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Atypical Day
Australia
เข้าร่วมเมื่อ 9 ธ.ค. 2021
Hi! I'm Hannah. I'm the mum of two wonderful daughters, one who has a rare genetic disorder.
I’ve always loved coming to TH-cam to find likeminded people, sharing their experiences and knowledge. When I was pregnant, I found so much wonderful information and so many other mums sharing their journeys. It was a relief to find videos about hard topics that felt so easy to learn from. And exciting to find communities that shared a similar stage of life to me.
As it became clearer that my motherhood journey was a little more... atypical, I naturally turned to TH-cam in search of other families who may have shared their own atypical family life. Learning some tips and tricks and a better understanding some of the more colourful aspects of disability would surely empower me. Instead, I found very little. It left me feeling more alone and disheartened.
So, I’ve started this channel in hopes it’ll encourage another not so typical life - or enrich a typical one!
I’ve always loved coming to TH-cam to find likeminded people, sharing their experiences and knowledge. When I was pregnant, I found so much wonderful information and so many other mums sharing their journeys. It was a relief to find videos about hard topics that felt so easy to learn from. And exciting to find communities that shared a similar stage of life to me.
As it became clearer that my motherhood journey was a little more... atypical, I naturally turned to TH-cam in search of other families who may have shared their own atypical family life. Learning some tips and tricks and a better understanding some of the more colourful aspects of disability would surely empower me. Instead, I found very little. It left me feeling more alone and disheartened.
So, I’ve started this channel in hopes it’ll encourage another not so typical life - or enrich a typical one!
What's In My Hospital Bag // Visits To Emergency
While I was pregnant I loved watching videos on what to pack for labour. Going to the emergency department at hospital is not fun (like going to meet your new baby is), but it has been a big part of our life raising a child with a rare genetic disorder. And since we recently had an emergency visit to the hospital, and I've made it a habit of always packing just in case of admission, it's an excuse to go through all the stuff I took.
I do want to mention, if you don't have time to pack anything it could be an indication that you should call an ambulance, rather than drive yourself and your child to the hospital. Assess each emergency situation individually, and make the judgment calls you believe are right for the situation. I would recommend to pack 'just in case' only if you're able or think there's a high possibility of admission. If you're child is having seizures, and that's the reason for your trip, don't leave them unattended!
Not every visit to emergency is the same. This trip, for example, was due to ongoing vomiting (among other things), and when you're going for things like that it's a good idea to pack multiple changes of clothing for your little one. If we had gone for seizures alone I would've packed differently.
I didn't get a chance to delve into much explanation or recommendations on what to take in this video. If you're interested in learning more about hospital emergency visits and admissions let me know in the comments. I plan to cover the subjects in future videos, and I'd love to be able to include all the things you want to know.
And as always, if you have any questions leave a comment below and I'll do my best to answer them.
Follow me on Instagram @atdfamily
atdfamily
I do want to mention, if you don't have time to pack anything it could be an indication that you should call an ambulance, rather than drive yourself and your child to the hospital. Assess each emergency situation individually, and make the judgment calls you believe are right for the situation. I would recommend to pack 'just in case' only if you're able or think there's a high possibility of admission. If you're child is having seizures, and that's the reason for your trip, don't leave them unattended!
Not every visit to emergency is the same. This trip, for example, was due to ongoing vomiting (among other things), and when you're going for things like that it's a good idea to pack multiple changes of clothing for your little one. If we had gone for seizures alone I would've packed differently.
I didn't get a chance to delve into much explanation or recommendations on what to take in this video. If you're interested in learning more about hospital emergency visits and admissions let me know in the comments. I plan to cover the subjects in future videos, and I'd love to be able to include all the things you want to know.
And as always, if you have any questions leave a comment below and I'll do my best to answer them.
Follow me on Instagram @atdfamily
atdfamily
มุมมอง: 458
วีดีโอ
A Typical Day // Side By Side Day In The Life
มุมมอง 2802 ปีที่แล้ว
This video is a bit different. It's a collection of clips from the course of a standard stay at home day, on one side is my atypical 2 year old, and on the other is my typically developing 9 month old. This is just one day, and not everyday is like this. It's a bit hard to explain to someone what goes into raising an atypical child, but it's a lot easier to show it. I hope it's an interesting l...
