Stories about #dravetsyndrome

Instagram #dravetsyndrome hashtag medias

1) A dose ranging safety and pharmacokinetic study of Cannabidiol (CBD) in children with Dravet Syndrome (GWPCARE1) 
In this research study, the children ages from 4-10 were observed closely after giving them increasing doses of CBD. It was 4 week course.

Side effects: Decreased appetite, sedation, fever.

Result: The children were said to have tolerated the different doses well.

2) An Update on Safety and Side Effects of Cannabidiol: A Review of Clinical Data and Relevant Animal Studies

In this study, it was found that  although side effects like changes in appetite, diarrhea, and fatigue did exist in children prescribed CBD Oil, these effects were fewer and mild as compared to conventional medications used to treat the same conditions.

Any questions/ suggestions ?
Please comment below 👇

@cbdoilbenefits

1) A dose ranging safety and pharmacokinetic study of Cannabidiol (CBD) in children with Dravet Syndrome (GWPCARE1) In this research study, the children ages from 4-10 were observed closely after giving them increasing doses of CBD. It was 4 week course. Side effects: Decreased appetite, sedation, fever. Result: The children were said to have tolerated the different doses well. 2) An Update on Safety and Side Effects of Cannabidiol: A Review of Clinical Data and Relevant Animal Studies In this study, it was found that although side effects like changes in appetite, diarrhea, and fatigue did exist in children prescribed CBD Oil, these effects were fewer and mild as compared to conventional medications used to treat the same conditions. Any questions/ suggestions ? Please comment below 👇 @cbdoilbenefits

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Simple gestures can make a world of difference
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#createyourhappy #smileonpurpose #smilingiscontagious #rockyourjourney
#epilepsywarriors #reallifesuperheroes #specialneedsmoms #specialneedsdads #ourkiddosrock #whatisperfectanyway #thisisourtopia #whatsyourtopia #epilepsy #seizures #funcolorfuluniquecomfyfunctional #specialneedsparents #raredisease #specialneedsawareness #LGS #dravetsyndrome #scn8a #nillynoggin #apparelwithamission #hannahtopiallc #hannahtopia #thankyournursetoday #nursesrock #thankgodfornurses #ournursesgoaboveandbeyond #roadtrip
Hi everyone ❤️
Me and Mark are going to be tackling the 3 peaks challenge in August 2019 to raise money for Dravets Syndrome UK. This is a cause personal to us following Marks baby cousins life-changing diagnosis.

Dravets Syndrome is a rare and catastrophic form of intractable epilepsy that begins in a baby's first year of life with frequent and prolonged seizures. Treatment options are limited, and constant care severely impacts the patients and family's life. Patients face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures and seizure related accidents.

The challenge involves climbing the 3 highest mountains in England, Scotland and Wales - in one go! This is way bigger than anything we have done before, involving 15 hours hiking on steep inclines and descents, whilst dealing with sleep deprivation and altitude changes, and reaching heights of up to 1345m.
Please help us support Dravet Syndrome UK's research into a cure for patients and families like that of Emily's - we will be forever grateful for any donation made, no matter how big or small ❤️ www.justgiving.com/fundraising/markandingrid

#dravetsyndrome #dravetsyndromeawareness #dravetsyndromeuk #fundraising #3peakschallenge

Hi everyone ❤️ Me and Mark are going to be tackling the 3 peaks challenge in August 2019 to raise money for Dravets Syndrome UK. This is a cause personal to us following Marks baby cousins life-changing diagnosis. Dravets Syndrome is a rare and catastrophic form of intractable epilepsy that begins in a baby's first year of life with frequent and prolonged seizures. Treatment options are limited, and constant care severely impacts the patients and family's life. Patients face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures and seizure related accidents. The challenge involves climbing the 3 highest mountains in England, Scotland and Wales - in one go! This is way bigger than anything we have done before, involving 15 hours hiking on steep inclines and descents, whilst dealing with sleep deprivation and altitude changes, and reaching heights of up to 1345m. Please help us support Dravet Syndrome UK's research into a cure for patients and families like that of Emily's - we will be forever grateful for any donation made, no matter how big or small ❤️ www.justgiving.com/fundraising/markandingrid #dravetsyndrome  #dravetsyndromeawareness  #dravetsyndromeuk  #fundraising  #3peakschallenge 

Neebo by @daatrics has opened up preorders! This is definitely on my must have list for Adeline and others with epilepsy just because the range for a wearable pulse and heart rate. Plus more!
Link in Bio for $10 off your pre-order. ( https://neebomonitor.com/qul2/neebo10 )The band is currently on average will fit up to age 5. They are looking into expandable to make it last even longer!! This post is in no way sponsored by Neebo. Just sharing another device we will be adding to our collection. Hopefully this works for many more in need! #dravetsyndrome #specialneedsmom #lifesaving
#epilepsy #wearablepulseox #wearableheartrate

Neebo by @daatrics has opened up preorders! This is definitely on my must have list for Adeline and others with epilepsy just because the range for a wearable pulse and heart rate. Plus more! Link in Bio for $10 off your pre-order. ( https://neebomonitor.com/qul2/neebo10 )The band is currently on average will fit up to age 5. They are looking into expandable to make it last even longer!! This post is in no way sponsored by Neebo. Just sharing another device we will be adding to our collection. Hopefully this works for many more in need! #dravetsyndrome  #specialneedsmom  #lifesaving  #epilepsy  #wearablepulseox  #wearableheartrate 

World-Changer: Leonel⁣
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Leonel has a rare & intractable form of epilepsy called Dravet Syndrome. Leonel’s seizures are unpredictable and difficult to control. This means he requires constant supervision in case he has a seizure event. When seizures occur, they often have big physical & emotional impacts. Needless to say, Dravet Syndrome has a profound impact on Leonel, but also affects his entire family.⁣
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in 2017, Leonel's family initiated the process to get a Seizure Assistance Dog from @4pawsforability. Their primary goal is to give Leonel the freedom & independence to just be a kid, while keeping him safe when a seizure occurs.⁣
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In October of 2019, Leonel's family will travel to Xenia, Ohio. During the two week trip, they’ll meet their dog, learn how to properly handle him/her, and establish a bond that will serve as the foundation to the support the dog will bring to Leonel & his family. ⁣
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This One Mission Fund was started with hope of eliciting support on this journey. These highly specialized trained dogs do not come cheap. Additionally, the travel & related expenses for a two week trip to Ohio are significant.⁣
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To support Leonel and his family and to learn more: https://onemission.fund/support/4-paws-for-leonel/⁣
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#onemissionlove #onemission #fundraisingfriday #fundraising #4pawsforability #4pawsforleonel #causes #donate #purchasewithpurpose #shopforacause #whatsyourmission #dravetsyndrome ⁣
#socialgood #dogood #giveback #goodcause

