I’m very appreciative that everyone recognizes my love for my son and how passionate I am about advocating for people with epilepsy.