Signs Of Developmental Regression In Our Baby
มุมมอง 7362 ปีที่แล้ว
In our journey so far we have experienced two major developmental regressions. When we found out about our daughter's rare genetic disorder, one that causes DEE, we were told there would be ups and downs throughout her life. As much as that was made clear, we didn't really understand what that actually meant. At the time we found out, there was only relief that our daughter would have a long li...
What Is SCN2A?
มุมมอง 2.1K2 ปีที่แล้ว
Donate to help find a cure for SCN2A fundraising.epilepsyfoundation.org.au/scn2a-donation SCN2A day is on 24 February. My first baby, Mabel, has a truncating (sometimes called stop codon or nonsense) SCN2A mutation. To help raise awareness I’m sharing everything I’ve learned about this genetic disorder. It causes DEE and ASD, as well as other neurological and even non neurological disorders. Sh...
How Therapy Can Help Your Family // Pediatric Physio, Speech & Occupational Therapy
มุมมอง 1212 ปีที่แล้ว
Our daughter has a genetic neurological disorder, so she regularly sees a Pediatric Physiotherapist, Speech Therapist/ Pathologist, and an Occupational Therapist. At the beginning of our journey, I didn't know very much about these - and I didn't know anything about OT. Since then I've learned some of the things these specialists can help with, and what they do. In this video I cover the basics...
Signs Of Developmental Delay // Things I Noticed as a FTM
มุมมอง 3252 ปีที่แล้ว
It’s always interesting to hear stories of the little oddities (or even the big red flags) pointing to developmental delays - every baby and experience is so different! Share yours below. It can be hard as a first time mum to know what developmental delays look like. Especially when they’re subtle and hard to explain. With my first born, who has a rare genetic disorder, I didn’t notice anything...
What Are Infantile Spasms?
มุมมอง 65K2 ปีที่แล้ว
Infantile spasms are a detrimental type of epilepsy. They are usually accompanied by developmental delay, regression and hypsarrhythmia (a chaotic brain wave pattern visible on an EEG). So often they're missed because they can look just like a startle or colic, but it's crucial for a child that they're noticed and treated quickly to improve outcomes. 00:00 Intro 01:02 What Are Infantile Spasms?...
Unbelievable how she was told it was normal! Go with your gut mothers!
Praying for your daughter's full healing and recovery, God bless your family! Thank you very much for sharing this video.
God bless the baby
Just find out my son has the (novo) SCN2A mutation. He has sighns of autism and developmental delay and some reflux but no epilepsie. I felt sad and cried alot but Now I know it isn’t that bad.
My son have been doing this for about a year and a half and they usually lasts 3-4 minutes and like 4-6 times a day.. and I told his doctors soooo many times and they're telling me he's okay, and I know this is not normal
How is your child now
My daughter tenses her jaw and sometimes seems to have a cold shudder. The doctor noticed her head shape seemed unusual in March but then did checks and all appears to be fine. I've noticed the twitches since she was 6 months old (March). I definitely want to take her in but developmentally she is quite far ahead. She is also a twin and both appear to be thriving
God bless you and your family ❤
God bless you and your family ❤
Very useful! Thank you❤
Thank you for sharing this ❤
You are a super mom. God bless you.
Thanks for sharing the very useful information on IS and video. You are one brave parent. Wish your baby and family best.
Hii how’s baby now?
Hello, please I need you to share what was the treatment given and how she is now. My son was diagnosed at the age of 9 months with infantile spasms, now he is 12 months old but the sings are not going well with us.
Hello, I’m waiting for testing too, how is your baby doing?
Thankyou for this video my 9 week old baby has just been diagnosed with this and my partner has also just found out he has it too. Partner has carried it silently and is now 29. It’s crazy how it can differ so much from person to person ❤
My daughter has infantile spasm.
They’re usually repeated right? Like a few spasms in a row?
U r great and brave... thank you for sharing the video
Very interesting video.
Ma Allah mercy upon her Ameen And thanks for very informative words that's you share 👍 how is she now?
Very interesting thanks for the information and im suspecting my kid has sizure he cries while asleep he frightened and squirt his hands and legs I'm so worried they are twins
How your kid now?