World-Changer: Leonel⁣ *⁣ Leonel has a rare & intractable form of epilepsy called Dravet Syndrome. Leonel’s seizures are unpredictable and difficult to control. This means he requires constant supervision in case he has a seizure event. When seizures occur, they often have big physical & emotional impacts. Needless to say, Dravet Syndrome has a profound impact on Leonel, but also affects his entire family.⁣ *⁣ in 2017, Leonel's family initiated the process to get a Seizure Assistance Dog from @4pawsforability. Their primary goal is to give Leonel the freedom & independence to just be a kid, while keeping him safe when a seizure occurs.⁣ *⁣ In October of 2019, Leonel's family will travel to Xenia, Ohio. During the two week trip, they’ll meet their dog, learn how to properly handle him/her, and establish a bond that will serve as the foundation to the support the dog will bring to Leonel & his family. ⁣ *⁣ This One Mission Fund was started with hope of eliciting support on this journey. These highly specialized trained dogs do not come cheap. Additionally, the travel & related expenses for a two week trip to Ohio are significant.⁣ *⁣ To support Leonel and his family and to learn more: https://onemission.fund/support/4-paws-for-leonel/⁣ *⁣ #onemissionlove  #onemission  #fundraisingfriday  #fundraising  #4pawsforability  #4pawsforleonel  #causes  #donate  #purchasewithpurpose  #shopforacause  #whatsyourmission  #dravetsyndrome  ⁣ #socialgood  #dogood  #giveback  #goodcause 

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It's #friday !
Get out there, RUN & have some FUN!
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#createyourhappy #nothingkeepsusdown #nevergivingup #smileonpurpose #smilingiscontagious #rockyourjourney
#epilepsywarriors #reallifesuperheroes #specialneedsmoms #specialneedsdads #ourkiddosrock #whatisperfectanyway #thisisourtopia #whatsyourtopia #epilepsy #seizures #funcolorfuluniquecomfyfunctional #specialneedsparents #raredisease #specialneedsawareness #LGS #dravetsyndrome #scn8a #nillynoggin #apparelwithamission #hannahtopiallc #hannahtopia #raredisease #angelmansyndrome #spreadawareness
Safe travels to @pixiedustgrotto and her too cute for words kiddos as they hit to interstate to make there way to their home away from home tomorrow: Disney! Did you know Amber was a special needs mom too?! And she’s a kick ass boss lady?! Yeppers!!
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Mason, who is 12 years old, has Dravet Syndrome. Dravet Syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. For those who don’t know, a seizure is a sudden, uncontrolled electrical disturbance in the brain. A seizure can cause changes in your behavior, movements or feelings, and in levels of consciousness. Unfortunately, Mason started having uncontrollable seizures at the age of 6 months, but wasn’t finally diagnosed by doctors until the age of 8. Mason has a STRONG momma, who fought for answers during that time and didn’t give up until he was finally diagnosed. Can you even imagine what a parent feels when they don’t know what’s wrong with their child? And why? It’s definitely not an easy process for doctors to make a diagnosis. But to be a child’s parent and not know how to help him or her, is beyond heartbreaking. Amber is an INSPIRATION to me and when I’m feeling down as a parent to Mimi, I know I can go to her. We’ve connected on IG and we’ve never met. And we’re only about 3 hours a part. However, this summer, I’m making it my plan to meet Amber and her amazing children/other half. She’s been there for me, the kiddos, and my small shop since the very very beginning, and honestly, I don’t know what I would do without her sweet self in my IG life.
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#disney #disneymom #disneyfriends #disneyfamily #disneysiblings #specialneedsparenting #specialneedsmom #specialneedschild #specialneedsadvocate #microcephaly #autism #autismawareness #dravetsyndrome #dravetsyndromeawareness #epilepsy #epilepsyawareness #insideout #pixarinsideout #anxiety valentinesday #bestfriends

Safe travels to @pixiedustgrotto and her too cute for words kiddos as they hit to interstate to make there way to their home away from home tomorrow: Disney! Did you know Amber was a special needs mom too?! And she’s a kick ass boss lady?! Yeppers!! . Mason, who is 12 years old, has Dravet Syndrome. Dravet Syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. For those who don’t know, a seizure is a sudden, uncontrolled electrical disturbance in the brain. A seizure can cause changes in your behavior, movements or feelings, and in levels of consciousness. Unfortunately, Mason started having uncontrollable seizures at the age of 6 months, but wasn’t finally diagnosed by doctors until the age of 8. Mason has a STRONG momma, who fought for answers during that time and didn’t give up until he was finally diagnosed. Can you even imagine what a parent feels when they don’t know what’s wrong with their child? And why? It’s definitely not an easy process for doctors to make a diagnosis. But to be a child’s parent and not know how to help him or her, is beyond heartbreaking. Amber is an INSPIRATION to me and when I’m feeling down as a parent to Mimi, I know I can go to her. We’ve connected on IG and we’ve never met. And we’re only about 3 hours a part. However, this summer, I’m making it my plan to meet Amber and her amazing children/other half. She’s been there for me, the kiddos, and my small shop since the very very beginning, and honestly, I don’t know what I would do without her sweet self in my IG life. . . . #disney  #disneymom  #disneyfriends  #disneyfamily  #disneysiblings  #specialneedsparenting  #specialneedsmom  #specialneedschild  #specialneedsadvocate  #microcephaly  #autism  #autismawareness  #dravetsyndrome  #dravetsyndromeawareness  #epilepsy  #epilepsyawareness  #insideout  #pixarinsideout  #anxiety  valentinesday #bestfriends 

We are very proud to work alongside the Epilepsy Society and excited for their upcoming studies and projects over the next few years.

Kate has been over at the Epilepsy Society for the past two weeks installing 10 new PulseGuard units into their residential homes and is due back again over the next few weeks to complete the installations and train staff.

She has had a chance to speak to the teams and find out a bit more about their current and future work.

If your on Facebook or Twitter head over to our PulseGuard pages to read about the new study being launched into personal epilepsy treatment based on your unique DNA

#PulseGuard #epilepsysociety #seizuremonitoring #epilepsy #epilepsywarrior #Dravet #dravetsyndrome #techforgood #SCN1A #heartratemonitor #seizure #seizures #seizuressuck #sudep #helpingothers #epilepsycommunity #familybuisiness #smallbusiness  #nonprofitorganization #seizurealert #epilepsyawareness #epilepsyalarms #specialneeds #clinicalstudies

We are very proud to work alongside the Epilepsy Society and excited for their upcoming studies and projects over the next few years. Kate has been over at the Epilepsy Society for the past two weeks installing 10 new PulseGuard units into their residential homes and is due back again over the next few weeks to complete the installations and train staff. She has had a chance to speak to the teams and find out a bit more about their current and future work. If your on Facebook or Twitter head over to our PulseGuard pages to read about the new study being launched into personal epilepsy treatment based on your unique DNA #PulseGuard  #epilepsysociety  #seizuremonitoring  #epilepsy  #epilepsywarrior  #Dravet  #dravetsyndrome  #techforgood  #SCN1A  #heartratemonitor  #seizure  #seizures  #seizuressuck  #sudep  #helpingothers  #epilepsycommunity  #familybuisiness  #smallbusiness   #nonprofitorganization  #seizurealert  #epilepsyawareness  #epilepsyalarms  #specialneeds  #clinicalstudies 

