Thank you so much for recording your story. My dad has been in the hospital for going on 7 weeks. Today he was finally diagnosed with OMAS. He's rapidly gotten worse every day to the point of not even being able to talk. Watching your video and hearing you talk gives me hope. Bless you sweet girl. I hope your story keeps improving and your have a full and amazing life.
@@amyroberts4054 Thank you Amy. Dad gain his angel wings July 21 last year. He was put on a ventilator after aspirating and never came off. They said it was a combination of OMS and his heart. I hope you are doing well. Huge hugs.
They checked my dad for EVERYTHING they possibly could. Between his toes, etc..... since he worked in the yard the day before then he got super DIZZY AND NAUSEOUS! He had to hold the walls to go down the small hallway in their house to the bathroom, etc...! My dad should still be here! I'm so glad to see someone speaking about this! Seriously! U don't know if it'll ever be YOUR LAST DAY ON EARTH! OMS is no joke and should be researched much more!
Hello I'm talking from Brazil My kid was diagnosed with this syndrome, and neuroblastoma. Nowadays she is well, she is four years old, but she can't get some vaccines. The disease is controlled with dexamethasone. I'm feel happy to know that you is an adult that survived with life quality, this make me hopeful about my daughter Thank you for sharing your history
My dad died of OMS 1/21/16! In a blink of an eye! I want more answers! Thank u for sharing. I still don't trust his whole diagnosis! But his eyes were going CRAZY!
Hi, I’m not quite sure why you would comment that I have passed away when I do not know you nor have ever had communication with you before?? Please do not leave toxic comments like that on my channel. OMS is a very rare and serious condition and we do not need trolls like you adding more challenges to our lives.
@@swintondavid Hi @swintondavid no not at all, it wasn’t to you! It was to another individual who has been commenting on all my videos saying I had passed away and giving specific details, when they do not know me at all. I have reported all of the comments and they have disappeared. So sorry if you thought it was aimed at you!
rawia abdalla Hi there, feel free to comment anything and I will get back to you ASAP. Are you part of the OMS Facebook group? It’s called OMSLIFE - Opsoclonus Myoclonus Syndrome Support Group. It is a private group meaning you can’t see posts / create any posts unless you are a member, and you have to be accepted to become a member. But it’s a very active group with people from all over the world (majority parents of children with oms) and it is extremely helpful 😊. If you ask to join one of the admins will be in contact! Sorry to hear about your daughter, but things will get better x
@@amyroberts4054 Thanks very much Amy for the quick reply, I really appreciate that... No I am not a member of the group.. I will send a request right now... If i I have any question I will write it to you... Thanks again❤
@@shilpasharma2757 hello Shilpa... she is fine but not 100% unfortunately ,,, she suffer from some symptoms like uncontrolable eye movement and also some behavioral changes.
This is so crazy to me! My dad died of this in 2016! It was and still is the worse time of my life! I wish we had more info, etc...on this disease! The Dr came back after the fact and said maybe he's got breast cancer as well!?! I'M STILL so confused. I lost my dad over????????? I still don't know 110%?
Hi ...My son was also diagnosed OMS before 7 yrs when he was 2 yrs now he is 9 . He cannot walk on his own , his eyes are also not stable . I thank God that neuroblastoma was not diagnosed in him , Doctors investigated a lot but could not find it .
Hi Pooja, first I’m so happy for your son that he is doing fine now. I’m from Canada. My seven months baby diagnosed OMS. He did all the test like Pet scan,MRI,Ct scan and thanks god he hasn’t Neuroblastoma. They doctors he said it is going by it self. My son hasn’t stable eye. He movies his right to the left and left to the right. If you give me some details I see ur son went through this problem. Thanks a lot
Thank you for asking! I am doing well - still have ups and downs but I am doing well, thank you 😊 please do not listen to the misinformation in the comments on some of my videos, the account has been reported
So I actually got OMS when I was about 18 months old. A lot of what you went through I had when I was a lot younger. I actually did not have a tumor either when I got it so they didn't know how to help it. I'm currently 23 and have been in remission since I was 5. Send me a privat message and I can let you know my story and maybe I can try and help. Hope all is well
Thank you so much for recording your story. My dad has been in the hospital for going on 7 weeks. Today he was finally diagnosed with OMAS. He's rapidly gotten worse every day to the point of not even being able to talk. Watching your video and hearing you talk gives me hope. Bless you sweet girl. I hope your story keeps improving and your have a full and amazing life.
I hope your Dad is recovering well, sending lots of love to you and your family!
@@amyroberts4054 Thank you Amy. Dad gain his angel wings July 21 last year. He was put on a ventilator after aspirating and never came off. They said it was a combination of OMS and his heart. I hope you are doing well. Huge hugs.
I don't know how to respond 100% here, but plz reach out to me! I did EVERYTHING I COULD POSSIBLY DO FOR MY DAD! PLZ REACH OUT! THANK U AND GOD LUCK!
OMG! I'm so sorry. I just read more of the messages. I'm so so so sorry! I totally understand! They're in heaven together!
They checked my dad for EVERYTHING they possibly could. Between his toes, etc..... since he worked in the yard the day before then he got super DIZZY AND NAUSEOUS! He had to hold the walls to go down the small hallway in their house to the bathroom, etc...! My dad should still be here! I'm so glad to see someone speaking about this! Seriously! U don't know if it'll ever be YOUR LAST DAY ON EARTH! OMS is no joke and should be researched much more!