My daughter Liberty is 14 years old with a de novo SCN2A mutation. She’s wonderful, and a blessing. Thanks for helping shine a light on our kiddos! Good job mum!
Do you call 911 every time he has a spasms??
Hope she is doing better today. 💛
Thank you for a very informative video. My granddaughter will be evaluated by a pediatric neurologist soon
Your daughter is beautiful. :) how is she doing today?
Thank you This information is very help
❤️❤️
i have had seizures.
Thank you 🙏🙏🙏❤️
Thank you so much for this ❤️
God bless you for making this video. Thank you.
At two months old we had this scare with our daughter. We took video of her doing it on multiple occasions and showed them to our pediatrician. Unlike your story we had a much different one. Our Dr took it very seriously and immediately referred us to have an EEG done. In the end, all was fine. I don’t think we will ever know why she was doing the strange movements she was doing. I am grateful though that we had the over cautious Dr who wanted to make sure versus being sent home to worry and wonder. We lived in Oregon in the US at the time. I hope all is well for you and your beautiful girls and family.
Same thing with our daughter, she is turning 2 months old when she started having that kind of seizures. We rush her to the hospital and conduct EEG. The result was negative but still the seizures occurred. Then we ask our pediatrician/neurologist for medication. The Dr. gave us Oxcarbazepine an antiepileptic drops. We are still here in the hospital. And hoping the medications and the care given by the nurses and doctors treat our daughter.
Same with my daughter (also live in Oregon). We went to OHSU Doernbecher Children's Hospital, and they performed CT scan, EEG and dilated her eyes to check her response to light a part of a neurological exam. They diagnosed her with Infant Shudder Syndrome that is benign nonepileptic events. She does have a follow up appointment in about 3 months with Neurology but the whole thing has been terrifying.
How is your daugther now? Hope shes doing well
@@MsPbasshow your child does that syndrom kindly guide me and how is your chikd now
My son is suffering from. Scn2a
How long they treat the INFANTILE spasms
Why doctors delay it, I mean when they see these videos they should recommend us to do EEG ,strange
Is this mutation de novo or hereditary in your baby?
Thank you very much for your film, it showed me that not everyone who has the SCN2A gene defect has the same symptoms. My 18 month old son also has this gene defect.
I'm so curious of this my daughter is 10 weeks old, bring diagnosed with epilepsy, I've only seen her having 2 tonic seizures, she does something so similar to these spasms with her legs and arms flying out and her getting quiet upset like she gets a fright or in discomfort, these happened while getting an eeg and nothing showed up at the time, I have medication to use when it's going on a long time but the days these happen it can happen every 5 minutes for at least an hour up to 7 hours, I have about 100 videos on my phone and they are all the same she use to do the eye rolling badly and I was told it was wind, shes had a stroke after open heart surgery and has being having seizures due to the stroke as it has left damage and fluid on the brain where it happened, im at my wits end with worry when they're happening
This sounds really scary. I just want to let you know first that you’re an amazing mum, even if you don’t realise it right now. To me it sounds like infantile spasms. They can occur without the EEG abnormalities - when our daughter’s IS relapsed she didn’t have hypsarrhythmia. Especially because of an epilepsy diagnoses and the stroke history, I would definitely push the topic; even if it isn’t infantile spasms, having these events over and over, over so many hours, isn’t good. It lowers quality of life (saying this usually helps doctors get moving). I really hope you get an answer and find something to help!
Pls consider seeing a good homeopath.
Thank you for sharing your experience and all the information you have on IS. Currently advocating for our 2.5 year old son who may have this but doctors are saying he's too old for infantile spasms. We just noticed he started doing these movements a couple months ago. We first made an appointment with pediatrician, he was seen 3 weeks ago and got an appointment for an EEG (scheduled for August 6) but after seeing videos 2 days ago about IS, we decided to go to a children's hospital ER. We were admitted and now waiting for EEG test this morning. Hoping to get help, answers, and medication for our son.
I hope everything went well with your son’s EEG. From what I’ve learned about IS, majority of cases are under 4. 2.5 doesn’t seem too old at all! Its so good you’ve done the research and are advocating. It sounds like you’re doing a wonderful job taking care of your son, he’s in the best hands ❤️
Hi,I know this was a while ago but, how's your baby doing now?