Happy Valentine's day all you warriors 💜 
Hope everyone has a seizure free day!
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#blytheshope #blytheshopeteam #blytheevangeline #valentinesday #dravetwarrior #epilepsywarrior #bravingthebrain #dravetsyndrome #dravetsyndromeunfiltered #dravetsyndromehasnofilter #fuckdravetsyndrome #epilepsy #seizures #resilience #faceofresilience #resilient #sheisresilience #sheisstrong #myhero #dravetsyndromeawareness #epilepsyawareness #childhoodepilepsy #raredisease
Please under my profile click the link to my web page. It is for my son’s medical campaign. A lot of informational updates have just been updated by myself. I am currently out of work for 3-5 months due to having a pretty serious spinal surgery on 2:1:2019. Please if you can, please donate. If you cannot PLEASE, pretty please share his campaign on your Facebook accounts or all of your social media accounts. I’m a combat veteran, a firefighter, a single mother to two toddlers one whom is permanently disabled with Dravet Syndrome. Collin is so grave that he was granted a wish through the Make-a-Wish foundation. Could we all pull together as a community and please help out my family. Helping is definitely by sharing his campaign with a little story. You may have the ability to reach someone who is financially able to help my sweet boy in this devastating time. #gofundme #dravetsyndrome #singlemom #running #lifting #imissmylife

Please under my profile click the link to my web page. It is for my son’s medical campaign. A lot of informational updates have just been updated by myself. I am currently out of work for 3-5 months due to having a pretty serious spinal surgery on 2:1:2019. Please if you can, please donate. If you cannot PLEASE, pretty please share his campaign on your Facebook accounts or all of your social media accounts. I’m a combat veteran, a firefighter, a single mother to two toddlers one whom is permanently disabled with Dravet Syndrome. Collin is so grave that he was granted a wish through the Make-a-Wish foundation. Could we all pull together as a community and please help out my family. Helping is definitely by sharing his campaign with a little story. You may have the ability to reach someone who is financially able to help my sweet boy in this devastating time. #gofundme  #dravetsyndrome  #singlemom  #running  #lifting  #imissmylife 

Quality of life. 
Quality of life, every day I will choose quality of life for this child over - over medicating. 
This week has seemed.... "normal". And I put that in quotes because we still have meds and therapy. She's been over a week now with no Tonic Clonic, she's having very little absence and myoclonic seizures, she's having GOOD days, she's playing with toys, she's staying awake most the day with out naps even and still being good. I don't want to jinx anything but I also am so happy I want to share! And it's been since she started drinking those drinks giving her body more of what she needs rather than just the GF pasta 3x a day. 
Praying this isn't a phase. .
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#blytheshope #blytheshopeteam #blytheevangeline #dravetwarrior #epilepsywarrior #bravingthebrain #dravetsyndrome #dravetsyndromeunfiltered #dravetsyndromehasnofilter #fuckdravetsyndrome #epilepsy #seizures #resilience #faceofresilience #resilient #sheisresilience #sheisstrong #myhero #dravetsyndromeawareness #epilepsyawareness #childhoodepilepsy #raredisease

Quality of life. Quality of life, every day I will choose quality of life for this child over - over medicating. This week has seemed.... "normal". And I put that in quotes because we still have meds and therapy. She's been over a week now with no Tonic Clonic, she's having very little absence and myoclonic seizures, she's having GOOD days, she's playing with toys, she's staying awake most the day with out naps even and still being good. I don't want to jinx anything but I also am so happy I want to share! And it's been since she started drinking those drinks giving her body more of what she needs rather than just the GF pasta 3x a day. Praying this isn't a phase. . . #blytheshope  #blytheshopeteam  #blytheevangeline  #dravetwarrior  #epilepsywarrior  #bravingthebrain  #dravetsyndrome  #dravetsyndromeunfiltered  #dravetsyndromehasnofilter  #fuckdravetsyndrome  #epilepsy  #seizures  #resilience  #faceofresilience  #resilient  #sheisresilience  #sheisstrong  #myhero  #dravetsyndromeawareness  #epilepsyawareness  #childhoodepilepsy  #raredisease 

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If drooling is a big part of your life ... Then your going to want a few Minky Cloths!
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For a limited time SAVE 15%!
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COUPON CODE:  MINKY15 through 02/17/2019 at https://hannahtopia.com/product-category/minky-cloth/
11 designs to choose from!
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What's a Minky Cloth and what the heck do we use it for?? Check out our comments below!
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#minky #droolcloth #minkydroolcloth #droolpad #epilepsideeffects #epilepsy #raredisease #epilepsysyndromesideeffects #specialneeds #specialneedswarriors #fightepilepsy #rockyourjourney #apparelwithamission #fightepilepsy #hannahtopia #LGS #dravetsyndrome #dravetwarriors #fun #colorful #whatsyourtopia #thisisourtopia #hannahtopiallc

💜 If drooling is a big part of your life ... Then your going to want a few Minky Cloths! 💜 For a limited time SAVE 15%! 💜 COUPON CODE: MINKY15 through 02/17/2019 at https://hannahtopia.com/product-category/minky-cloth/ 11 designs to choose from! 💜 What's a Minky Cloth and what the heck do we use it for?? Check out our comments below! 💜 #minky  #droolcloth  #minkydroolcloth  #droolpad  #epilepsideeffects  #epilepsy  #raredisease  #epilepsysyndromesideeffects  #specialneeds  #specialneedswarriors  #fightepilepsy  #rockyourjourney  #apparelwithamission  #fightepilepsy  #hannahtopia  #LGS  #dravetsyndrome  #dravetwarriors  #fun  #colorful  #whatsyourtopia  #thisisourtopia  #hannahtopiallc 

When you're at the Specialists, it's time to play hide and seek!  Joshie has a full schedule seeing Neurologists, his Paediatrician, Occupational and Speech Therapist, but he takes it in his stride and makes the most of clinical situations. He's a beautiful boy and keeps us all smiling despite the gravity of his condition. And thanks for supporting Josh on his Go Fund Me page to make all that possible. #lovehimtobits #monashchildrens #royalchildrenshospital #earlyintervention #dravetsyndrome #dravetwarrior #needacure #epilepsy #doggieforjosh #resilience

When you're at the Specialists, it's time to play hide and seek! Joshie has a full schedule seeing Neurologists, his Paediatrician, Occupational and Speech Therapist, but he takes it in his stride and makes the most of clinical situations. He's a beautiful boy and keeps us all smiling despite the gravity of his condition. And thanks for supporting Josh on his Go Fund Me page to make all that possible. #lovehimtobits  #monashchildrens  #royalchildrenshospital  #earlyintervention  #dravetsyndrome  #dravetwarrior  #needacure  #epilepsy  #doggieforjosh  #resilience 

This little boys name is Will. He is the grandson of a friend of mine. He was just approved for a service dog. Will has a seizure disorder called Dravets syndrome. The family has been hoping he would be approved for a while. The only problem is the dog is $17,000. They are doing several fundraisers to help with the cost. I am putting a link in my bio if anyone is interested in helping this little boy.#seizures #servicedog #fundraiser #powerlifting #sweetboy #dravetsyndrome

This little boys name is Will. He is the grandson of a friend of mine. He was just approved for a service dog. Will has a seizure disorder called Dravets syndrome. The family has been hoping he would be approved for a while. The only problem is the dog is $17,000. They are doing several fundraisers to help with the cost. I am putting a link in my bio if anyone is interested in helping this little boy.#seizures  #servicedog  #fundraiser  #powerlifting  #sweetboy  #dravetsyndrome 

MARIHUANA NË EPILEPSI?

