IS SHE HAVING INFANTILE SPASMS? - Hypsarrythmia, EEG Results & Treatment Plan
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- เผยแพร่เมื่อ 9 ก.พ. 2024
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My heart breaks watching this. Please just know you're not alone. Your little family is the most important thing, so it's 100% the right decision, but dont be gone too long as I need you! 😂😂
Averys smile and giggling towards the end of that OMG!!! THE CUTEST!!! ❤❤
Thank you so much ❤️ I hope to be back to filming soon xx
Besides Avery’s cough she seems really wide eyed alert and smiley. ❤ Take the time you need we will be waiting for you when you are ready to come back 😊
She’s doing ok in herself. Thank you so much ❤️
Don't ever be sorry for taking a break. There are more important things than filming. I am so amazed at your resiliance as a mother and wife. We will all be here when you can come back.
Don't ever be sorry for taking a break from filming Avery and boys more important ❤
Thank you both so much ❤️
@@mummyandavery
How Avery doing
I understand why you are taking a break whenever you decide to come back, I will still be subscribed to your channel. I really love watching your videos as a fellow disabled young woman
Thank you so much ❤️ i appreciate it xx
Same here.
So I’m a 63 year old mom/grandma from Canada. I clicked on one of your videos just randomly and ended up watching many more and subscribing. I think you are an amazing mother. You have a beautiful family and you take amazing care of them. Don’t ever feel bad for taking time for yourself. Your mental and physical health is just as important. Sometimes as moms we forget that. I pray that your precious little doll gets over yet another hurdle. I will continue to follow you when and if you feel you are able. Hugs from Canada ❤
Thank you so much ❤️❤️
Oh Crissie, I thoroughly understand you taking a break. I will miss you and seeing your family and hearing the on Abery. I will be keeping you in my prayers. You do carry a heavy burden and my heart goes out to you and Josh. God be with you and bless you.
Thank you so much ❤️❤️
Take your time Avery needs are way more important. Prayers will continue for you all. Will be thinking of you a lot. You are an amazing Mom.
Thank you so much ❤️
Dear Crissie, take all the time you need! You and Josh are exceptional parents and have always managed to sort things out and do whats best for Avery. Hope sweet little Avery feels better soon! Lots of hugs and love for your family ❤
Thank you so much ❤️❤️
Awwwww nooooo... I'll miss you all so much, but I understand completely. Look after yourself and your beautiful children and we'll be here when you return. Wish I could wave a magic wand and make things better... But I have a strong feeling Avery will be alright in the long term. Much love from (currently very warm) Tasmania 🙋🙏❤️
Thank you so much ❤️ it would be great if you could send some of that warmth this way! Xx
Prayers for everyone. Praying Avery gets better with her congestion, epileptic troubles and praying they can figure out and treat the new troubles. 🙏💙
Thank you so much ❤️
Beautiful Mummy and Avery I'm going to miss you so much.
But your so so right Avery the boy's and Josh must come first.
Dearly hoping things improve soon.
😘😘🤗🤗🙏🙏
Lynne
Xx
Thank you so much ❤️
Prayers for you and your family. I totally understand and support you on taking Avery out of preschool while she’s going through all the health issues. As a former childcare provider so many illness go through daycare.
Especially this winter it’s been really bad xx
Crissie, I totally understand. Your mental health and your family are the priority right now. I will miss you and precious Avery. Sending my love and hugs. I will be praying! (Avery always brightens my day.) ❤🫂😘
Thank you so much ❤️❤️
Remember Crissie, so far your instincts have been very accurate when it comes to Avery's care. Avery is a very special child who breaks all the molds. Continue doing what you think is right for her. We love you, Josh, and the boys. Praying for you. This will be over soon ❤❤❤❤
Thank you so much ❤️
Take all the time in the world. Family come first, especially right now.
Remember stay positive.
My son who is 8 has severe dystonia and he definitely has not read the medical books he goes against them all. His dystonia is always worse when he is poorly, currently having more of his rescue meds due to a cold. 😢 Understand your reasoning for not taking Avery to nursery, we dont send our son to school for the same reason and touch wood he keeps well , but always has a wobble every now and then his brother is 10 so bugs do come into the house.
