My son has Infantile Spasm. He diagnosed in 2019 at 6 months. his 2years old now and until now its going through. Hope he will recover to this type of seizure. To get a well treatment. Thank you for sharing your story.
Our daughter has Infantile Spasms! Diagnosed in February 2019 at 6 months and seizures stopped with prednisolone! Praise be to God that she is 7 months seizure free 🙌🏼🖤💜
Chandra Vicky like he was diagnosed in the hospital and prescribed treatment? Every single situation is so different but we were very fortunate to have spasms stop the day after starting treatment. We’re coming up on a year seizure free.
Very informed video. My 7 months was diagnosed with is. Eventhough as a mother I had noticed it but not too early when she will cry all night without me seeing what was happening till she was 6 to 7 months. We saw a neurologist who ran an eeg test on her and confirm it's actually is. The doctor started my baby with epilim syrup 2.0 my and prednisolane 2.5my and she is ok at the moment THANK God. I wish everyone well but every case is different.
Thank you to everyone who has commented and shared your story! We are about to come up on 2 years this week. It means so much to know that it's helped parents push to diagnose or helped them during treatment!
My daughter is 7 months old and we are on day 12 of ACTH treatment for IS. Still no diagnosis for her IS either our daughter is also fussy, irritable, no smiling. We also were dismissed at us first noticing spasms and eventually went to the ER and admitted. Thank you for sharing your story. We are hopeful our daughter responds to the ACTH as well.
I hope all is well with you and that she is improving. Feel free to message me on Facebook under Lissy Griffin if you have any questions or need support from another IS parent.
@@lissygriffin1648 Thank you for the reply. I do not have social media accounts but I do appreciate you reaching out. My daughter has been diagnosed with TSC which causes the IS. She did not respond to the ACTH medicine but is now on Sabril and the IS has been controlled, which we are very thankful for! No one can prepare you for the effects of ACTH on your child but I am thankful for the medicine and for those that it has helped like your daughter.
@@jennifercoxthrasher8827 I'm so sorry to hear - I hope that you have success with the current treatment! I will be thinking of your daughter and family!
WOW!! THIS MAMA HAS DONE HER HOMEWORK, NOT TO MENTION THE EDUCATION SHE RECEIVED ALONG THE WAY, WATCHING HER DAUGHTER GO THROUGH IT ALL... REALLY, IT COULDN'T HAVE HAPPENED ANY BETTER THAN THIS, DAYCARE WENT ABOVE & BEHOND TOO, THEY PICKED UP ON SOMETHING THAT ALOT OF US WOULDN'T HAVE NOTICED... A LESSON TO ALL OF US, IF YOU'RE NOT HAPPY WITH THE ANSWERS YOU'RE GETTING FROM YOUR REGULAR DOCTOR, GO ELSEWHERE, GET BUSY, ASK QUESTIONS, RESEARCH, VIDEO & DOCUMENT EVERYTHING... NONE OF THIS WAS AVAILABLE YEARS AGO, I HAVE GREAT RESPECT FOR ALL THE MOMS THAT CAME BEFORE US, HOW IN THE HELL DID THEY DO IT??
Great video to raise awareness, we are currently going through trying to understand what our son (7.5 month) could be going through started to have some shudders and had an EEG 3 days later which was normal but he is still occasionally getting, we are worried.
Thanks Lissy. We got a few neurologists to comment on our videos and the eeg and they believe it isn’t what we suspected but connected to a tummy bug that he had that caused diarrhoea and pain for 3.5 weeks. We are still monitoring him and have routine appointments lined up. fingers crossed it
Thank you for making this video. I have a 3 month old and he has been doing this very thing since almost 2 months old. I mentioned it to his doctor today and she referred us to a neurologist. I have epilepsy so it is very concerning to me.