Gjatë vitit që e lëmë pas, në treg doli ilaçi i parë me përmbajtje të kanabidiolit (CBD) me qëllim të trajtimit të epilepsisë. Bëhet fjalë për dy lloje të rënda të epilepsisë në moshën fëmijërore – sindromën Lennox-Gastaut dhe sindromën Dravet. Këto janë dy sindroma të foshnjërisë dhe fëmijërisë së hershme që karakterizohen me retardim mendor dhe zhvillimor, si edhe sulme epileptike rezistente në barna. Pra, përkundër përdorimit të 3 apo 4 barnave antiepileptike njëkohësisht, kontrollimi i sulmeve mund të jetë shumë i vështirë. Prandaj, prindërit e këtyre fëmijëve kishin filluar para shumë vitesh t’u japin fëmijëve të tyre marihuanë dhe kishin vërejtur efektin pozitiv në rrallimin e sulmeve epileptike. Pas studimeve të bëra në kushte të kontrolluara klinike, ilaçi i quajtur EPIDIOLEX (me përmbajtjen kanabidiolit) ka marrë leje nga autoritetet rregullatore që të përdoret për dy llojet e lartpërmendura të epilepsisë, te fëmijët mbi moshën 2-vjeçe.

Kjo nuk nënkupton që ky bar apo marihuana ka efekt mbi llojet e tjera të epilepsive. Po ashtu, nisja e përdorimit të EPIDIOLEXIT nuk nënkupton se barnat e tjera antiepileptike duhet të ndërpriten. Studimi i kryer në 516 fëmijë me sindromat Lennox-Gastaut dhe Dravet ka dëshmuar që shtimi i kanabidiolit barnave të tjerë të zakonshëm, ka treguar efekt në pakësimin e sulmeve epileptike.

Përgjumja, oreksi i humbur, lodhja, cilësia e dobët e gjumit, skuqja e lëkurës dhe barkqitja janë raportuar të jenë efektet më të shpeshta anësore. Zgjerimi i përdorimit të kanabidiolit në lloje të tjera të epilepsisë do të jetë i mundur pas studimeve të mirëfillta klinike. Fushat e tjera neurologjike ku marihuana tërheq interes janë: vjellja, shtimi i apetitit, dhembja neuropatike dhe spasticiteti në sklerozën multiple, kujdesi paliativ në kancere, sëmundja e Parkinsonit dhe çrregullimi i ankthit.

#marijuana #cannabidiol #epilepsy #epilepsyday #lennoxgastautsyndrome #dravetsyndrome #epilepsia #kanabis #marihuana #treatment #neurologjia #neurology 
@spitaliamerikanprishtine

MARIHUANA NË EPILEPSI? Gjatë vitit që e lëmë pas, në treg doli ilaçi i parë me përmbajtje të kanabidiolit (CBD) me qëllim të trajtimit të epilepsisë. Bëhet fjalë për dy lloje të rënda të epilepsisë në moshën fëmijërore – sindromën Lennox-Gastaut dhe sindromën Dravet. Këto janë dy sindroma të foshnjërisë dhe fëmijërisë së hershme që karakterizohen me retardim mendor dhe zhvillimor, si edhe sulme epileptike rezistente në barna. Pra, përkundër përdorimit të 3 apo 4 barnave antiepileptike njëkohësisht, kontrollimi i sulmeve mund të jetë shumë i vështirë. Prandaj, prindërit e këtyre fëmijëve kishin filluar para shumë vitesh t’u japin fëmijëve të tyre marihuanë dhe kishin vërejtur efektin pozitiv në rrallimin e sulmeve epileptike. Pas studimeve të bëra në kushte të kontrolluara klinike, ilaçi i quajtur EPIDIOLEX (me përmbajtjen kanabidiolit) ka marrë leje nga autoritetet rregullatore që të përdoret për dy llojet e lartpërmendura të epilepsisë, te fëmijët mbi moshën 2-vjeçe. Kjo nuk nënkupton që ky bar apo marihuana ka efekt mbi llojet e tjera të epilepsive. Po ashtu, nisja e përdorimit të EPIDIOLEXIT nuk nënkupton se barnat e tjera antiepileptike duhet të ndërpriten. Studimi i kryer në 516 fëmijë me sindromat Lennox-Gastaut dhe Dravet ka dëshmuar që shtimi i kanabidiolit barnave të tjerë të zakonshëm, ka treguar efekt në pakësimin e sulmeve epileptike. Përgjumja, oreksi i humbur, lodhja, cilësia e dobët e gjumit, skuqja e lëkurës dhe barkqitja janë raportuar të jenë efektet më të shpeshta anësore. Zgjerimi i përdorimit të kanabidiolit në lloje të tjera të epilepsisë do të jetë i mundur pas studimeve të mirëfillta klinike. Fushat e tjera neurologjike ku marihuana tërheq interes janë: vjellja, shtimi i apetitit, dhembja neuropatike dhe spasticiteti në sklerozën multiple, kujdesi paliativ në kancere, sëmundja e Parkinsonit dhe çrregullimi i ankthit. #marijuana  #cannabidiol  #epilepsy  #epilepsyday  #lennoxgastautsyndrome  #dravetsyndrome  #epilepsia  #kanabis  #marihuana  #treatment  #neurologjia  #neurology  @spitaliamerikanprishtine

El despertador de hoy fue una convulsión de 5minutos . Aunque ya sean varias las convulsiones que ha tenido Yenmar me sigue sorprendiendo cada crisis . Tomamos temperatura al finalizar la convulsión y tiene 38 . 
Ahora son de menos minutos algunas durán segundos pero de igual manera te toman por sorpresa y más cuando estás dormida. 
Desde ayer hemos estado con consultas médicas y de una semana para acá tenemos un plan de estudios médicos que cumplir con Nuestra Yenmar 👸. Después que tengamos estudios y resultados y plan de acción les comentaré .