Hope you find a plan that works for Avery just remember there is such a fine line between seizures and dystonia. We have been in hospital before and nurses and doctors are panicking saying my son is having a seizure ( he does stand a high chance ) his sats are dropping but he is just doing a bowel movement and once past he is fine.
We are all here for you, hug your babies tight and just enjoy your family !!! 🤗❤️
Thank you so much ❤️❤️ you know your son best, I think all doctors should remember that when it comes to children and their parents xx
Just stopping by to say hello and let you know, you and Avery and your whole fam are in my prayers today! Praying for Avery’s condition to resolve itself and for her to be seizure-free! 🙏🏻❤🕯️ Sending love & light from across the pond! 🇺🇸❤
Whenever you decide to come back, we will still be here. It would be best to concentrate on Avery and the boys now. Coming from someone who is also disabled, I have also been subscribed to your channel since it started, and I will never leave you guys. Much love from TX.
Thank you so much ❤️❤️
You need to take care of you and your family . As a nurse and a Mom I can’t imagine what you are going through . Hugs and love to you and yours ! You are such an excellent Mom.
Thank you so much ❤️❤️
Please don’t feel bad- your beautiful family is most important. We will all be here waiting for you when you’re ready to come back💕 I hope you can get some more answers and find a treatment that helps Avery- I know she will be back at nursery in no time! Lots of love 🩷🩷
Thank you so much ❤️❤️
Crissie you seemed to get a lil teary eyed when you talked about cutting back on filming, I really want to sound an alarm with everyone else, you have to do what’s best for you and your family. Your true blue viewers will be here whenever you feel like posting, you take all the time you need. Continuing to lift my lil UK family in prayer. On to something brighter, in my local paper today it listed the top 10 vacation destinations, and I’m sure you’ve already guessed it the Maldives was right at the top! You special girlie I can’t wait til that day rolls around for you! Sending your family all the love, prayers, and good vibes possible! 👋👋 NC,USA🫶🙏☺️
Thank you ❤️ I feel disappointed in my decision because I work so hard in maintaining my channel, but ultimately I know the kids have to come first. I know it’s only temporary and hopefully I’ll come back with some positive updates. I’m really looking forward to our trip a break couldn’t come at a better time xx
Totally understandable! Take all the time you need! We will be here for you? I don't know how you do it all! God bless you and your family! Prayers! 🙏🙏🙏🙏🙏🩷🩷💙💙💙
Thank you so much ❤️❤️
You definitely need a break! Praying for Avery , you, and your family. Her little smile is so lovely! God Bless.🙏
Thank you ❤️
Hi Chrissie, sending you the biggest hug and lots of love. I know how challenging have a multiple health issues can be. I have been a long-term steroids for over 15 years and I'm not likely to be able to come off them anytime soon. They can't really affect your sleep so my thoughts are with you. I hope things improved for you all really soon. You have made exactly the right decision for yourself and your family. We will all be here when you are ready to come back. In the meantime, I hope things improve very quickly. Lots of love xx
Thank you so much. I figured it was the steroids waking her, she’s still waking up at around 3am, I’m wondering if her 2:30 dose on an empty stomach is giving her tummy ache xx
Crissie don't worry about taking a break. I started watching your videos because of the uncanny resemblance of Avery to my Annie at the same age, I continue to watch because you're a great Mom, and a real person. You don't sugar coat or over edit it's real life. Sometimes real life is hard, it's exhausting, it's not fair, and doing what you need to do doesn't leave time for what you want to do. You're doing what YOU need to do and when you're ready we'll be here❤.
Steroids are awful and I can only imagine how frustrated Avery must feel too. I also have to applaud your advocating for Avery when scheduling the next EEG test. You know what is best for Avery in order to get the most accurate test results.
My comments are always long here but I have to add one more thing...
