#mombassadorchat
Moms,
Our chat today is with @smilingwithmyawesome4kids on the topic of Epilepsy.
Here's her bio:
Hello 👋 I am Ceiamaria, I am happily married to my amazing, awesome, caring, supportive, & loving husband of 12 almost 13 wonderful years . We have four beautiful children: Kristen is 12 she is our only princess. 👸🏼 Ty Ty is 9 years old, he is in the picture above. He was diagnosed with epilepsy at 2 1/2 years old. He has 35 different kinds of seizures and sees a neurologist every month. His seizures are unpredictable and he is on 10 different kinds of medications. His medications sometimes control his seizures and sometimes they do absolutely nothing. Ty Ty has blood on the back of his brain. He is a part of the Epilepsy Foundation. We pray that one day there is a cure for Epilepsy. Dan Dan is our second son he is 8 years old. Baby Mac is our third son. Ty Ty's seizures are very severe.
Here are some tips to learn more about Seizures and Epilepsy:
1.) Epilepsy starts out with clonic seizures
2.) Frebile is a fever 🤒 seizure but the neurologists don’t count these as seizures.
3.) If you believe your child had a seizure please take them to the Emergency 🚨 room to get checked out
4.) Only a neurologist can determine if your child had a seizure or not
5.) if a neurologist determined your child needs medications, please give the medicine
4.) Keep a seizure journal. take your seizure journal to your child’s neurologist and they will review the journal
5.) Brain ct scans sometimes can determine if you will have Epilepsy.
6.) Get a life alert bracelet to let others know you have seizures or that you have epilepsy
7.) Remember your child can not do certain things example my son can’t climb high up because he has epilepsy
8.) Discuss everything with your child’s neurologist
9.) Once your child reaches driving age they have to be cleared by their neurologist to be able to obtain their drivers license, some states require you be seizure free for so long before they will allow you to obtain your drivers license
10.) Don’t lie on the applications when they ask if you have seizures because you can get in a lot of trouble
11.) Remember seizures or Epilepsy don't define you. It’s just a obstacle. You can still play sports, but let your Coach know
12.) Seizures or epilepsy is not contagious at all. I remember when Ty Ty told his teacher he had epilepsy and all the children thought it was a disease
13.) As soon as your child’s neurologist diagnoses your child with seizures or epilepsy file for SSI, a lot of medications are not covered on most insurance
14.) Don’t treat your child differently, just embrace their seizures or epilepsy. Often Ty Ty's eyes would hurt 😞 due to the lights so we would play or tell a story in the dark . We never let Ty Ty feel left out.
We are praying for the day that a cure is found for seizures and for epilepsy
Tag @smilingwithmyawesome4kids in the comments to ask her a question!
A huge thanks to her for hosting the chat 💗
Let's get chatting!
🍂mom.life_usa🍁
Лучший комментарий
Комментарии
I have epilepsy too. My medicine Lamictal controls it so I live a normal life. I can't imagine how bad it scares you when your son has a seizure. You are one brave mommy! Someday hopefully we will have a cure.
@smilingwithmyawesome4kids thank you, darlin! You and your handsome lil man are in my prayers as Well!
@babyofmine, I absolutely apologize I just seen this my advice would ask your neurologist if they approve you to drive sometimes they approve strict day time driving no night time driving but check with your neurologist first then call up your local Bmv office ask what their guidelines are if you have any question please message me ❤️
@smilingwithmyawesome4kids, hey momma I have epilepsy too and I know about the waiting for the okay to drive and stuff I've had epilepsy since I was 2 as well but I always have more of the petite mail seizures more than the tonic colonic ones and I'm not sure but I wanted to ask you if you know that even if it's not a gran mail seizure if I can still drive I get the petite map seizures every day and idk how to drive but I want to and I'm not sure if they'll let me because of the petite map seizures and just wanted to know if you know anything about that
My mom has epilepsy. She has the bad grandmal seizures. Its very scary to watch...
Thank you for sharing your story and tips. My daughter got diagnosed with epilepsy last month when she was only 13 months old. She is now 14 months old and we found out her seizures are focal seizures. They are coming from the frontal part of her brain and her neurologist said those kind of seizures are usually very hard to control and aggressive. If medicine can’t control it they will consider surgery in the future and it breaks my heart that my baby girl has to go through this.
@smilingwithmyawesome4kids it's called children's?
