Saturday 14th July saw myself and Noah heading down to the Olympic Park for the Women with Epilepsy Picnic in the park. It has been organised by Kim Morley and Epilepsy Action. I was hesitant about going, my old fears of tube stations was niggling and just getting out the house this morning seemed a struggle, but boy was I glad I pushed through. We arrived to be greeted by fellow blogger and epilepsy Mummy Clair Cobbold (http://becomingamumwithepilepsy.blogspot.com/), who I have known since I was pregnant with Noah, her little boy is a few months younger than Noah, it was lovely to see her. I haven't seen her since last years London Marathon. Noah was a little shy but Riley took him under her wing and he was soon running around. Next was a cuddle with Kim, and introducing her to my boy.Kim is a hero for women and in particular women with epilepsy, she fights so hard for people to be given all information on medication, not just epilepsy medication, and her website (http://www.womenwithepilepsy.co.uk/) is a valuable asset to any women with epilepsy. Soon people were arriving and there was a really lovely atmosphere, the children were playing beautifully together and the adults were chatting.Then along came Torie (https://www.torierobinson.com/), who I feel like I know so well through social media. Again it is the reason I love social media, this lovely lady felt like a friend before we had ever met. Noah fell in love with her instantly, and for me anyone my son loves like that instantly is a good egg in my eyes. Social media has made Clair and Torie friends before we met and even when we don't see each other often. Whilst the kids were playing we sat down for a group discussion to talk about any issues we may have and offer advice and tips for each other. It was really useful, I learnt a lot, hearing other stories made me feel like I wasn’t alone. We discussed the ketogenic diet, which had been successful for one lady bringing her seizures from 10 a month to 2. We discussed how different cultures sill aren't accepting of epilepsy and what we could try and do to help. I also touched upon how this was becoming an issue with women taking valproate and hiding it from husbands and families and going on to have children with disabilities. We also discussed that although epilepsy awareness had come so far in recent years there was still a very long way to go. It was refreshing to have a chat about issues that cross my mind on a frequent basis. It was also sad to hear stories of those who remained pretty much housebound and we tried our hardest to encourage and reassure them that they could get out and about. As this was all going on people were also stopping by for information and to learn more or share their stories. In the afternoon I got into a discussion with Kim and others about the effects of medication on our children. There have been a number of us who have discovered that our children have the same or similar issues. We may never know if its the meds but as Kim pointed out that without the data how are any of us ever to make properly informed choices. It did me the world of good to discuss Noahs recent health issues, with the group of women that I had confided in during the early hours of the morning, their support shone through as always. Whilst there I was also able to pick up the “ My Mummy has epilepsy” book to try and start explaining to Noah what was going on when Mummy was poorly. It was good to get advice from others too on how they explained things to their children, I so often worry about the effect this all has on my darling boy. Chris arrived after night duty just in time for the bike activities, BikeWorks offered a free 30 minute tour of the Olympic park and the chance to try out different bike. Whilst Noah and Chris played on the bikes I took the chance to take advantage of the free massage that was on offer. The afternoon flew by, it really was so lovely and seeing how much Noah was adored by these ladies really warmed my heart. I caught up with Kim Morley and she had this to say “ It was a privilege to meet up with all the families, by us all getting together it gave us the opportunity of sharing stories and words of wisdom. The bonus was the other families who approached us for information for their loved one. A great day had by all with special thanks to Marie Edgar from Epilepsy Action.” That's what I take away from today friendship and support, I have known Torie and Clair for a long time, and social media really is such an asset when used in a positive way. It was great to see Kim and hear her words of wisdom as always. As always my purple family never disappoint and I look forward to the next one. Contact me:
Twitter/Instagram: @fairyfaye1986 Email: [email protected] Facebookpage: https://www.facebook.com/fairyfaye1986/?ref=aymt_homepage_panel Facebook support group: https://www.facebook.com/groups/739520702798749/
8 Comments
Hailey Miller
5/9/2018 05:26:35 am
Hi Mom here, I have a son who's been diagnosed with childhood epilepsy syndrome, this means their epilepsy has specific characteristics. These can include the type of seizure or seizures they have, the age when the seizures started and the specific results of an electroencephalogram (EEG).An EEG test is painless, and it records the electrical activity of the brain. In my son's case, he has "benign" which means they usually have a good outcome and usually go away once the child reaches a certain age. And as a mom, I don't want my son to suffer this kind of illness for a very long time. He's 5 yrs old now and he is doing great in school. That's why I am searching the best solution for my son and as along the way, I read this https://www.worldwide-marijuana-seeds.com/blogs/marijuana-news/strain-review-walker-kush-by-rare-dankness that cannabis can be the solution to my problem. But I did not try it yet. So am just asking if it safe for my son? Any reply will highly appreciate. Thanks in advance.
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Ali Sydney
31/10/2018 04:45:40 pm
My son had suffered from myoclonic seizure for over a year, uncontrollably with meds. When he has one it starts where he rolls his eyes back or his eyes are staring off to nowhere, seeing he arms jerk every single night His breathing gets very shallow and his heart rate speeds up, now his not sleeping. I don't think there's any changing he started experiencing one horrible serious side effect of the medicine. I could not get an appointment with a neurologist for 5 weeks. I was filled with worry. Thank God for a wonderful doctor, i read a testimonial of someone on a website her daughter was cure from seizure using herbal medicine. I called the number that was retain at the website, i explain to doctor Lawson about my son symptom and I ordered his medicine. my son used the medicine for month now, his health has change the meds worked without any trace of side effects. For over 1 year now seizure free if you don't have this herbal product it is available. It works, wonderfully. I'm so grateful that he was able to SURVIVE it.
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thomas janice
2/12/2018 07:56:51 am
My son is 13 and has been diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn't know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn't answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children's hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn't feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through Herbal medication. I read awesome stories of people whose condition were worse. I was not a fan of Herbal Medication, because I once believed that they have not researched it enough. But due to numerous testimonies I was more than willing to try it…. I contacted the doctor, and my son used the herbal medication. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The herbal medication worked without any trace of side effects on my son…. totally free. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using herbal medicine, and anyone who suffers from seizures can be cured.
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thomas janice
2/12/2018 07:59:31 am
Contact him: Dr.lawson52@gmail
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quillinalonzo
22/2/2019 11:03:31 am
Some people are able to stop their seizure medication. This should only be done with your doctor’s advice and help.
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quillinalonzo
28/3/2019 11:36:01 am
Today, most epilepsy is treated with medication. Drugs do not cure epilepsy, but they can often control seizures very well. About 80% of people with epilepsy today have their seizures controlled by medication at least some of the time. Of course, that means that 20% of people with epilepsy are not helped by medication. And others who do take medication say that it doesn't help enough. Your doctor will work with you to select the right kind of medication for your type of seizures. If you find that the medication does not control your seizures, your doctor can then talk with you about other treatment options.
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quillinalonzo
12/6/2019 11:24:58 am
Your epilepsy may be inherited, or it may not. One study has found that some people with epilepsy have inherited an abnormally active version of a gene that makes them resistant to drugs. This may explain why some people have a hard time controlling their seizures with medication.
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quillinalonzo
2/6/2020 08:31:28 am
After you’re diagnosed with epilepsy, you have several ways to get treatment. Medication, a special diet, an implant that works on your nerves or brain, and surgery could all help you feel better.
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AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
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