After our super early therapy appointment, we came home and played ornament balance + bowling & a pom-pom drop that I set up for the girls. They had to walk across obstacles to pick an ornament out of the basket then balance it on different size cardboard tubes. When all the tubes were full, they got to bowl them over (or chuck a ball at them from over their heads). Afterwards, Quinn helped me tape the tubes to the wall for the pom-pom drop, we tried to see if we could angle the tubes until we made the pom-pom roll into a beehive on the floor. Of course, Carsen had to use lefty to drop the pom-poms down the tube and she pretty much hated every second of it until I promised her a white chocolate chip 🙄
I try to come up with things that can be adapted to each of their abilities; Quinn helped with the configuration of the tubes and angles and liked testing them out until we made it into a beehive, while Carsen picked out specific colored pom-poms that I asked her for. I put Carsen in barefeet for some of the stepping up and over so that she could sense and feel where her feet were on the stairs, we don't watch our feet when we walk up and down stairs, do we? She needs to feel where her feet are in space once in a while. Other than the first pic of her crawling over the step, I was behind her helping her take steps over.
Let's of walking, squatting, sit-to-stand, reaching both hands up over her head, then some constraint therapy with the pom-pom drop 💪
Did you catch the fascinating detail from this month's report from #RYAHData | A Closer Look at Epilepsy and Seizure Disorders?
Charlotte's web is the only the 6th most popular strain according to patient preference....but the most effective strain for symptom relief.
Clearly, the 'experience' created by strain and unwanted side effects must play into this contradiction.
Read the full report - out now - Link in Bio
𝕋𝕙𝕖 𝕕𝕚𝕗𝕗𝕚𝕔𝕦𝕝𝕥𝕚𝕖𝕤 𝕠𝕗 𝕖𝕒𝕥𝕚𝕟𝕘 𝕨𝕚𝕥𝕙 𝕗𝕒𝕔𝕚𝕒𝕝 𝕡𝕒𝕣𝕒𝕝𝕪𝕤𝕚𝕤
I know this is not the most charming video and in the end the nurses had to come and check on me, as something was wrong with me. Anyways... My boyfriend started documenting 🎥 every little thing I was going through, because he knew it would be important to me in the future. This video was shot on the 15'th of March 2015, when my facial paralysis was already developing. He told me that I wasn't really aware of the extent of my trauma back then. I didn't realise how bad the situation was at the time, partially because of the amount of drugs 💉💊 I was on and because my cerebral hemorrhage was already affecting my memory. Mentally I wasn't capable to process the gravity of it all, and the repercussions it would have for the rest of our lives. He explained to me that I was there physically, but the 'old Renée' was not present at all. The first time he showed me the footage, I couldn't even recognize myself 😱⚠. I couldn't remember 90% of the time I spent in hospital 🏥. Now I have some images to fill in the gaps 🙏. ▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪
Difficulties eating: 🔸not being able to steer your food with your tongue🔸accidentally biting your lip, tongue or cheek🔸not being able to taste or smell your food🔸drooling on the affected side of your face🔸hand / mouth coordination is off🔸food collects in the cheek of your affected side of the face🔸difficulties with swallowing🔸painful eye on affected side of the face whilst chewing🔸self-esteem troubles🔸feeling embarrassed ▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪
What difficulties did you experience whilst eating with facial paralysis❓Share yours in the comments below to support eachother and raise awareness 🙌🙏. ▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪▪
I'm wishing y'all are well, have gotten a proper care plan and still have hope to achieve improvements 🍀💚
1 424 minutes ago
𝐎𝐩𝐞𝐧 𝐋𝐞𝐭𝐭𝐞𝐫 𝟐:
To those struggling to include my disability into their perception of me:
To say I “get” it would be an understatement. It being your inability to see me as both the person I have always been and a person with a disability. Shockingly, I am both.
Yes, this is my first full year fully identifying with the label “𝘥𝘪𝘴𝘢𝘣𝘭𝘦𝘥” but disability has been a part of my identity long before that. So as I navigate this journey of incorporating my disabilities into my identity, I ask for your support and respect. Here are a few ways you can do that:
First, if you don’t understand the journey: ask questions. Confused about why I need a service dog and how he helps me? . . . 𝐀𝐬𝐤. Confused as to why my conditions are impacting me now and not as a child? . . . 𝐀𝐬𝐤.
Second, please don’t make assumptions about my health. I’m not hyperbolizing or faking conditions. Just ask my doctors. I’m not too sick to want to hang out. Just ask me. I’m not weak because I need a service dog. He makes me strong.
