MADDIE'S STORY - INFANTILE SPASMS

[@MadelineGee]

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 🙌🏼🖤💜

[@Chakara_vikara_views]

what medicine did u give to ur daughter

[@MadelineGee]

Chandra Vicky she was on Prednisolone to stop spasms and is not on Keppra to prevent seizures

[@Chakara_vikara_views]

my son has infantile spasms yesterday only started treatment how days take to cure it!!?

[@MadelineGee]

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.

[@Chakara_vikara_views]

thank you so much

[@varshanmahabel2038]

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

[@lissygriffin1648]

Thanks for your kind words. I hope your son is doing well and responding to treatment!

[@faustinaalvarado9707]

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 🙏🙏

[@lissygriffin1648]

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!

[@humamir9349]

How is your daughter now

[@simrankhan7694]

Hows ur baby now

[@vitoriapureza7018]

Honestly, she is one of the most beautiful children I have ever seen. God bless her and you guys.

[@lissygriffin1648]

Wow thank you so much!

[@teads613]

My IS 'baby' is 26 and she graduated college and lives independently.

[@mohanrao0811]

Hello sir ur child infantile spasm ah she study ah sir.my son also is

[@mohanrao0811]

Ur daughter 26 age ah

[@lissygriffin1648]

Janice that is amazing to hear! Thanks for sharing your story!

[@factsunknown2255]

@@mohanrao0811 hi sir where r u from is ur baby ok now

[@factsunknown2255]

Plzz let me know her story

[@noor50291]

My boy has IS and it’s beneficial for us parents to see such videos, thank you 🙏🏻

[@lissygriffin1648]

Thank you! I hope all is well with your son!

[@ajnorton9295]

Thank you so much. We did exactly what you did and we got admitted, an EEG, and a diagnosis. It's IS. Thank you!

[@lissygriffin1648]

Thanks for the comment and I'm so glad to know this video helped! I hope all is well now!

[@annamendoza3533]

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.

[@lissygriffin1648]

Thank you, good luck to you and your son!

[@factsunknown2255]

Is he developmentally delay r not? Present what he is doing

[@lissygriffin1648]

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!

[@lyndsygillespie4184]

How is little one now ?, is she spasm free ? I really hope so she’s beautiful xx

[@lissygriffin1648]

@@lyndsygillespie4184 yes she is still spasm free! And she recently became the best big sister!

[@nmd298]

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.

[@lissygriffin1648]

Hope she has responded well to treatment!

[@bezvlastje]

How is she developing now? Is the smile back?

[@jennifercoxthrasher8827]

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.

[@lissygriffin1648]

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.

[@jennifercoxthrasher8827]

@@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.

[@lissygriffin1648]

@@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!

[@kellyhoover7750]

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??

[@lissygriffin1648]

Thank you so much - I appreciate the kind words and support!

[@bakeitu.p6453]

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.

[@lissygriffin1648]

I'm sorry for the delay - just seeing this. Did you get any answers?

[@jorgerivera2198]

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.

[@lissygriffin1648]

Jorge - I'm so sorry to hear! Were you able to get any answers?

[@jorgerivera2198]

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

[@maryannerazzano7692]

Same with my 8 month old granddaughter. She did an overnight EEG this week at CHOC in Southern California. Results were negative.

[@phthao1910]

Thanks for sharing your story. She is beautiful. God bless you all!

[@madelinemorales6789]

Thank you so much for this video u gave me lots of information god bless you and your family

[@lissygriffin1648]

Thank you so much!

[@carolpatelsky5768]

EXCELLENT STORY- THIS STORY CAN HELP SO MANY FAMILIES...

[@lissygriffin1648]

Thank you - we hope so!!

[@patricefreeman7167]

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 !

[@lissygriffin1648]

I'm so sorry to hear, I hope you're able to find a treatment that will help!

[@mzdmostunique]

How is your son?

[@erikagonzalez7156]

I've read the ketogenic diet helps too

[@cheskamontecalvo6408]

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? 😞😭

[@lissygriffin1648]

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!

[@poonammorajkar6409]

Is your baby is ok now? Want to know from you his development

[@princessokoji3836]

Please doctor, can malaria caused IS?

[@chernaethomas8075]

My 2 months old lil boy is doing the same thing I'm taking him to the hospital tomorrow please pray for my 🙏 son

[@BarbieloveXO]

My 10wk old daughter is having the same thing! What did the hospital say to you? It's so scary and makes me so sad to watch her go through this!

[@chernaethomas8075]

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

[@BarbieloveXO]

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?

[@lissygriffin1648]

Chernae thanks for your comment. I hope you were able to receive some answers and your son is okay!

[@rohitmahoday138]

Pleas help I have diagnosed 4 day ago . And now treatment is going on how much time he wil be normle .

