- Видео 113
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Rowan is TumorStrong
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Добавлен 25 окт 2018
Rowan has been diagnosed with a extremely large and rare hypothalamic hamartoma brain tumor, status epilepticus, epilepsy with 5 different types of seizures (gelastic, absent, focal, occipital in the form of seeing colors, and temporal lobe in the form of feeling like he is floating in his body). The last two are the ones that are terrifying to Rowan when they occur. He also experiences early puberty which is currently managed but he began puberty at the age if 1, and his bones continued to age several year beyond his actual age.
NASA Kennedy Space Center Sensory Experience #tumorstrong
NASA Kennedy Space Center Sensory Experience #tumorstrong
Просмотров: 40
Видео
Milestone!
Просмотров 59Год назад
It takes so much strength, coordination, balance, and determination to be able to climb and play. Those, like Rowan, with a disability or motor delay, work so much harder to be able to do that of which his peers can do freely. This is years in the making and 2 brain surgeries later, and for the first time, he navigated through a tunnel on a playground independently. Beautiful moment!
1 month Prior to brain tumor diagnosis.
Просмотров 340Год назад
1 month Prior to brain tumor diagnosis.
Letting the child set up the game
Просмотров 52Год назад
He got so much more practice visually, spatially, cognitively, and with motor skills by allowing him to set up the board game for the evening.
Motor skills practice. Gluing paper. Prek activity. Pre-writing skills.
Просмотров 21Год назад
After ripping pieces of paper up, have your child practice more motor coordination by controlling a glue stick in specific areas and placing paper on the glued areas. All of this practice helps with pre-writing skills.
Motor skills practice. Ripping paper. Occupation therapy
Просмотров 29Год назад
Working the hands and coordinating them in certain ways helps younger children with pre-writing skills.
Library Story Time. Song and dance.
Просмотров 28Год назад
Library story time to help with socialization, following along with words and movement and a routine, exposure to songs, and sensory input.
Infant seizure. Gelastic seizure. Cluster seizures. Partial awareness seizure.
Просмотров 3,6 тыс.Год назад
7 1/2 month old infant with seizures due to a rare brain tumor, a hypothalamic hamartoma. Gelastic seizures can be seen with the mouth pulling and forced smile. He check in and out of awareness as the seizures continue. Watch his eyes, head jerks, eyes looking up and to the right, awareness, upper body jerks, mouth pulling and forced smiling, and the inability of him having it stop.
Eye flutter seizure. Focal seizure in child. #seizures
Просмотров 1,6 тыс.Год назад
Eye flutter seizure. Focal seizure in child. #seizures
Gelastic seizure. Laughing seizure. Gelastic seizures can present at different intensities.
Просмотров 378Год назад
Gelastic seizure. Laughing seizure. Gelastic seizures can present at different intensities.
Motor delay. Motor skills play for child.
Просмотров 102Год назад
Motor delay. Motor skills play for child.
Fine Motor skills play. PreK activity. Color and shape recognition.
Просмотров 14Год назад
Fine Motor skills play. PreK activity. Color and shape recognition.
Fine Motor Skills and Regulating a hard time
Просмотров 20Год назад
Fine Motor Skills and Regulating a hard time
3 seizures and switching between them. Crying, laughing, focal seizures. Dacrystic & Gelastic
Просмотров 3,4 тыс.Год назад
3 seizures and switching between them. Crying, laughing, focal seizures. Dacrystic & Gelastic
Sorry to hear that. My child, almost 7, has also been experiencing gelastic seizures and absence seizures every day. His EEG result didn't even show seizures. We're currently trying to get an MRI scan. Let's stay strong together.
Sia is an evil person who slept with maddie ziegler. Don't listen to her
He is so cute❤
Poor Rowan ❤ i will write a book for him I promise. I'm a children's author. My name is Sapphire
We had rhr same chewy. My cholf has hemiplegic CP and potentially seizures. Hoe did you find out hr had a tumor? Weve had mris od just brain.