You're about the same age as my little sister and I'm going to tell you the same thing I would tell her. This sucks and it's scary but you and Josh are going to get through it together. You're going to make sure every single one of Avery's doctors are on the same page and working together. Only do what you need to do for the next few weeks until you're getting enough sleep. Eat! Sit down and drink a cup of tea! Don't worry about the dishes or laundry if you're just hanging out with the boys...it can wait. The kids are your main priority and everything else will work itself out.
We don't know each other but I'll respond if you need someone just to listen to you vent. Best wishes to you all❤
Thank you so much ❤️ I really appreciate your kind words xx
@@mummyandavery Hi Crissie hope you're all doing well. I was talking with a friend who recommended you look up Cure Epilepsy on TH-cam. Kelly Cervantes has a daughter with Infantile Spasms and does lots of work with pediatric neurologists, parents, and leading experts in the field. It may be a helpful resource. Wishing you the best💓
@@mummyandaveryHey Crissie, hope you're all doing well and finally getting a little more rest. I know steroids can do a lot to kids, they get swollen, restless, grumpy, and very hungry. Overall not fun for everyone involved but especially Avery. Annie wanted to let you know we're thinking about you two and wishing Avery a speedy recovery ♥
Crissie take all the time you need - your focus must be your family first and foremost. Never apologise for taking the time you need -" put your own oxygen mask on first." I wish you luck on this journey and may Avery get some benefit from the new regimes. I love Avery's smile - it lights up her whole face and her beautiful brown eyes laugh as well. Hugs to you all.
Thank you so much ❤️❤️
Thinking of you all. U do what’s necessary for Avery and the family. Will miss u and hugs to u all
Thank you so much ❤️❤️
We’ll miss you. Hope you’re back soon feeling refreshed and with good news ♥️ most of us would probably take time off work when feeling like this and that’s all you’re doing so there is absolutely no need to feel bad. Hope to see you and Avery soon ♥️
Thank you so much ❤️❤️
100% understandable! Sending positive energy to you and Avery! I hope you have marvelous quality family time! ❤
Thank you ❤️
Take the time you need. Praying
Thank you ❤️
Praying for you Crissie and the family. May things improve. Blessings ❤.
Thank you ❤️
Thank you and wishing you all
the very best.
Thank you ❤️
Just found your channel a couple days ago. I just want to say Avery is so beautiful and you are such a good mom. I can tell you and Avery are both such a blessing to each other.
Thank you so much ❤️
Such worrying news, i really feel for you, big hugs, you do what is best for you and your family xx
Thank you so much ❤️
Take all the time you need. Prayers your way
Thank you ❤️
We will definitely miss you, but take as much time as you need! You and your family is a priority❤️
Thank you ❤️ I will miss you all too xx
Totally understandable! Best of luck for a good report for Avery and peace of mind. ❤️❤️
Thank you ❤️
Thinking and praying for you, Avery and all your family. ❤
Thank you so much ❤️❤️
Take care of yourself and your beautiful little family, I look forward to when you return. Hope everything goes well for Avery, sending lots of love and hugs.❤
Thank you ❤️❤️
Take as much time as you need ❤ I’m subscribed so I’m not going anywhere ❤❤❤❤! Love to you and your family ♥️
Thank you ❤️❤️
I will be praying for your family and looking forward to your return to TH-cam ❤❤
Thank you ❤️ I hope to be back soon xx
I hope u ur family have I nice break & Avery gets better & every1 stays happy & healthy as possible love u all
Thank you ❤️
Good luck with everything🥰xx
Thank you ❤️
Hugs mama!
Epilepsy mama here too. Our son had infantile spasms around 12 weeks of age. We did a round of steroids and ultimately were put on Vigabatrin when the IS came back after the round of steroids. Vigabatrin has a very low chance of peripheral vision loss(tunnel vision) that was only detected in a mice study, and that actual cases of human occurrence is very low. Vigabatrin can also help with other types of seizures and not just IS. Our son is almost 10 and has been on Vigabatrin most of his life with minimal side effects and we've tried numerous medications to wean the Vigabatrin, but it has worked the best so far.
I hope this can help your nerves surrounding this medication. Lots of love.
Thank you ❤️ I’m glad to hear vigabatrin worked for your son and this does give me some reassurance xx
Wishing all of you the very best.