El síndrome de Dravet . Rechaza todo tipo de infección y la manera de demostrarlo es con convulsiones😞

Esperando que se reponga está temblorosa y algo adormecida. No tuvimos que usar stesolid la convulsión cedió sola. 🙏

#sindromededravet
#epilepsiarefractaria
#dravetsyndrome
#epilepsy
#conviviendocondravet

El despertador de hoy fue una convulsión de 5minutos . Aunque ya sean varias las convulsiones que ha tenido Yenmar me sigue sorprendiendo cada crisis . Tomamos temperatura al finalizar la convulsión y tiene 38 . Ahora son de menos minutos algunas durán segundos pero de igual manera te toman por sorpresa y más cuando estás dormida. Desde ayer hemos estado con consultas médicas y de una semana para acá tenemos un plan de estudios médicos que cumplir con Nuestra Yenmar 👸. Después que tengamos estudios y resultados y plan de acción les comentaré . El síndrome de Dravet . Rechaza todo tipo de infección y la manera de demostrarlo es con convulsiones😞 Esperando que se reponga está temblorosa y algo adormecida. No tuvimos que usar stesolid la convulsión cedió sola. 🙏 #sindromededravet  #epilepsiarefractaria  #dravetsyndrome  #epilepsy  #conviviendocondravet 

Focus på: Epilepsi
Den 11 februari var det #världsepilepsidagen 
https://www.nfsd.se/om-sallsynta-diagnoser/aktuellt/nyheter/focus-pa-epilepsi/
#sällsyntaliv #epilepsi #dravetsyndrome #Aicardissyndrome #angelmanssyndrome #Aspartylglukosaminuri #DiGeorgessyndrome  #FragiltXsyndrome #Gaucherssjukdom #GLUT1bristsyndromet #Joubertssyndrome #Krabbessjukdom #LennoxGastautsyndrome #WolfHirschhornssyndrome #MowatWilsonssyndrome #Rettssyndrome #RubinsteinTaybissyndrome #Sanfilippossjukdom #Optikushypoplasi #Sotossyndrome #SpielmeyerVogtssjukdom #SturgeWeberssyndrome #tuberösskleroscomplex
Hon är 1/81000 i Sverige som lever med epilepsi. Hennes epilepsi är Terapiresistent läkemedel har ingen eller mycket begränsad effekt. Hon kommer att få leva med sin sjukdom så länge hon lever. 1/5 barn med hennes specifika diagnos uppnår aldrig vuxen ålder. Vi anpassar livet efter henne.. det är det minsta vi kan göra.. Hon lär oss mer om livet än någon annan. Vad som är viktigt. Vad som inte har någon som helst betydelse. Hon vet hur man njuter av livet fullt ut. Varje dag med henne är ett äventyr. Hon har villkorslös KÄRLEK som räcker till alla. Hon är den starkaste människa jag känner. Hon är min hjälte 💜. #alltomepilepsi #världsepilepsidagen #dravetsyndrome #dravetsyndrom #terapiresistentepilepsi #teamjossan

Hon är 1/81000 i Sverige som lever med epilepsi. Hennes epilepsi är Terapiresistent läkemedel har ingen eller mycket begränsad effekt. Hon kommer att få leva med sin sjukdom så länge hon lever. 1/5 barn med hennes specifika diagnos uppnår aldrig vuxen ålder. Vi anpassar livet efter henne.. det är det minsta vi kan göra.. Hon lär oss mer om livet än någon annan. Vad som är viktigt. Vad som inte har någon som helst betydelse. Hon vet hur man njuter av livet fullt ut. Varje dag med henne är ett äventyr. Hon har villkorslös KÄRLEK som räcker till alla. Hon är den starkaste människa jag känner. Hon är min hjälte 💜. #alltomepilepsi  #världsepilepsidagen  #dravetsyndrome  #dravetsyndrom  #terapiresistentepilepsi  #teamjossan 

Austen has had 11 days of seizure clusters. I don’t say this for pity, just to let you know just how exhausted we all are.
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Yesterday I needed to fold laundry, and scrub the toilet, and sweep and mop the floors. I hadn’t done dishes all day.
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But Austen wanted to cuddle, so I sat on the couch and watched Law and Order. I held my baby and kissed her forehead. I hugged her close and wiggled her toes.
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I do the same to Atlas in the mornings, when my sleepy eyed boy wakes up before dawn and wants to sit with me while I read.
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I try to cherish these moments, I know some day they won’t want them. Addi is already growing out of it. I have to get these in while I can.
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Because in my heart I know these are the best years of my life.
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#alifeofintention #booksandcoffee #blogginggals #butfirstcoffee #coloradosprings #coloradomom #discoverunder100k #documentlife #dravetsyndrome #frugal #hotmessmom #homemade #inspireyourinstagram #letthembelittle #littlemomentslikethese #liveauthentic #livesimply #momentsofmine  #morningslikethese  #nothingisordinary  #persevere  #parenthood  #seekthesimplicity  #thestoryofeveryday  #visualsoflife

Austen has had 11 days of seizure clusters. I don’t say this for pity, just to let you know just how exhausted we all are. . Yesterday I needed to fold laundry, and scrub the toilet, and sweep and mop the floors. I hadn’t done dishes all day. . But Austen wanted to cuddle, so I sat on the couch and watched Law and Order. I held my baby and kissed her forehead. I hugged her close and wiggled her toes. . I do the same to Atlas in the mornings, when my sleepy eyed boy wakes up before dawn and wants to sit with me while I read. . I try to cherish these moments, I know some day they won’t want them. Addi is already growing out of it. I have to get these in while I can. . Because in my heart I know these are the best years of my life. . . . . . . #alifeofintention  #booksandcoffee  #blogginggals  #butfirstcoffee  #coloradosprings  #coloradomom  #discoverunder100k  #documentlife  #dravetsyndrome  #frugal  #hotmessmom  #homemade  #inspireyourinstagram  #letthembelittle  #littlemomentslikethese  #liveauthentic  #livesimply  #momentsofmine  #morningslikethese  #nothingisordinary  #persevere  #parenthood  #seekthesimplicity  #thestoryofeveryday  #visualsoflife 

#Repost @hel.lu with @get_repost
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Vaikka vettä satoi niin aamu alkoi auringonpaisteessa, niinkuin jokainen aamu täällä!Tänään on kansainvälinen epilepsia päivä! Today is international epilepsy day 🌹🌸🌼 On myös paljon koiria jotka työskentelevät sairaiden ihmisten kanssa, opaskoiria, diabetes koiria, epilepsia koiria, autisti koiria jne. Epilepsia koira pystyy haistamaan kohtaukset ennen niiden tuloa ja ilmoittamaan asiasta. Autisti koirat lisäävät autistin ihmisen kosketus sietokykyä ja lähellä oloa. Mukavaa päivää kaikille ⚘@epilepsialiitto @intepilepsyday @harvinaisetverkosto @kehitysvammaliitto #näytäettävälität #happylife #special #kid #käsikädessä #osaatkoauttaa #dravetsyndrome #epilepsia #epilepsy #internationalepilepsyday #mykid #dog #sunshine #snow #nature #naturephoto #winter #epilepsyday #erityinen #taivaanrannanmaalari #mainettaanparempi #pyhtää #pyhtaa #beautyofsuomi #finland_frames #112päivä #jokaisellapilvelläonhopeareunus #harvinaiset