Did his EEG show sharp waves?
How did you understand that was a seisure ?? it looks like normal movements.
Your not alone I have seizures every month. I feel so bad for you and your family. You are all in my prayers
That is the cutest laughing
Damn, your son can't control his laughter if he experiences gelastic seizures like that. I don't actually have that but even if I do laugh, I have a control over it. Also, I want to recommend to get your son operated for this seizure. But did you take your son to undergo surgery to cure that seizure?
Thank you for this. My son laughs uncontrollably like this. Hes non verbal with severe autism. Just tonight he had a temperature and woke frequently laughing. The temp made me think hypothalamic and we've been dismissed previously. I'm very worried.
My son’s baseline temperature can be off and run high because of his hypothalamic hamartoma and was worse when he was younger. Please see a neurologist and request an MRI if you are concerned about a possible HH. The hope for HH website has a specific MRI protocol for identifying this type of tumor since it can be small and missed by a traditional imaging.
I really know nothing about babies, I would have just assumed the little guy was hyperactive or something... I would have never guessed its a seizure. Thanks for posting, it will help educate many
I know it's hard on you as well as him. God give you strength and give him healing.
As an adult living with GS, I can tell you that while it takes work, living with it can get better. Glad you were able to find out what it was while he's young. It is often not figured out at a young age.
Thank you for your comment. I often worry about his life into adulthood, and also the long term outlook following his 2 neurosurgeries. His cognitive process and recall has been a struggle for him the last few weeks, completely separate from his intelligence, and he does not struggle in that area.
How do you tell the difference between this and just excitement?
He cannot control when they occur or stop them. It follows a seizure pattern of getting to a peak and then coming down. He loses muscle control, it becomes weaker and he will drop to the floor or need to lean on someone or something to prevent him from falling. He also has a rare and specific brain tumor that is known for laughing seizures and the older he has gotten, the more he can communicate about his experience and the lack of control he has with laughing and not liking it and wishing it would stop because he loses control during them. He also will try to avoid certain motor activities or the amount of focus on a task when he feels like one will start because of the amount of neurological or physical demand.
@@Tumorstrong thank you! I work with people with seizure disorders, but when you aren’t with them as much as a parent is certain seizures can be easier to miss.
@@Hambonehoven thank you for acknowledging this. There are a lot of seizures that people are unaware can actually be seizures, like crying seizures, laughing seizures, and eye flutter seizures.
Is it dangerous ?
P R O M O S M
Every KID IN THE WORLD AT THIS AGE THATS JUST STARTING TO SUT UP FALLS DOWN?? WTF. Everything these kids do is from their head? I doubt they have 1 thing wrong with them
Baby laughs it’s a seizure… Baby dances it’s a seizure… Baby blinks it’s a seizure… Baby watches TV it’s a seizure… Common kid Momma needs that Go Fund me full! Can’t just live off the Cash App and Venmo donations. Dang it! Now lay down and flop like a fish give them a good show!
Look up his diagnosis. Hypothalamic hamartoma. And he has has had 2 brain surgeries in the last year due to his brain tumor that causes intractable epilepsy. And I do not have a go fund me, or a cash app or Venmo. The families that actually experience this condition are often left feeling alone and unrelated to because of its rarity. I’m sorry you think this is for clout, but it is very real and had upturned our entire family, and while it looks “normal” to others, it has serious cognitive effectives due to the deeply rooted seizures. Apparently you are not the targeted audience for this information, and that is ok. There are 3 known neurosurgeons that treat my son’s brain tumor that causes these seizures, if that helps to speak to the volume of its rarity and how beneficial it is to a family trying to discover and relate during their own HH journey.