@@omoladeolude2679 Hi! My son is doing great! He was diagnosed with epilepsy, specifically lennox gastaut syndrome. But God is good, he healed my son! He hasnt had a seizure since November 20th, 2022. He has confirmed it many times that he is healed. However he does have some delays such as speech and others but he is getting therapy and it is helping. He is progressing and talking a lot more. He is so smart! He was evaluated by the school district and he was able to go to pre school for children with special needs and hes doing great there. I never want to go through this experience again because it was scary and we felt helpless and hopeless but this only drew us to search for God and thank God we did because now our lives are changed forever. My husband who wasnt a brliever in God and Jesus Christ is now a christian, never attended church before but now loves going. We are now a praying family who serves the Lord. I see his hand moving in every aspect of our lives and he is now changing my familys lives too bringing them closure to him. I owe it all to him. Thank you for asking about my son. I am so thankful I got to share this with you. Blessings 🥰
Hey :) how’s your baby now?
I agree... How is your baby now that it's been a year?@@atypicalday8
Thank you so much
How do you get a video of the attack is so quick? My baby is having head drops, but it’s literally only one second so I don’t know how I will ever catch one on camera and I’m so nervous that we won’t get a correct diagnosis because I don’t give the neurologist enough info
Hi Shanna!! I hoped you baby is ok , I understand for your comment because I was on that moment of caching up my baby doing head and body shake for a second , we keep monitoring him all the time , long short story, you may speak with your pediatrician, to see a neurologist, they’ll do a EEG test , we as a parents have to take anything serious with ours baby because they can’t speak and the good things there are professional to help us . I’m hoping you get the help you needs.
At the start we got the videos by just recording a lot. I sat down and recorded during times my daughter would normally have the events - like when she was tired in the afternoon. It would be sometimes 30 minutes of recording before we’d catch one. Then we’d stop and start a new recording (to easily find the spasm). Spasms happen in clusters, usually more than 1, so if you think you’ve missed one just sit and record for a while. When we go back through old videos of her from that time we’ve noticed a spasm here and there too (ones that we missed at the time), so you might be able to find an event that way as well. But, like 74ansel mentioned, you don't need a video to get a diagnosis! It helps, especially if you're getting any resistance from doctors. But there are many children who are diagnosed just by going to the hospital and talking to a doctor. Your concerns are valid without "proof" and should be taken seriously.
Great video! I think it's really good you keep up some form of self care routine for mental health 😊 When you are eventually admitted do you get your own room or is it shared with others? And with all your experience now, do you have a good idea of when Mabel's symptoms will be quick through the emergency process and when you'll be left waiting a long time?
These are all great questions! We go through the hospital system publicly, so our experiences with in-stays might be a bit different than someone who is admitted privately. It's up to chance whether we get our own room or a shared one - which can be anywhere from 2 to 4 beds. You'll get your own room if you're admitted for a contagion, like rhinovirus, etc. With the emergency process, we generally have a good idea of what will happen and about how long it'll take. If you're going in for signs of infection - fever, fatigue, chills - or general pain, like stomach aches, there'll likely be blood and urine tests done. This process will usually take a few hours with lots of waiting, and that's the quickest turnover. If we're being admitted, we can be in the ER for 6 hours or more waiting for a room.
Thankyou so much for making this video, it was really informative especially to help in understanding scn2a. You have done such a amazing job raising 2 beautiful babies and learning and advocating for Mabel.
Thank you! I’m really glad it’s helpful. Mabel teaches me everyday.
Thanks for video! Makes it so much easier to explain to others on what scn2a is
I’m glad I could help!
You are such a great mama...much love to mabel
Thank you! We feel the love!
Mabel is such a gorgeous and adorable baby, we can tell you look after her so well. Your video is very clear, logic and informative also. Impressive 👍👍👍
Thank you! Mabel’s my special little sunflower, she’s been a little ray of sunshine through everything. She’s taught me so much.
Really enjoying these videos!!
Thanks!
Explained so well! Really enjoyed watching.
I'm glad you like it!
Loved how you explained everything!! Really helped me to better understand scn2a!
I'm so happy to hear that! Thank you.