Hello
I'm talking from Brazil
My kid was diagnosed with this syndrome, and neuroblastoma.
Nowadays she is well, she is four years old, but she can't get some vaccines. The disease is controlled with dexamethasone. I'm feel happy to know that you is an adult that survived with life quality, this make me hopeful about my daughter
Thank you for sharing your history
I’m so glad to hear your girl is doing well. Sending love to you and your family!
Yes, I was told neuroblastoma was an accompaning diagnosis! My dad was in his 70's. So sad, so little research, so sad, because my dad's GONE now!
My dad died of OMS 1/21/16! In a blink of an eye! I want more answers! Thank u for sharing. I still don't trust his whole diagnosis! But his eyes were going CRAZY!
I am so sorry to hear about your Dad. It really is a nasty disease 😢 my thoughts are with you and your family at this time x
It's usually a small child's disease, and my dad was in his 70's!
Your story is incredible! Thank you for sharing with the world!
@@bhushanbhagat1045 that’s so sad.
Hi, I’m not quite sure why you would comment that I have passed away when I do not know you nor have ever had communication with you before?? Please do not leave toxic comments like that on my channel. OMS is a very rare and serious condition and we do not need trolls like you adding more challenges to our lives.
@@amyroberts4054 hi, was this reply to me? I’m not sure what gave you that impression.
@@swintondavid Hi @swintondavid no not at all, it wasn’t to you! It was to another individual who has been commenting on all my videos saying I had passed away and giving specific details, when they do not know me at all. I have reported all of the comments and they have disappeared. So sorry if you thought it was aimed at you!
@@amyroberts4054 some people are horrible. Glad they’ve gone away.
Thank u so much for this video! Regardless! Thank you!😊
Dear Amy...
I really need to contact with you...
My 1.5 years daughter diagnosed with the same syndrome and we still suffer from it ( she is 3.5 now)
rawia abdalla Hi there, feel free to comment anything and I will get back to you ASAP. Are you part of the OMS Facebook group? It’s called OMSLIFE - Opsoclonus Myoclonus Syndrome Support Group. It is a private group meaning you can’t see posts / create any posts unless you are a member, and you have to be accepted to become a member. But it’s a very active group with people from all over the world (majority parents of children with oms) and it is extremely helpful 😊. If you ask to join one of the admins will be in contact! Sorry to hear about your daughter, but things will get better x
@@amyroberts4054 Thanks very much Amy for the quick reply, I really appreciate that...
No I am not a member of the group.. I will send a request right now...
If i I have any question I will write it to you... Thanks again❤
Hey rawia abdalla is she fine now???
@@shilpasharma2757 hello Shilpa... she is fine but not 100% unfortunately ,,, she suffer from some symptoms like uncontrolable eye movement and also some behavioral changes.
@@amyroberts4054 my 2 year son is suffering from same. He went through surgery for neuroblastoma this month.
This is so crazy to me! My dad died of this in 2016! It was and still is the worse time of my life! I wish we had more info, etc...on this disease! The Dr came back after the fact and said maybe he's got breast cancer as well!?! I'M STILL so confused. I lost my dad over????????? I still don't know 110%?
Hii my daughter is also suffering this deasis ...she is 2 and half years
Sending love to you and your daughter!
Hi ...My son was also diagnosed OMS before 7 yrs when he was 2 yrs now he is 9 . He cannot walk on his own , his eyes are also not stable . I thank God that neuroblastoma was not diagnosed in him , Doctors investigated a lot but could not find it .
Hi Pooja, first I’m so happy for your son that he is doing fine now. I’m from Canada. My seven months baby diagnosed OMS. He did all the test like Pet scan,MRI,Ct scan and thanks god he hasn’t Neuroblastoma. They doctors he said it is going by it self. My son hasn’t stable eye. He movies his right to the left and left to the right. If you give me some details I see ur son went through this problem. Thanks a lot
My 2.5 year daughter same syndrome and we still suffer from it
Hello Gurdeep ..R u from India ?
Sending love to you and your daughter!
How are you right now ?
Thank you for asking! I am doing well - still have ups and downs but I am doing well, thank you 😊 please do not listen to the misinformation in the comments on some of my videos, the account has been reported
So I actually got OMS when I was about 18 months old. A lot of what you went through I had when I was a lot younger. I actually did not have a tumor either when I got it so they didn't know how to help it. I'm currently 23 and have been in remission since I was 5. Send me a privat message and I can let you know my story and maybe I can try and help. Hope all is well
I’m so sorry to hear you had to go through a similar journey, sending love to you and your family!
How r u now.....
I am doing well thank you for asking 😊
My child have omas with neuroblastoma
My brother's son is diagnosed with OMAS with neuroblastoma. Neuroblastoma surgery done last week.How's your child now?
@@Amritkumar-nb1jj after chemo neuroblastoma classified but omas still a problem
@@naveensharma1253 OMAS symptoms is not improved? Doctor is giving IVIG and steroids and rituximab for OMAS. What about your child's treatment?
@@naveensharma1253 OMAS symptoms are improving day by day or no improvement?
@@naveensharma1253 OMAS symptom is improving day by day or no improvement?
Hlo Amy
Facebook I'd plz