SO CUTE 😍
If you recite the under mentioned prayer 400 or 2000 times, all of your child's illnesses will vanish by the mercy of Allah (all glory and praise be to Him). "O Allah, send prayers, peace and blessings upon our Master Muhammad, the medicine of hearts and their treatment, the soundness of bodies and their cure, the light of vision and its illumination, the spirit of all spirits and the secret of their endurance."
Can you please share in arabic?
اللَّهُمَّ صَلِّ وَسَلِّمْ وَبَارِكْ عَلَىٰ سَيِّدِنَا مُحَمَّدٍ طِبِّ الْقُلُوبِ وَدَوَائِهَا ❁ وَعَافِيَةِ الْأَبدَانِ وَشِفَائِهَا ❁ وَنُورِ الْأَبصَارِ وَضِيَائِهَا ❁ وَرُوحِ الْاَرْوَاحِ وِسِرِّ بَقَائِهَا
Can yu give me yr email address. When I insert the arabic text into the comment box the vowel sounds are not mentioned.
BNS Seizure
OH he is so sus when he said butter me up😳
Hope you all live in love. Xx
How is your baby now
He has his 2nd brain surgery scheduled for 11/4
Whats the cause if these seizures may God bless him with 100% recovery My son’s 11 now and he’s getting this kind of seizures as soon as he sleeps
@@RabiaHussain2392 The cause of his seizures is a giant brain tumor called a hypothalamic hamartoma
Prayers
Yeah the eyes tell He's definitely struggling
@catherinebranson3257 Why do you think so?
Aw bless this lovely little guy♥️💓
Gorgeous baby, what a love!❤️
Any updates please
An update on Rowan, our neurosurgeon sent out his case across the nation several different times in the last 6 months and she was able to locate a specialized neurosurgeon out of state in Houston, TX that specifically works with his type of tumor. It appears that only a handful of them exist across the nation due to the rarity of his tumor. This neurosurgeon pioneered a new surgery because the traditional neurosurgery prosecuted do not work to remove his type of tumor due to the size and location and how it pushes up and is entwined with all his major blood vessels and autonomic functioning in his brain. But about 10 years ago this specialist neurosurgery pioneers a surgery called stereotactic laser ablation. We are flying to Texas in March to have the first surgery completed and there is a large probability that due to the size, it will just reduce his tumor and not remove it. And the only certainty that we have been told is that for at least 3 months post op, there will be an increase in seizures as well as a possibility of new types before the brain regulates. So this will be the next step in our journey.
I am so sorry you had to go through this with your babies.My prayers are with your family.
Do you mind sharing what type of testing they did to diagnose it was a myoclonic seizure? Currently waiting to get an EEG done but I suspect this is the type my daughter is experiencing.
They did multiple EEGs and they also were able to evaluate multiple videos that I had taken as well when not admitted to the hospital. Did you ever get any answers about your daughter?
@@Tumorstrong We did get answers! They did 2 EEGs and an MRI along with other labs. They found that they were non-epileptic myoclonic spasms, so not seizures!
@@justinec6781 That is such awesome news!!!! That must be so relieving. I am so happy for your news and for your family.
@@justinec6781 how old your baby.... Still she dose this
@@pallavipraveen6836 She outgrew them after about 3 months. They slowly started to become less frequent. She still does them once in a while now, she just turned 2. But not often anymore or as intense. She did however end up just having 3 more real seizures so she possibly has epilepsy. :(
What movements do you say here is seizure? My baby does this
It is the eye movements and the upper body jerking
How is your baby now he still dose this
Ugh I want one SO BAD! I’m in my early 30s and have no children yet so.. every time I see a baby my biological clock’s ALARM goes off! I mean for real there’s gotta be some instinctive mental thing going on in women that reach the age they should start having children.. and the older you get the stronger it gets
Poor little guy. My cousin died at 3 months of a seizure, he had lots of other health issues though too, caused by his umbilical cord prolapsing during his birth which caused him to be without enough oxygen for too long. Two weeks after his funeral I had my first child, I was 20 lol I thought I'd mention that because I have cousins not much older than my own kids, was born 3 months premature and spent 52 days in NICU and had to be brought back twice and almost died of an infection that damaged their heart. I almost died during the delivery as well but 17 years later my first is about to graduate early from high school and doing pretty well considering.i miss little baby D though. He brought joy to our lives for 3 months. He amazed even the doctors who said he would not live through the night. I actually had the same maternity room that his mom had prior to his birth and my daughter stayed in the same NICU ward he was in when he passed away. We will miss him and I wonder what he would be like now. Hope all the best for this little guy and that you can get and keep his seizures under control.