Third, respect me and my needs. I might be too tired to do something. Having a spastic heart rate can do that. I might not want to go into a crowded space or be out in public for too long. Preemptively consider the impact of situations/events on your disabled family members and then ask if the plans work for them. Don’t shut them out if their needs don’t meet your plans. Plans can change to be accessible to all. That doesn’t make a disabled family member a burden, just a consideration. Trust me, you’d much rather change the agenda than miss a family member over the holidays. 𝘗𝘭𝘢𝘯𝘴 𝘤𝘢𝘯 𝘤𝘩𝘢𝘯𝘨𝘦 𝘣𝘶𝘵 𝘧𝘢𝘮𝘪𝘭𝘺 𝘪𝘴 (𝘴𝘶𝘱𝘱𝘰𝘴𝘦𝘥 𝘵𝘰 𝘣𝘦) 𝘪𝘳𝘳𝘦𝘱𝘭𝘢𝘤𝘦𝘢𝘣𝘭𝘦.
I love and appreciate you. My disability is a part of who I am and I hope you can have the same respect for that part of me as the parts of me you know and love.
Is SeizureLink right for you? Then, now's a great time to get some peace of mind for you and your family. Starting today, use the code HOLIDAY19 to get $100 off your SeizureLink purchase. This offer will be valid until December 24th.
Follow the link on the bio to know more.
1 112 hours ago
I struggle with practicing what I preach. Hours ago I wrote about my progress in therapy, but awoke on my couch faced down shortly thereafter. A seizure. The second one in a week. I have the tools I need to prevent myself from seizing. The breathing exercises, the grounding techniques, and the mindful activities I’ve learned in therapy never once crossed my mind when I began to have those cyclical irrational thoughts. I couldn’t stop. I knew I needed to, but couldn’t. I need to practice what I preach. Slow down, Jen. Slow down. I know what I need to do now. I just have to actually do it before it gets to this point. I’m trying, I promise.
15 483 hours ago
It has been three months since patients in Louisiana received their first doses of medical marijuana. Dian Snowden, a 77-year-old Natchitoches woman was among the very first to collect her medication in northwest Louisiana. Dian has had cancer three times (breast cancer twice and most recently lung cancer); numerous surgeries and radiation treatments left her with a residual chronic pain. Since beginning her medical marijuana treatment, Dian said, “The neurological pain from the surgeries has subsided. The spasms in the area of my shoulder blade have subsided, and I did not have to have a steroid injection. And I have far less anxiety.” Full article link in bio.
Safe to say Yona has been reckless the past two months. If he knows I wrote this he'd probably come throw my phone out the window. I'll show him when he's ready.
Seizures were merciless, side effects are strangely catastrophic. It's like the tsunami on the shore which seems more destructive than the original blow in the depths of the sea.
Seeing Yona sing 'Reckless Love' is a stilling, beautiful arrow to the heart. The love of God is more reckless than this; not dangerous to us, but dangerous to Satan.
When God became flesh to die for us, it was reckless. When He broke the power of death and sin, it smashed bondage in half. When He resurrected from the grave, it defied science, it confounded nature, it twisted the universe and opened up the power of God in a perfect pathway of salvation. To us, the reckless love of God is Life itself.
When @elenabrower and @lisa_wimberger get together you know the conversation will go in deep and vulnerable places.
Take a listen to this interview on @practice.you where we talk about the mind and body’s ability to heal from seizures and trauma.
Dr. Musil, Karina & I walked through a week’s worth of data I collected pertaining to the stressors I felt that COULD end in a seizure. Nearly everyday, I logged one, or all, of the stressors I felt during the day. I need to be transparent in saying that I felt SO dramatic with most of the stressors I logged. Most of them involved minor communications with people, and major communications held internally. Regardless of my opinion of what I wrote, Dr. Musil was elated at my diligence. Next week, the three of us are going to talk “next steps.” I need to carefully consider how I’ve felt throughout treatment thus far. What works for me, what doesn’t. It’s not like I’m laying on a couch talking about my issues each week. It’s far more clinical than that. Florescent lights and a table between my team and I doesn’t make for the most ideal environment for me. Think, think, think.
New #Keto#Class ! Is 2020 the year you want to really make changes in your life,
your diet, your health? Come to the Keto 101 Class on Saturday, Jan. 11th at 11am to learn how to do just that. Colleen of our Natural Living Dept. will teach you the basics,
give you handouts to help you get started and will bring Keto-friendly foods to try. You do NOT have to be a huge meat-eater (Colleen does not eat fish, pork, beef or lamb)
as some people think, but you can if you’d like. Lose weight quickly, clear your brain-fog, and have less pain from inflammation.$10 (Preregistration guarantees handouts and 10% off coupon). Sign up on Eventbrite.com, in the store or call 317-293-9525. If you want to quickly lose weight & feel better, consider the scientifically-proven Ketogenic Diet! #diet#health#ketogenic#ketolife#weight#bloodpressure#bloodsugar#seizures#healthclass#indy
Am Mittwochabend hatte Leni plötzlich hohes Fieber. Es stellte sich heraus, dass es das 3-Tage-Fieber war, da sie ansonsten keine Symptome hatte und nach 3 Tagen das Fieber durch einen Ausschlag ersetzt wurde. Prinzessin Süßherz tat mir so leid und wir kuschelten noch mehr als sonst. Außerdem versuchte ich mit einem kalten Waschlappen und lauwarmen Wadenwickeln das Fieber zu senken. Tagsüber funktionierte das Recht gut und nachts gab es ein Zäpfchen. .