#Repost  @hel.lu with @get_repost ・・・ Vaikka vettä satoi niin aamu alkoi auringonpaisteessa, niinkuin jokainen aamu täällä!Tänään on kansainvälinen epilepsia päivä! Today is international epilepsy day 🌹🌸🌼 On myös paljon koiria jotka työskentelevät sairaiden ihmisten kanssa, opaskoiria, diabetes koiria, epilepsia koiria, autisti koiria jne. Epilepsia koira pystyy haistamaan kohtaukset ennen niiden tuloa ja ilmoittamaan asiasta. Autisti koirat lisäävät autistin ihmisen kosketus sietokykyä ja lähellä oloa. Mukavaa päivää kaikille ⚘@epilepsialiitto @intepilepsyday @harvinaisetverkosto @kehitysvammaliitto #näytäettävälität  #happylife  #special  #kid  #käsikädessä  #osaatkoauttaa  #dravetsyndrome  #epilepsia  #epilepsy  #internationalepilepsyday  #mykid  #dog  #sunshine  #snow  #nature  #naturephoto  #winter  #epilepsyday  #erityinen  #taivaanrannanmaalari  #mainettaanparempi  #pyhtää  #pyhtaa  #beautyofsuomi  #finland_frames  #112päivä  #jokaisellapilvelläonhopeareunus  #harvinaiset 

Vaikka vettä satoi niin aamu alkoi auringonpaisteessa, niinkuin jokainen aamu täällä!Tänään on kansainvälinen epilepsia päivä! Today is international epilepsy day 🌹🌸🌼 On myös paljon koiria jotka työskentelevät sairaiden ihmisten kanssa, opaskoiria, diabetes koiria, epilepsia koiria, autisti koiria jne. Epilepsia koira pystyy haistamaan kohtaukset ennen niiden tuloa ja ilmoittamaan asiasta. Autisti koirat lisäävät autistin ihmisen kosketus sietokykyä ja lähellä oloa. Mukavaa päivää kaikille ⚘@epilepsialiitto @intepilepsyday @harvinaisetverkosto @kehitysvammaliitto #näytäettävälität #happylife #special #kid #käsikädessä #osaatkoauttaa #dravetsyndrome #epilepsia #epilepsy #internationalepilepsyday #mykid #dog #sunshine #snow #nature #naturephoto #winter #epilepsyday #erityinen #taivaanrannanmaalari #mainettaanparempi #pyhtää #pyhtaa #beautyofsuomi #finland_frames #112päivä #jokaisellapilvelläonhopeareunus #harvinaiset

Vaikka vettä satoi niin aamu alkoi auringonpaisteessa, niinkuin jokainen aamu täällä!Tänään on kansainvälinen epilepsia päivä! Today is international epilepsy day 🌹🌸🌼 On myös paljon koiria jotka työskentelevät sairaiden ihmisten kanssa, opaskoiria, diabetes koiria, epilepsia koiria, autisti koiria jne. Epilepsia koira pystyy haistamaan kohtaukset ennen niiden tuloa ja ilmoittamaan asiasta. Autisti koirat lisäävät autistin ihmisen kosketus sietokykyä ja lähellä oloa. Mukavaa päivää kaikille ⚘@epilepsialiitto @intepilepsyday @harvinaisetverkosto @kehitysvammaliitto #näytäettävälität  #happylife  #special  #kid  #käsikädessä  #osaatkoauttaa  #dravetsyndrome  #epilepsia  #epilepsy  #internationalepilepsyday  #mykid  #dog  #sunshine  #snow  #nature  #naturephoto  #winter  #epilepsyday  #erityinen  #taivaanrannanmaalari  #mainettaanparempi  #pyhtää  #pyhtaa  #beautyofsuomi  #finland_frames  #112päivä  #jokaisellapilvelläonhopeareunus  #harvinaiset 

Today Feb 11th is World epilepsy day. Purple is the international color representing epilepsi awareness so that’s what we wear today. For everyone struggeling with epilepsy, most of all for my little brother and our family who has lived with this terrible disease since Sept 3rd 1979. 💜 Never give up 💪🏻💜! #keepfighting #nevergiveup #dravetsyndrome #epilepsy #worldepilepsyday #alltomepilepsi #purple #wearpurple #casalltraining

Today Feb 11th is World epilepsy day. Purple is the international color representing epilepsi awareness so that’s what we wear today. For everyone struggeling with epilepsy, most of all for my little brother and our family who has lived with this terrible disease since Sept 3rd 1979. 💜 Never give up 💪🏻💜! #keepfighting  #nevergiveup  #dravetsyndrome  #epilepsy  #worldepilepsyday  #alltomepilepsi  #purple  #wearpurple  #casalltraining 

Elias is proudly autographing the February  issue of @marylandleaf magazine we got today at @curaleaf_maryland . Thank you Jackie, Honey and the whole Curaleaf MD family. Every visit is a pleasure, and I always leave with a warm heart and a smile 😘😘😘
#cannabiscommunity #cannabissaveslives #dravetsyndrome

Elias is proudly autographing the February issue of @marylandleaf magazine we got today at @curaleaf_maryland . Thank you Jackie, Honey and the whole Curaleaf MD family. Every visit is a pleasure, and I always leave with a warm heart and a smile 😘😘😘 #cannabiscommunity  #cannabissaveslives  #dravetsyndrome 

35 minute seizure the other day..⁣
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i was in a cheerful mood on my way home thinking today was a good day... but then it all crashed down so quickly. i just got over the flu so i was out of commission for a few days. i took extreme measures to make sure i didn’t spread my germs to june. without jinxing ourselves, i think we got through it okay. i had a lot of things backed up that i was working on, but i’m slowly getting back on track. we found a new dentist that we like, i was able to get to my job for a couple hours, did a costco run and got me and hubby some cool sonicare toothbrushes that were on sale, finally filled our van tires with air because the tire light has been on, and sold a few used items of things we had laying around the house. i would say it was pretty productive and things were looking up. ⁣
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i walk into my house, greet everyone with things in my hands and notice june doesn’t look right. she’s looking at me but not saying anything. she usually says “hi mommy!” “what’s up mommy?!” but she was just kind of looking no where specific. i immediately knew she was having a seizure. the meds didn’t work this time.. the seizure was ugly. ⁣
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how can life change so fast? in an instant? this happens to us a lot. i don’t understand how this is even allowed. how do you let a three year old not enjoy jumping on the bed without a seizure? how can she possibly be suffering this much? it hurts mommy. it hurts daddy. it hurts EVERYONE who loves her. the worst is that dravet syndrome continues to attack her and i can’t do a thing about it. i thought i was going to lose her that day. how many times do i have to feel this as a mom before a cure is found? how many times does she have to lose parts of her life to this horrible horrible disease???? i have to dry my tears, pick myself back up and keep going. things need to get done and life needs to keep going. june, i am sorry. mommy loves you and i will work tirelessly to keep giving you your best life. i promise you.⁣
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#dravetsyndrome #dravetsyndromeawareness #dravet #epilepsy #epilepsyawareness #liveandlovejune