@aaquino, that’s why I recommend Children’s because they are awesome my son flatline twice during 3 back to back seizures . Children that young is top priority and it sounds like that hospital is not doing all they can just check Children’s out I absolutely live by him they saved my son’s life
I live in Rochester so I take him to Strong hospital they have an amazing reputation but are falling short for us in this situation! @smilingwithmyawesome4kids
@aaquino, I just googled Children’s hospital in New York I think you should get in contact with the one close to you unless it’s in the Bronx a lot of mommies on here speak bad about that area I can’t speak on because I have only been to Long Island if you need any help please message me ❤️
@aaquino, do you have a Children’s in your state if so take him there they are excellent that’s where my son goes
@smilingwithmyawesome4kids he is only 5 months old so we just kinda of thought they would treat this with a little more urgency we are in the process of looking for a new neurogist I document everything I call I email I mean I've literally spoken to almost every neurologist in this office when he was first diagnosed at 2 months they did an ultrasound of his head an EEG an MRI and 4 lumbar punctures but they haven't done anything since even though the seizures have continued we just aren't really sure what to do next
@danielswifey, @stevie.savoie22, yes it is praying 🙏🏼 for your beautiful princess 👸🏼
@aaquino, keep a journal with the date time how long the seizure last was he doing before the seizure describe if he shook foamed at the mouth got sick couldn’t see urinated all over his self bit his tongue and share this with your child’s neurologist
@smilingwithmyawesome4kids thank you for sharing your story my son was just diagnosed with myoclonic seizures at 2 months old we are currently in a battle with his neurologist to try and have more testing done because he is on keppra and phenobarbatol twice a day and still has many seizures and they seem to be getting worse as in they are last linger and he us having more and more and instead of running test all they keep doing is increasing his dose every 2 weeks
@smilingwithmyawesome4kids also epilepsy isn't my only health issue as to why i am trying to get my disability. I was in a car accident in 2014 and severely messed my back up and ive already had one surgery and need another one.
@smilingwithmyawesome4kids it's different when you're an adult though and are trying to get disability for yourself. There are lawyers out there who will work for free and only get paid if they win your case for you. I have a very well known lawyer fighting my case for me and they have been doing a good job so far.
@tiffanykohler29, has he provided documents tell him to appeal their decision
@smilingwithmyawesome4kids idk if there ever will be because there are so many different reasons as to why people have epilepsy and have seizures
@tiffanykohler29 he needs to get him a lawyer. I've got turned down several times for ssd because of my age but i finally got a lawyer and i'm waiting on a hearing. It still takes time though.
My husband is 33 years old and 2 years ago he was diagnosed with epilepsy. And he was seriously injured at work. Where he lost his left ring finger due to a lawn mower. And now he has total loss of his left hand for good. He keeps getting denied by ssi and ssd. They say he doesn't have a disability that he can work. But all jobs are turning there backs and saying that he is a liability to them
@smilingwithmyawesome4kids it scary because people do stop breathing when they have seizures. I had that one in March that lasted 7 minutes and i almost died but the i was already at the hospital and when i got done seizing they took me straight down the the ER and got me breathing again and woke me up and gave me something to calm me down
@danielswifey, yes it truly is we got accepted in The Epilepsy Foundation I can’t wait until there’s a cure Let’s End Epilepsy
@smilingwithmyawesome4kids that's horrible, i'm glad they finally diagnosed him. I've had an MRI, ctscan and eeg and now been diagnosed with it and take 1500mg of keppra a day. My last seizure was a little over a month ago and i bit my tongue which is horrible!
@danielswifey, my son flatline twice during three of his seizures back to back scared to living hell of me I was 5 months pregnant with Dan Dan at the time
@danielswifey, I can’t speak on what another neurologist ask but with my son’s experience he started off have Frebile seizures which all his pediatrician told was told me keep a journal and write Time date how long he was in and he if the sqad has to come . One week after my son seeing his pediatrician and me doing his journal he had a seizure I tried to stick a popsicle stick in his mouth so he didn’t bite his tongue. But I was too late my son til this day has a small piece of his tongue missing . I went back and forth to the Emergency room and his pediatrician trying to get requests test. It took my son to have 25-30 seizures a day for them to realize he needs to have test done first test was a mri of his brain second test was ct scan of his brain third was brain study wave test fourth was a sleep test . After all these tested were done he was diagnosed with epilepsy
@smilingwithmyawesome4kids before i started seeing this dr because she is close to home i seen a dr who is an hr away and he is the first neurologist to diagnose me with epilepsy.