On Wednesday night, Leni suddenly had a high fever. It turned out to be the sixth-disease, because otherwise she had no symptoms and after 3 days the fever was replaced by a rash. I felt so sorry for Princess Süßherz and we cuddled even more than usual. I also tried to lower the fever with a cold washcloth and lukewarm calf compresses. During the day the right worked well and at night there was a suppository.
. #seizures#lissencephaly#lebenmitbesonderemkind#besondereskind#specialneeds#liebe#prinzessinsüßherz#lenisjourney#specialneedsmom#sixthdisease#fieber#fever#krank#sick 😷 #Waschlappen#besonderekinder#hausmittel
Da melden wir uns wieder zurück!
Die letzte Woche ist sehr viel passiert. Am Mittwoch hatten wir unseren Kontroll-EEG-Termin im Kinder UKE. Dort warten wir bisher alle 4 Wochen, um zu schauen, ob sich etwas verändert hat. Da Lenis EEG stets gleichgeblieben ist und die Ärztin sehr zufrieden mit uns ist, wurden die Zeiten zwischen den Kontrollen jetzt verlängert und wir müssen erst in 8 Wochen wieder hin. Leider wurde ebenfalls festgestellt, dass unsere kleine Zaubermaus einen Leistenbruch hat. Ich habe es ja schon seit 14 Tagen vermutet und war bereits bei unserem Kinderarzt, der es allerdings für einen geschwollenen Lymphknoten hielt, da Leni erkältet war. Solche Sachen passieren ihm ständig und er nimmt mich als Mutter nicht für voll, weshalb wir jetzt auch den Kinderarzt wechseln werden. Es gibt doch nichts schlimmeres, als wenn du genau weißt, dass etwas nicht stimmt , du den Leistenbruch selbst in den Raum geworfen hast und du nicht ernst genommen wirst.... Laut UKE besteht bezüglich des Bruchs zur Zeit kein Handlungsbedarf. Wir sollen ein Auge drauf haben, ob er sich verschlimmert, oder wenn er Leni Schmerzen bereitet. Eine OP wird, sofern keine Notfallindikation besteht, nicht vor ihrem 1. Geburtstag erfolgen. . #seizures#lissencephaly # #lebenmitbesonderemkind#besondereskind#specialneeds#liebe#prinzessinsüßherz#lenisjourney#specialneedsmom#leistenbruch#uke#kinderukehamburg#kontrolle#sorgen
3 339 hours ago
I alerted mommy to #seizures today. For being such a good girl, I got a #treat !
Posted @withrepost • @medscape Cannabis Drug Promising for Tuberous Sclerosis Seizures
An oral formulation of highly purified cannabidiol (CBD) reduces seizures associated with tuberous sclerosis complex (TSC) by more than one third, results of a phase 3 multisite randomized trial show.
A rare genetic disorder, TSC is characterized by benign tumors that develop in many parts of the body, including the brain, where they can trigger seizures.
Seizures in young children, which manifest as repetitive spasm of the head and legs, are often the presenting symptom of the disease.
"CBD appears to be an effective medication, and a safe and well-tolerated medication, in TSC, so it gives us another treatment option in an epilepsy, where there is a significant, unmet need," study investigator Elizabeth Thiele, MD, PhD, told Medscape Medical News.
Overall, 95% of patients in the placebo group, 93% in the lower-dose group, and 100% in the higher-dose group experienced an adverse event (AE). The most common of these were diarrhea, decreased appetite, and somnolence; most AEs were mild or moderate.
This study was presented at the #AES2019 in Baltimore and is fully described on Medscape. Access the review via the link in bio.
0 313 hours ago
لطفا" ورق بزنید و عکسهای آخر ایلیا را هم ببینید...
داستان من با عنوان " مادری با فرزند مبتلا به صرع" در کانال انجمن صرع منتشر شد.
خلاصه ای از داستان را برای دوستان غیر فارسی زبان می نویسم.