Thank you ❤️
Thinking of you and the family and sending positive healing vibes. Take all the time you need ❤
Thank you ❤️
Definitely take all the time you need, as a special needs mum I totally get it!
It’s so important we look after ourselves and get rid of whatever pressure we can when things get more challenging.
Thinking of you and Avery 💕
Thank you so much ❤️❤️
Take care, regroup and spend time with your lovely family. We will all still be here waiting for yiu. Lots of love ❤❤❤❤❤
Thank you ❤️
Hey, im new here i only found you yesterday, i watched the 2 videos all about averys cardiac arrest, i had tears in my eyes at the end of those videos, youve been through so much, then i jumped to this video just to catch up on how things are now, il try and watch the rest of your videos but i just really wanted to send you and avery a big hug, and i just wish you all the best xx
That’s very sweet of you thank you so much ❤️❤️
Love, hugs and kisses to your beautiful family today, but mostly prayers. God Bless.
Thank you ❤️❤️
Crissie we completely understand your babies and sweet little family come first! I'm sure gonna miss your weekly videos, but will still see ya on Instagram! Please take care of yourself and that sweet little Avery 💕 I hope we get you guys back very soon!! Much love all the way from TN ❤️ ❤️
Thank you so much ❤️
I’m so very sorry for all you’re going through😢praying for Avery and hoping they can get meds figured out! We will be here waiting for you. Take your time. Family and health come first!
Thank you so much ❤️
Aww, you poor thing! Life can be so hard and harsh! Take all the time you need, yes you need to focus on all your family now! You have a lot on your plate, so be strong & we will never leave you!~❤🩹❤💯❤ LOVE and PRAYERS from NJ in America!
As u see everybody is very supportive and understanding of you 😊 Do what you have to do, as you wish, as you feel. You and your family come first, as they should. We love you anyways 💕 no matter what!! Best wishes girl 🥰
Thank you ❤️❤️
Look after yourself as well as your lovely family. You’ll all support one another to get through this stressful time. I’m glad you’re taking some time out of filming.If you’re out of sight you certainly won’t be out of mind.❤❤x
Thank you so much ❤️
❤y'all. Prayers and take care
❤️❤️
Dear Lady, of course TH-cam work has to be the first to go! You, Avery and the rest of your family will remain in my thoughts and prayers. All the best of wishes for the next few weeks to bring you good news and relief from this stressful time of waiting and watching. When you are able I'll be watching for updates. But please, that is not to be a priority for you. Much love from Vermont USA ❤
Thank you so much ❤️
Please take care of yourself and rest a bit. Will be missing you and Avery and the boys.
Keeping you and your in our prayers. Lots of love
Thank you so much ❤️
praying for you and your family,
Thank you ❤️
Your family needs you ❤ take care of your self too❤ God bless you all love to your family 🙏 hope Avery will get better soon ❤ 👋🇦🇹
Thank you ❤️❤️
I miss you all. Have a great trip with you and Josh. Have fun Avery is in geeat hands with your mum and sister in law.
Thank you so much ❤️
Bless ya just plz keep us up to date with all of this treatment and keep well in yourself I will definitely miss u and Avery as u no we r very a lik
Unfortunately my body does not do the same as some 1 else like myself
Take care lvya all xx❤
Thank you so much ❤️ I will update on Instagram and maybe TH-cam shorts xx
We miss miss you Crissie and your beautiful Avery but you do need a break. You are the most wonderful mummy. We will all be thinking of you all. Take care of you xxx💖👧🏻💖
Thank you so much ❤️
I will be right here when you come back. Take care ❤
Thank you ❤️❤️
Hey, we all love your vlogs, and care about you and your family, just do what you need to do, we will all be here for you, pop up whenever you need a chat, dont force yourself to any schedule, all the very best to you xx
Thank you i appreciate it ❤️
You are exhausted both mentally and physically . Sending all the good thoughts and prayers for all of you. Rest when you can and just be with your family. We'll be waiting when you feel ready to come back. ❤❤
Thank you so much ❤️
Good woman you well deserve to take time out I know you will be better for it xx see you soon and God bless you xxx
Thank you so much ❤️
I feel privileged to be part of the community of people watching your busy life and sweet Avery's bravery. Take all the time you and your family need. Praying for wisdom for you and Josh and the healthcare community in caring for your precious daughter.