35 minute seizure the other day..⁣ ⁣ i was in a cheerful mood on my way home thinking today was a good day... but then it all crashed down so quickly. i just got over the flu so i was out of commission for a few days. i took extreme measures to make sure i didn’t spread my germs to june. without jinxing ourselves, i think we got through it okay. i had a lot of things backed up that i was working on, but i’m slowly getting back on track. we found a new dentist that we like, i was able to get to my job for a couple hours, did a costco run and got me and hubby some cool sonicare toothbrushes that were on sale, finally filled our van tires with air because the tire light has been on, and sold a few used items of things we had laying around the house. i would say it was pretty productive and things were looking up. ⁣ ⁣ i walk into my house, greet everyone with things in my hands and notice june doesn’t look right. she’s looking at me but not saying anything. she usually says “hi mommy!” “what’s up mommy?!” but she was just kind of looking no where specific. i immediately knew she was having a seizure. the meds didn’t work this time.. the seizure was ugly. ⁣ ⁣ how can life change so fast? in an instant? this happens to us a lot. i don’t understand how this is even allowed. how do you let a three year old not enjoy jumping on the bed without a seizure? how can she possibly be suffering this much? it hurts mommy. it hurts daddy. it hurts EVERYONE who loves her. the worst is that dravet syndrome continues to attack her and i can’t do a thing about it. i thought i was going to lose her that day. how many times do i have to feel this as a mom before a cure is found? how many times does she have to lose parts of her life to this horrible horrible disease???? i have to dry my tears, pick myself back up and keep going. things need to get done and life needs to keep going. june, i am sorry. mommy loves you and i will work tirelessly to keep giving you your best life. i promise you.⁣ ⁣ #dravetsyndrome  #dravetsyndromeawareness  #dravet  #epilepsy  #epilepsyawareness  #liveandlovejune 

This is William Capps. William Capps is a 15 month old with Dravet Syndrome, a catastrophic form of epilepsy with developmental delays, both physical and cognitive. He has already had countless hours long seizures and hospitalizations, including intubations. .
Please click the following link and help in any way that you can. Please share this post and let’s get this strong child the help he needs!
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https://www.firstgiving.com/fundraiser/kayci-capps/Warriorwill
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#strongwilled #findacure #help #rebelram19 #ram #ramrebel #ramrebelnation #raptor #fordraptor #offroad #offroading #truck #truckstuff #kidsfirst #hullfamlife #willcaps #strongkids #supportdog #servicedog #serviceanimals #dravetsyndrome #dravetsyndromeawareness

This is William Capps. William Capps is a 15 month old with Dravet Syndrome, a catastrophic form of epilepsy with developmental delays, both physical and cognitive. He has already had countless hours long seizures and hospitalizations, including intubations. . Please click the following link and help in any way that you can. Please share this post and let’s get this strong child the help he needs! . https://www.firstgiving.com/fundraiser/kayci-capps/Warriorwill . #strongwilled  #findacure  #help  #rebelram19  #ram  #ramrebel  #ramrebelnation  #raptor  #fordraptor  #offroad  #offroading  #truck  #truckstuff  #kidsfirst  #hullfamlife  #willcaps  #strongkids  #supportdog  #servicedog  #serviceanimals  #dravetsyndrome  #dravetsyndromeawareness 

Showing a painting and one of my prints at Threads exhibition again this year. March 6-16th. The organisers kindly asked me to choose the charity they’re supporting this time so a percentage from sales of work will go to Dravet Syndrome UK. The charity offers support to parents and carers of children suffering from Dravet Syndrome. Being a rare and devastating illness the charity offered advice to me when I couldn’t get information from the hospital and it helps to raise awareness of the condition in the hope of finding better medications and funding more medical research. If you’re interested in coming along to the Private view please let me know.  #dravetsyndrome #dravetsyndromeawareness #dravetsyndromeuk #internationalwomensday #womenartists

Showing a painting and one of my prints at Threads exhibition again this year. March 6-16th. The organisers kindly asked me to choose the charity they’re supporting this time so a percentage from sales of work will go to Dravet Syndrome UK. The charity offers support to parents and carers of children suffering from Dravet Syndrome. Being a rare and devastating illness the charity offered advice to me when I couldn’t get information from the hospital and it helps to raise awareness of the condition in the hope of finding better medications and funding more medical research. If you’re interested in coming along to the Private view please let me know. #dravetsyndrome  #dravetsyndromeawareness  #dravetsyndromeuk  #internationalwomensday  #womenartists 

FLASH SALE today and tomorrow!!!20% off our camo bags on our Etsy shop. CODE: CAMO20 Tag your friends and family!! Link in bio and comments.
#pinkandgrayus #carryyourmedsinstyle #type1diabetes #typeonediabetes #t1d #insulinpump #t1mom #t1kids #foodallergies #foodallergymom #peanutfree #treenutfree #top8free #top8allergenfree #milkfree #eggfree #wheatfree #soyfree #epipen #auviq #epilepsy #epilepsywarrior #dravetsyndrome

FLASH SALE today and tomorrow!!!20% off our camo bags on our Etsy shop. CODE: CAMO20 Tag your friends and family!! Link in bio and comments. #pinkandgrayus  #carryyourmedsinstyle  #type1diabetes  #typeonediabetes  #t1d  #insulinpump  #t1mom  #t1kids  #foodallergies  #foodallergymom  #peanutfree  #treenutfree  #top8free  #top8allergenfree  #milkfree  #eggfree  #wheatfree  #soyfree  #epipen  #auviq  #epilepsy  #epilepsywarrior  #dravetsyndrome 

So in the week it was confirmed that Teddy has #dravetsyndrome this is something that was always spoken about around Teddy but we was always told there was a possible chance he might not have it. Unfortunately this is not the case for Teddy, it’s something that he will never grow out of and will be in our life forever. 
The seizures continue to be very difficult to control, throughout childhood, but should hopefully calm when his a adult. Learning difficulties are very common and can range from mild to very severe. These difficulties usually persist and only rarely improve. As the condition progresses most children become more unsteady on their feet, and Teddy will need a adapted pushchair/wheelchair. Children with Dravet syndrome will need to be cared for throughout their lives. (Which I don’t mind because his never having a girlfriend and moving out anyway because I’m definitely going to be that mum that no girl is ever good enough for him) I knew they always told us that Teddy would have this forever but there was always a bit of me that thought oh maybe they might have got it wrong, so for it to actually be confirmed in the week was heartbreaking. Dravet syndrome is the most resistant to epilepsy medication which is why we are still trying out different meds nearly 3 years later. I couldn’t be any prouder of my little boy 🌟