به علت مشاغل مهمی که در شرکتهای بزرگی داشتم من جمله مدیر بازرگانی شرکت آلستوم سوئیس@alstom ، مدیر روابط بین الملل شرکت مپنا و مدیر روابط عمومی شرکت توانیر، تصمیم به بچه دار شدن کار راحتی نبود اما مثل هر زوج دیگری ما هم آرزوی داشتن فرزند داشتیم.
بدلیل مشکلات بارداری در پنج ماهگی تلفنی از شغلم استعفا دادم و فرزندم را طبیعی بدنیا آوردم.
لازم به ذکر است سالها طول کشید تا صرع ایلیا تشخیص داده شود و اگر کمی پزشکان به شرح حال ما گوش می کردند و قدرت تجزیه و تحلیل داشتند شاید ایلیا در همان روزهای نخست درمان میشد. بماند که پزشکان معروفی هم تشخیصهای اشتباه دادند! .
علت صرع ایلیا بعدها گلیوزی بود که در قسمت خلفی سمت راست و در بخش بینایی بدلیل ترومای تولد ایجاد شده بود. همانطور که در عکسهای آخر می بینید یک بر آمدگی روی سر ایلیا هست که همان هماتوم است که باعث خونریزی زیر کورتکس مغز شده و علت زردی بالا هم همین بود. یعنی دو مشخصه ی اصلی ترومای تولد، هماتوم و زردی بالاست که باعث تشنج می شود.
با حمایت من و همسرم و مهاجرت به هند، خوشبختانه پزشکان هندی توانستند صرع ایلیا را در چهار سالگی تشخیص دهند و از آن زمان به بعد پنج سال طول کشید تا تشنجها کنترل شوند.
در سه مرحله از زندگی ایلیا به مرگ نزدیک شد. در ده روزگی وقتی به کما رفت، در نه ماهگی وقتی با قند زیر هجده ،بیهوش و بیجان شد و باعث تشخیص اشتباه پزشکان به نقص متابولیک در ایلیا شد و در ۹ سالگی وقتی تشنج پنج ساعته ی استاتوس را تجربه کرد.
امروز ایلیا سیزده ساله و بیش از سه سال است که تشنجهایش کنترل شده است. او مسلط به زبان انگلیسی است زیرا از سه سالگی در هند برد کمبریج را آغاز کرده و در ادامه در ایران در مدرسه ی بین المللی تهران به انگلیسی درس می خواند با همراهی من و پدرش اهداف مشخصی را در زندگی دنبال می کند و البته که تلاش ما به عنوان والدین مهم است و نه نتیجه.
نکته: همزمان با ثبت نام ایلیا در مدرسه ی بین المللی وی ورو @vivero_internationalدر هندوستان، خودم هم تحصیلاتم را در مقطع فوق لیسانس تکمیل کردم...
ممنون که وقت گذاشتید و متن را خواندید. با سپاس مادر ایلیا💜
I have to say; there are many days where it feels as if I am a broken record....
I have been abused in so many ways with adding on everyday of Epileptic Seizures....
There are days where I just break down and cry....
-Duchess of Epilepsy
If you suffer from epilepsy and find this post, please read!
We went to the neurologist today and here’s the news:
Natalie is still having some abnormal spikes from the left temporal lobe, but with the right out of the picture, the RNS implant can do it’s job and stop the seizures!
She is part of an elite worldwide group (29 people) with the implant and a successful temporal lobectomy.
The first pictures is what a seizure looks like. Top 2 rows are the right temporal lobe, bottom 2 are left. The right side was instigating most of the seizures and then the left got involved.
2nd and 3rd pics are current. Left is spiking, RNS treats (blue squares) and the abnormal brain waves stop. Right side is virtually flat, all normal!
The 4th picture is an overview from when the RNS was implanted and all of the treatments thereafter. It was firing 2000-6000 times per day. This is why the battery was depleted in 18 months, instead of 3-5 years. On the far right, you can see the huge drop after the surgery.
EPILEPSY SUFFERERS: Natalie had an RNS implant in April 2018 to treat complex partial seizures. She was still suffering from 5-10 seizures per week and the implant was not able to treat them.
After 18 months of recording from the RNS, the doctors were fairly confident the right temporal lobe was causing most of the seizures. She had a right temporal lobe resection last month, November 2019.
There have been 29 people worldwide that have an RNS implant with a temporal lobectomy.
There is hope! Talk to your doctor about RNS before any type of resection. The RNS implant can act as a long term video-EEG study, although that’s not it’s primary purpose. If you have any questions, please message us. Thank you!
Rest In Peace Jarad Anthony Higgins Professionally known as @juicewrld999 💔😢🙏🏽 The Singer/Songwriter 🎶 Born in Chicago, Illinois was best known for his hit singles "All Girls Are the Same" and "Lucid Dreams" Which landed him a recording contract with @lilbibby_ Grade A Productions and Interscope Records 📀_____________________________________________________________