Thank you so much ❤️
I’m so sorry you are having to go through all of this, taking a break is the right thing to do. You have to put yourself and your beautiful family first. It must be even harder for you as your mum has moved away ❤️. Don’t worry about TH-cam, I’m sure we will all be waiting for you when you feel able to return xxxx
Thank you so much ❤️
Wishing nothing but the best for Avery 😊 🙏🙏🙏🙏🙏🙏😊❤
Thank you ❤️
Oh no! Sure going to miss you guys but TOTALLY 100% understand! What a sucky situation to have to deal with. I can only imagine what little A is going through. The breathing issue alone for so long has to be tiring on her tiny body and now this. Hope she gets a break and return to full wellness soon. you will be in my thoughts and best wishes. The twins and I are ALL sick now, tested for strep, Covid, flu..all negative so they say just a virus, but seems to be getting worse. Thought son was turning a corner but he work up worse this am!! So frustrating, so I get it. ♥Alicia from Colorado
Thank you so much ❤️❤️ there’s so many viruses going around at the moment it’s been an awful winter for it. I hope you feel better soon xx
Do what you have to do. We understand. We will be here when you decide to come back.
Thank you ❤️
Please take time for Avery and your family! We will be thinking of all of you and praying!!! 🙏🏻❤🙏🏻🩷🙏🏻
Thank you ❤️
Take care of yourself and your babies. We will be here when you get back. And praying overtime for your family in the meantime.
Thank you so much ❤️❤️
Crissie its okay to relieve yourself of the video pressure. I’m really concerned for y’all and pray for strength and wellness for all of y’all. I’ll be here whenever you’re ready to talk.
Love y’all bunches 💙🩷💙💙💙🩷
Thank you so much ❤️❤️
I totally understand why your taking a break your putting yourself and Avery and your family first which is totally understandable your followers are right behind you and Avery and your family Avery is the most important and you need to take care of yourself it’s heartbreaking to see you going through all this hopefully you get some answers about everything as you said Avery has her own wee rule book she was so Alert and smiling tonight I want to wish you all the best of luck and hope you get better news after the next EEG take care of yourself and each other I don’t know what you are going through we have epilepsy in the family as you know my daughter is going through a lot as well with my grandson who has leukaemia but she has all right behind her as it’s takeing it’s toll on her as well look forward to seeing you when you are ready to come back massive hugs and love to you all especially. that gorgeous princess Avery she is a princess warrior stronger than we think you will know that better than any of us ❤❤❤
Thank you so much ❤️ my thoughts will be with your grandson xx
What a worry ! This poor girl doesn't get a break.
Even that cough would have us adults demented, and shes smiling her way through it.
Such a beautiful girl too.'
I know you will do what works best logistically for your family, but maybe if you got into bed at 8pm and Josh took care of the nights and then you can take over administering the 2:30am meds so you are both getting some decent rest and unbroken sleep.
You need to make rest for you both a priority as dealing with all this stress on top of sleep deprivation could hit you both hard.
I can tell they are all a priority for you, but you need to keep yourself well to be able to do this.
That sounds preachy, it isnt intended to be. I just think stepping back and leaving one parent to deal with it isn't your or Josh's way - time to tag team maybe ..from the bottom of my heart I wish Avery and you all the very best xxxxx
Thank you so much ❤️ not preachy at all, josh has been setting an alarm to do the 2:30am meds so we’re taking it in turns, I have annoyingly been waking up at 2:30 anyway. But it’s the thought that counts 😂 xx
Will miss you but don’t be sorry. You need this time with your family. Hope things get better soon. Avery gave us some beautiful smiles in this video - bless her heart!