So in the week it was confirmed that Teddy has #dravetsyndrome  this is something that was always spoken about around Teddy but we was always told there was a possible chance he might not have it. Unfortunately this is not the case for Teddy, it’s something that he will never grow out of and will be in our life forever. The seizures continue to be very difficult to control, throughout childhood, but should hopefully calm when his a adult. Learning difficulties are very common and can range from mild to very severe. These difficulties usually persist and only rarely improve. As the condition progresses most children become more unsteady on their feet, and Teddy will need a adapted pushchair/wheelchair. Children with Dravet syndrome will need to be cared for throughout their lives. (Which I don’t mind because his never having a girlfriend and moving out anyway because I’m definitely going to be that mum that no girl is ever good enough for him) I knew they always told us that Teddy would have this forever but there was always a bit of me that thought oh maybe they might have got it wrong, so for it to actually be confirmed in the week was heartbreaking. Dravet syndrome is the most resistant to epilepsy medication which is why we are still trying out different meds nearly 3 years later. I couldn’t be any prouder of my little boy 🌟

So in the week it was confirmed that Teddy has #dravetsyndrome this is something that was always spoken about around Teddy but we was always told there was a possible chance he might not have it. Unfortunately this is not the case for Teddy, it’s something that he will never grow out of and will be in our life forever. 
The seizures continue to be very difficult to control, throughout childhood, but should hopefully calm when his a adult. Learning difficulties are very common and can range from mild to very severe. These difficulties usually persist and only rarely improve. As the condition progresses most children become more unsteady on their feet, and Teddy will need a adapted pushchair/wheelchair. Children with Dravet syndrome will need to be cared for throughout their lives. (Which I don’t mind because his never having a girlfriend and moving out anyway because I’m definitely going to be that mum that no girl is ever good enough for him) I knew they always told us that Teddy would have this forever but there was always a bit of me that thought oh maybe they might have got it wrong, so for it to actually be confirmed in the week was heartbreaking. Dravet syndrome is the most resistant to epilepsy medication which is why we are still trying out different meds nearly 3 years later. I couldn’t be any prouder of my little boy 🌟

So in the week it was confirmed that Teddy has #dravetsyndrome  this is something that was always spoken about around Teddy but we was always told there was a possible chance he might not have it. Unfortunately this is not the case for Teddy, it’s something that he will never grow out of and will be in our life forever. The seizures continue to be very difficult to control, throughout childhood, but should hopefully calm when his a adult. Learning difficulties are very common and can range from mild to very severe. These difficulties usually persist and only rarely improve. As the condition progresses most children become more unsteady on their feet, and Teddy will need a adapted pushchair/wheelchair. Children with Dravet syndrome will need to be cared for throughout their lives. (Which I don’t mind because his never having a girlfriend and moving out anyway because I’m definitely going to be that mum that no girl is ever good enough for him) I knew they always told us that Teddy would have this forever but there was always a bit of me that thought oh maybe they might have got it wrong, so for it to actually be confirmed in the week was heartbreaking. Dravet syndrome is the most resistant to epilepsy medication which is why we are still trying out different meds nearly 3 years later. I couldn’t be any prouder of my little boy 🌟

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💜#HAPPINESSHEALS 💜
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At hannahtopia.com we send gifts that are colorful, comfy, fun and functional to help brighten the lives of those living with medical challenges!
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As one Mom recently stated ... "I don't think that I've ever been so excited to open the mail!  This is truly a fabulous idea for our special kiddos to have such cool gear 😘"
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Visit our website, enter your email in the pop-up and receive your welcome coupon!
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Our kiddos eyes light up when they receive a gift in the mail 😁😀😁!
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#hannahtopiallc #hannahtopia #apparelwithamission #nillynoggin #epilepsy #eeg #eeghat #lennoxgastautsyndrome #LGS #dravetsyndrome #dravetwarriors #fun #coverupthescary #colorful #fightepilepsy #pillowcases #specialneeds #specialneedsmom #comfyblankets #seizures #gtubes #specialneedsdads #blingyourbelly #minkydroolcloth #drool #specialneedsawareness #smile

° 💜#HAPPINESSHEALS  💜 ° At hannahtopia.com we send gifts that are colorful, comfy, fun and functional to help brighten the lives of those living with medical challenges! ° As one Mom recently stated ... "I don't think that I've ever been so excited to open the mail! This is truly a fabulous idea for our special kiddos to have such cool gear 😘" ° Visit our website, enter your email in the pop-up and receive your welcome coupon! ° Our kiddos eyes light up when they receive a gift in the mail 😁😀😁! ° #hannahtopiallc  #hannahtopia  #apparelwithamission  #nillynoggin  #epilepsy  #eeg  #eeghat  #lennoxgastautsyndrome  #LGS  #dravetsyndrome  #dravetwarriors  #fun  #coverupthescary  #colorful  #fightepilepsy  #pillowcases  #specialneeds  #specialneedsmom  #comfyblankets  #seizures  #gtubes  #specialneedsdads  #blingyourbelly  #minkydroolcloth  #drool  #specialneedsawareness  #smile 

My sweet girl 💜 I haven't uploaded my training too much lately, sorry! Out of no where, no signs, no warning Winnie had a partial seizure on Monday afternoon that turned into the most terrifying aggressive tonic clonic seizure lasting over an hour. Three lots of emergency medications were administered but nothing was slowing down this status. To stop the seizure Winnie ended being ventilated and transferred to ICU for a short stay.

Unfortunately unknown to us, this seizure was the sign of something brewing. Winnie's teeth are causing us lots of problems leaving us with high temperatures, a cold and now Winnie has croup. The sooner we are randomised for this new research study the better.

This little girl is stronger and more resilient than anyone I know. You little girl are an inspiration. I am so looking forward to getting this hideous week out the way and getting back focused on my training for the 10k. I would like to say a huge thank you to all of those who have kindly donated so far, it means so much to Jack and I. Every little penny helps contribute to further research and a greater awareness of @dravetsyndromefoundation. The link is in my Bio if you would like to kindly make a donation.

#dravet #dravetsucks #dravetwarrior #epilepsy #epilepsyawareness #resilience #hope #dravetsyndrome #dravetsyndromeawareness

My sweet girl 💜 I haven't uploaded my training too much lately, sorry! Out of no where, no signs, no warning Winnie had a partial seizure on Monday afternoon that turned into the most terrifying aggressive tonic clonic seizure lasting over an hour. Three lots of emergency medications were administered but nothing was slowing down this status. To stop the seizure Winnie ended being ventilated and transferred to ICU for a short stay. Unfortunately unknown to us, this seizure was the sign of something brewing. Winnie's teeth are causing us lots of problems leaving us with high temperatures, a cold and now Winnie has croup. The sooner we are randomised for this new research study the better. This little girl is stronger and more resilient than anyone I know. You little girl are an inspiration. I am so looking forward to getting this hideous week out the way and getting back focused on my training for the 10k. I would like to say a huge thank you to all of those who have kindly donated so far, it means so much to Jack and I. Every little penny helps contribute to further research and a greater awareness of @dravetsyndromefoundation. The link is in my Bio if you would like to kindly make a donation. #dravet  #dravetsucks  #dravetwarrior  #epilepsy  #epilepsyawareness  #resilience  #hope  #dravetsyndrome  #dravetsyndromeawareness