[@afaqkhan4165]

How many days are ACTH injection treatments.plz reply me . My 7 old baby is infantile spasms.

[@dumindakumara4852]

My baby also suffering from this issues, kindly inform Wich medicine is better for this ,and what kind of further life activities

[@dhamotharanp4107]

Which treatment was gave to your beautiful child mam.. My one year baby affects same is from last 6 six months

[@Strawberrygoldd]

ACTH

[@princessokoji3836]

​@@Strawberrygoldddoes it have bad side effects?

[@Strawberrygoldd]

@@princessokoji3836 I don’t know sorry I just quoted what the video said

[@lisaeagan2127]

Hello! My daughter has a similar story. I would love to speak to you about it!

[@nadiashirazi3925]

Plz do share Ur daughters story all the parents will get hope

[@falohunadeola2568]

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.

[@lissygriffin1648]

So sorry to hear this - hope they are doing better now. No one should feel like they are a miserable mother!

[@nouraaltuwaijri6064]

Thank you for sharing this educative story, you are helping many families. I wish the best for you and Maddie.

[@lissygriffin1648]

Thank you so much - that was the hope!

[@joydomka9684]

What can cause infant spasms and is there any cure

[@lissygriffin1648]

We aren't sure what caused her IS, I think it varies depending on the case.

[@mansoorahmad5632]

God bless your child with happy and healthy life.

[@lissygriffin1648]

Thank you so much!!

[@afaqkhan4165]

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.

[@afaqkhan4165]

ACTH injection is complete treatment of infantile spasms???....

[@sunnysoni3127]

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.

[@lissygriffin1648]

Sorry I am just seeing this. I hope your son is getting better and seeing some improvements!

[@Learnsimply1234]

Can the spasms occur in sleep??

[@lissygriffin1648]

Yes, from my understanding they can be seen around sleep cycles.

[@kapilabishnoi7370]

Is there any developmental delay to your baby

[@lissygriffin1648]

She is now 6 months old and thriving in Kindergarten. No signs of developmental delays at all :)

[@supriyamorajkar539]

Mam my baby boy 8 month old .. diagnosed with infantile spasm..in Brain MRI it shows mild swelling..now yesterday dr starts with steroids...pls guide

[@lissygriffin1648]

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!

[@arvindpawar7953]

Madm mla pn sanga kay tretment chalu ahe ti plz rly

[@arvindpawar7953]

Mla tumhi 1 marathi manus vatle mhnun mi rly kela plz rly me

[@abhuwhite8738]

@@arvindpawar7953 consult child neurologist

[@kathythureen9341]

THE TRAGIC LIFE OF KATHY THUREEN.

[@Swissway1]

How was her birth? How long did 2nd stage last?

[@lissygriffin1648]

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.

[@humamir9349]

My son is having infantile spasms ...he is on vegabatrin ...he is 12 month old ...he has delayed development

[@lissygriffin1648]

Sorry to hear that. How is he doing now?

[@humamir9349]

@@lissygriffin1648 he is recovering

[@honeybunzilicious]

You’re so brave

[@lissygriffin1648]

Thank you!

[@anayajadoon3309]

Which medicine give ur child

[@lissygriffin1648]

We gave her ACTH

[@sugarcoma7662]

Such a beautiful baby

[@lissygriffin1648]

Thank you so much!! She's become a beautiful toddler!

[@nonjabulohlongwa2305]

I'm so happy for you cc m suspecting it with my son's they are3months old they are twins 😭😭😭😞

[@lissygriffin1648]

I'm so sorry. How are they doing now?

[@kathythureen9341]

what a beautiful girl.

[@lissygriffin1648]

Thank you so much 😊

[@humamir9349]

My son is having infantile spasms...he is on vegabatrin ..... I hope he will get seizure free..he is 11months old

[@lissygriffin1648]

I hope your son is doing well now!

[@humamir9349]

@@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,..

[@mukterhossain4843]

Can she talk properly

[@lissygriffin1648]

Yes - she is developmentally on track!

[@mohanrao0811]

Nice

[@ajnorton9295]

Our baby started having spasms 4 days ago, we are being told that we have to wait until Monday for an EEG to be ordered.

[@BarbieloveXO]

H0w did it go?? My 10 week old is having the same thing happening to her

[@ajnorton9295]

@@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.

[@lissygriffin1648]

Angie and Joel - I'm happy to see you pushed and got answers! Hope all is well now!

[@factsunknown2255]

@@ajnorton9295 now how is The Baby

[@factsunknown2255]

Is developmentally ok r not

[@pariparmar1788]

Hello mem

[@nancyjones6428]

It is very important to see a pediatric neurologist , take videos of baby's seizures. ,

[@lissygriffin1648]

Yes - 100% agree!

[@assuntagiordano3824]

Ma cosa fai vedere la sofferenza di tuo figlio