Take care of yourself. Big hugs xxx
Thank you ❤️ I will miss you all too xx
@@mummyandavery look after yourself x
Darling im so sorry you and Josh are having such a rough time recently with gorgeous Avery, she doesn't get a break poor baby. You are stronger than you think and will get through this. We are all here for you. Sending love and hugs ❤❤ xsuex
Thank you so much ❤️❤️
You need to keep yourself healthy so you can continue to care for your family, perfectly understandable. Virtual hugs from across the pond ❤️
Thank you ❤️❤️❤️
No worries. You look after you and yours. We’ll all still be here. I wish you all well.
Thank you ❤️
Hope it goes well, take care ❤
Thank you ❤️
Praying everything goes well ❤ if you want you can keep us updated on the community tab so that you won't need to film shorts so you will have more time to relax and take care of Avery sending love and support ❤❤❤❤
That’s a good idea thank you ❤️
Will miss you all but totally understand. Family comes first ❤❤❤❤❤
Thank you ❤️
Of corse we understand❤!!!!!
Thank you ❤️
Do what you have to do for yourself and your beautiful Family. We will still be here for whenever you are ready. ❤️❤️❤️
Thank you so much ❤️❤️
Crissy, you need to do what’s best for you & your family. I’m going to miss your vlogs but look forward to seeing them again in the not too distant future. I also look forward to hearing about your Maldives trip. I’m doing 12 days Sri Lanka/ Maldives in October. My foster child was on Vigabatrin for over two years with no side effects. It has recently become less effective for her so we have had to wean her off it & add another med in. I know meds have different effects on everyone. My fingers are crossed that Avery has a positive reaction to it. Take care of you & your family. ❤ Wendy
Thank you for sharing your experience. Meds are so tricky, keppra used to work for Avery, it no longer does. We also recently found out the pill form of topiramate doesn’t work even though the liquid does. I hope you have a lovely time in October xx
A very wise mummy, you look so very tired, taking time out to digest & cope with all new information is absolutely thr right thing. First obligation & priority is Avery & your family....please try & grab some rest...so much going on. Healing hugs from Scotland xx
Thank you so much ❤️❤️
We will miss you crissie, but your doing the right thing don’t put any more pressure on your self. Take care of yourself . And with all our prayers Avery will soon feel better .❤️❤️❤️
Thank you so much ❤️
Do what is best for you and your family. The internet will be here. Hugs to poor Avery. She has gone through so much.❤😊
Thank you ❤️❤️
You have to take care of yourself so you can take care of the beautiful girl. Luv n prayers ❤
Thank you ❤️
We do understand! Take care of you and your family. Prayers for all of you!
Thank you ❤️
I will miss you sending all my love to you all you are one beautiful family stay strong ❤️❤️❤️
Thank you, I will miss you all too ❤️
Have you talk to her medical team about getting her a shaker vest it will help her to cough and it will help her to get all of the junk out of her chest and lungs? Praying for her and all of you guys.
I already have sadly they don’t proved them where I live xx
@@mummyandavery okay sorry
My niece had infantile spasms when she was an infant. She took a c t h. Although the side effects are horrific, She is on medication now and doing well.
She was diagnosed with hydrocephalus at 6 weeks old.
Needed a and subsequently developed epilepsy.
She is thirty three years old now and doing well.
I’m really glad to hear she’s doing well ❤️❤️
You come back when you are ready to, you look so tired and zapped out ,try if you can to rest up a bit ,love and hugs to you and your family ,love Avery's hair 😊❤❤❤❤
Thank you so much ❤️
🙏🙏🙏🥰🥰 love and prayers for you all...❤❤
❤️❤️❤️
Please do not apologise. You're doing what's best for you and Avery! See you soon xx
Thank you ❤️
@@mummyandavery You're more than welcome! See you when you are back. Take care of yourself. Lots of love xx
You don't have to be sorry for putting all your energy into your children and family especially having a child with disabilities I will be praying for Avery and hope that everything comes back good on her next EEG praying for your family❤
Thank you so much ❤️❤️
Hi take your time with always and when you and avery and your family too when you ready no rushing into it okay we always here for you and her always as my friends and so keep your time with her ❤😊
Thank you so much ❤️❤️
Really hard news for you to take. Do what you must to take care of yourself and your family. ❤️🇨🇦
Thank you ❤️