@smilingwithmyawesome4kids she has in my records that i have epilepsy, gave me papers on epilepsy and don't want me driving. She looked at me and said you have epilepsy. I see her every few months for her to check and see how i'm doing and last time she had to increase my meds.
@danielswifey, any kind of seizure exact Frebile the neurologist prescribed medicine
@smilingwithmyawesome4kids my neurologist has diagnosed me with epilepsy.
@danielswifey, grandmal seizures don’t exactly classified you as having epilepsy. Individuals sometimes get confused when they associate seizures because they automatically assume they have epilepsy which is not the case .
Also i don't have back to back seizures. I can go years without a seizure but when i do they are dangerous grand mal seizures. My last one lasted 7 minutes and i almost died therefore the Dr diagnosed me with epilepsy and put me in meds
@danielswifey, my son is 9 years old and he takes 10 different seizure medications I completely understand
@mommytojj, that signs like epilepsy but then it could be his medication is not strong enough I would discuss this your neurologist.
@mommytojj i'm on 1500mg of keppra a day.
@mommytojj, I can’t speak on what his neurologist said I can only speak on my experience with my son . Ty Ty has blood on the back of his brain and he has brain damage so therefore he will always have Epilepsy.
@mommytojj, if you son only had a few seizures then he’s not classified as having epilepsy . Epilepsy is Chronic seizures by to back only a neurologist can diagnosed epilepsy.
Thank you for sharing @smilingwithmyawesome4kids
God bless, I can tell u r a truly amazing mother. I have epilepsy an I am currently TTC an I must sat I am a bit scared.
I’m fortunate enough not to have anyone in my life who struggles from this personally, but I just wanted to say that you’re an awesome mom @smilingwithmyawesome4kids !❤️❤️❤️ Keep staying strong mama, you do great for your babies every day❤️❤️
I am excited 🤗🙌🏼🙌🏼 to inform Everyone and share my experience tips that work for my family
#momlifegroups
Moms,
Our new groups this week are:
Stay at home Mamas | @mama.of.my.prince
Being a Friend | @niki664
2017-18 Babies | @mermaid.mama
BBW & VS | @mermaid.mama
Intamacy | @momma_dee
Digestive Problems | @mermaid.mama November moms-Any Year |@mommytotheo
Tag the mom who's the Admin in the comments to be added to the group ✨
Also, if you want to start a group that's not on the list, please send us a message to have us add the group to our list for next week 😁 If you...
#mombassadorchat
Moms,
Done with diapering? Today we're chatting all things potty training with @smilingwithmyawesome4kids, who is a mombassador and admin of the very popular potty training group in the app. Share your potty training stories, ask questions and share tips on this post. @smilingwithmyawesome4kids will also answer any questions! Here's her bio and general tips:
Hello I am Ceiamaria I am a stay at home Mother to 4 children ages 12,8,7 and 11 months old. I am happily marr...
#momlifegroups
Moms,
Here are the latest groups to join! Please tag the mom in the comments below to be added:
Body Jewelry Moms (Piercings) | @mrsv.xo
Summer Babies | @proudmommieof3
@thatmomwithahothusband is asking for volunteers to Admin the Addiction and Incarceration Support group. Please message her if you are interested in taking over. ☺👍
Here's the whole list!
Group Name | Admin
Postpartum Depression | @Heera
Fitness/weight loss | @jgruenwald
Miscarriage and Loss | @...
My husband and I aren’t exactly strangers when it comes to relationship challenges 💞. We have been together for 14 years and married for eight, so we’ve definitely gone through some growing pains as we navigated a long-distance relationship in college and our first year living together as a married 👫 couple.
But nothing has challenged our relationship quite like our first year as 👪 parents .
Before you have your first child, you have these grand ideas of what it will be like. There’s more slee...
Preggies,
Today, we are deeply saddened by the news that @Martinajjones' baby, Jason Andrew Colley, was born early and passed away. He was born today, on his father's birthday, at 34 weeks, weighing 4 pounds 7 ounces and 17 inches long. @Martinajjones has been a strong member of this community since January. We are so sad for her loss, and her family's, and our thoughts go out to her.
You can message the family on this post, if you would like to add your condolences.
Best wishes,
Preggie_USA
@babyofmine, I absolutely apologize I just seen this my advice would ask your neurologist if they approve you to drive sometimes they approve strict day time driving no night time driving but check with your neurologist first then call up your local Bmv office ask what their guidelines are if you have any question please message me ❤️