Precious little angel boy! Praying for leaps and bounds for him. He’s so strong! 💙🙏🏻
I'm confused by this. My oldest daughter did this at only a week old and rolled over both ways at 4 days old. She had severe colic and when laid on her back she could sit straight up by a month. Her only issues after the colic wore off at 10 months is that she is very ADHD and has some vision issues. No one ever said there was brain issues. She is now almost 24.
I can’t say that there are brain issues but my personal belief is that with the kiddos that definitely have more sensor processing needs, there is something that happens in their brain to make them extra sensitive. It doesn’t mean there is a brain tumor as in our case, but when my son has laughing seizures his sensory stimulation and need definitely goes up
He's breathing so hard, like he's struggling just a tad bit. Baby very alert, he's going to be very smart.
I'm sorry, but I do not understand this video. Are you demonstrating the swing? In another video it shows something similar, but the baby is in the swing. I am not being insensitive, I was just wondering.
He is such a beautiful child! I'm sorry he has to endure seizures like that. I pray his health improves.
If caption is true re seizures, his parents vaccinated him. No parent would vaccinate if they learned about the ingredients, & the permanent harm the ingredients can & will inflict upon their infant, and the truth about how vaccines have destroyed the health of our most vulnerable babies. Cancer, seizures, allergies, developmental impairment, etc., were rare before vaccinations. People that point out the obvious, are attacked, labeled, & even hated, for their efforts to protect these young souls. Parents do this because they believe the doctors who also do not know much about vaccines. Parents are the last line of defense, yet very few parents know they need to go beyond asking those people that profit from vaccination, & get all the details & information. Vaccines can not be undone. The damage they cause is permanent.
This silent baby is so lovely❤️❤️❤️
Hold the back of that babies head people...wow some reproduction systems for real
He was born with an extremely large and rare brain tumor that resulted in extreme hypertonia and he did not develop as a “typical” child and as soon as he was born he was holding his own head up. We are aware that it is abnormal for a child at this age and this is to bring awareness because it is not typical for this reaction in a child this young and it was our first warning sign that a brain tumor did exist and we did not have the knowledge at birth and doctors did not look into it further, only kept saying that he is “so strong”. Then at 4 months old his seizures got so bad and would not stop for hours with multiple medications administered in the ER, and he lost all motor, cognitive, and speech abilities which led to further medical testing and the discovery of his brain tumor. His behavior and not supporting his head were his specific medical needs and not representative of the majority of the population with infants.
❤️💗❤️💗💗❤️
Lookin jus like daddy
May God help them find the appropriate therapies/treatment for the baby’s condition ❗️You can tell there’s plenty of bonding love between Daddy and baby❤️🙏
He's absolutely beautiful ❣
“Your searching for the wrong thing I don’t have those” 😂😂😂😂🙌👌
Lucky baby to have such loving parents in his life!
Hello sweetheart . Love you so very much. PRAYERS for you Know what you are and will be going through as you keep growing. I too have had all the different types of seizures as I was growing up. Maybe someday there will be a total cure but for now you will always be in my PRAYERS. GOD BLESS little angel
It's up to us it's up to the people to make these changes and we've got to get them to stop doing the refineries and we've got to change our transportation system because the fumes and the carbon dioxide in the crap spewing out of the refineries is causing cancer and alarming rates