My baby was also diagnosed of infantile spasm due to subarachnoid hemorrhage. But our neuropedia didn’t introduce the ACTH idk if they know it or it isn’t practice here in the Philippines. The medications they prescribed was Leviteracetam, phenobarbital and topiramate. I’m crying your baby looks good she looks so healthy. My baby was refer to neurodevelopmental he’s 1 year old now and lot of delays that need to catch up according to neurodev’t she seen some autistic features and my baby’s development according to her evaluation is only 1-4mons. He can’t even sit nor walk, he can’t talk like mommy or dada. He needs a lot of therapy to become a habits but not to normalized because the effects of his seizure to his brain that’s subarachnoid hemorrhage became necrosis and there is no immediate intervention. it affects all the parts of his brain. Can you imagine what I feel as a mom? 😞😭
I'm so sorry, I cannot imagine. It's what drives me to spread awareness so that every child gets an early diagnosis and treatment. I wish you and your family the best of luck!
To be honest they're trying to act like it's nothing but my son had gotten his 2 months vaccines last Wednesday and right after is when I noticed it I think it has something to do with there's shots
Omg that's so scary!! She hasn't gotten her shots just yet we are getting them next week :( I have heard that seizures can happen with vaccines though and that really scares me! But obviously can't go without the vaccines ! :( I'm so sorry I hope they will do something about it! Has he had a fever?
My son is also have IS. He is diagnosed with some steroids. His seizures are almost gone but he is not holding anything with his hand and cant even try to walk. He is 15 months old.
My doctor also give us ACTH injection . ACTH injection is complete treatment of infantile spasms. Plz reply me .I am very worried to my son .plz pray for my son he is nothing holding and eyes and cluster is so many now I started ACTH injection .plz guide me ACTH is complete treatment and how many injection.my doctor asked me 3 ACTH injection is complete and vigabtrin is strated.
@@lissygriffin1648 ...He was on ACTH for 1 n half month....and spasms stopped for one month..nw spasms came back....i m worrying for my baby......there is no way out,..
Beautiful story and gives me so much hope. Son was diagnosed 3 days ago and has started treatment. Hoping that my little dude gets well and seize free soon. In all the bad Maddies story is a ray of light
My daughter is 6 months old and was diagnosed with infantile spasms april 2022 Your story reminds me so much of what’s happening to my babygirl she lost her smile hope and praying to get it back . She eats more gaining more weight .you gave me some hope in my babygirl and more faith in praying everyday for my babygirl speedy recovery with acth medication 🙏🙏
I'm sorry for your daughter's diagnosis. I hope that by now you are seeing results from treatment. Feel free to PM me on Facebook or Instagram if you need support. Today is 4 years since she was diagnosed and she is amazing!
My son was diagnosed with infantile spasms at 9months he’s now 2 weeks from 1 years old and no meds have helped it’s so hard to watch him go through this !
It is well Right now, I'm the most miserable mother on Earth. I've been going from one doctor to another, hospitals and all, the doctors here don't actually know what to do (or maybe I've not met the right doctor). My baby clocked 5months yesterday, meanwhile, it started at day 10. So almost 5 months now, and we've not gotten any medication that atleast, reduce the frequency, sometimes, all night, other times, half a day. His seizures are also confusing. Some time, it's generalized clonic tonic seizure, or focal, but this days, it's IS but it takes longer seconds even up to a minute to relax when he stiffens up, with 3 minutes interval. There is less awareness around me. At first, I even though it was spiritual, when the doctors told me there is wrong with the boy that could cause seizures.
I wish I could provide guidance, but I am not a medical professional. I would continue working with specialists who are experienced specifically with IS if you have access to them!
She was an emergency c section but no other complications at birth or other factors leading up to her diagnosis. She has been spasm free since May 2018.
@@BarbieloveXO Sorry for the delay, everything went very well. We went to Childrens hospital and we were there for a week, MRI EEG Lumbar puncture ect. Long road for us! Spasm free for 7 weeks now. We are lucky that we did not wait, we pushed and pushed until we were heard. Thanks, blessings.
