Kailani's Infantile Spasms

[ddmichael88]

Thank goodness she is doing ok now. We had a "scare" and I took my little one to Children's Hospital and it could've gone either way. Luckily, it was benign myclonic seizures. I'm so happy baby K recovered. Hallelujah. Blessings to you.

[musicmom02]

Wow...I'm so happy to hear that she is doing great. But, she sure looked so uncomfortable with the seizures. That had to be hard for you as her parents to watch this and not be able to stop the seizures as they were occuring. They really looked painful for her. I would have cried all the time. I'm glad that is in your past! God Bless and take care.

[mylovesofmylife]

gorgeous child

[modthepc]

Hi , my son is 1 year 2month old now, he is having this same kind of epilepsy from he was 7 month old and its still continue . I would like to know with your chils when and how this IS stops. Will you please reply me for this.

[DeBOtheBEAST]

my daughter was diagnosed with I.S at three months of age! she has had a relapse last year age the age of 1yr. and now she is doing seems to be doing something else. she is now 2 and she has down times where she just lays there makind her legs and arms stiff. we keep her active to try to get her to stop. but i dont know what else to do.

[vostergarza]

My 4 month old was just diagnosed wtih IS. Its so hurtful because she was developing perfectly normal until she started having these seizures. We are now home with her and she is on Predisone, and has been seizure free since last week. There was no underlying cause in the MRI, so we're almost positive she will be in the Idiopathic catergory. What medication did they put your daughter on and did you ever see her have a seizure again after starting the meds? Did she continue developing normally?

[72candrews]

Our daughter is 7 mos and was diagnosed with idiopathic IS in the last 3 weeks. she is currently taking 500mg of sabril twice daily but we are still having about 12 spasms daily.... how long does this take to kick in? the docs gave us a fairly positive prognosis, but it is hard to stay optimistic when you see no real improvement. she's had eeg, mri and ultrasounds. any info would be greatly appreciated.

Crissy in Canada

[LisanoLashes]

My daughter has been seizure free since Feb 4 on Vigabatrin. She had a repeat eeg on Monday which showed a huge improvement. Her development is back to what it should be and she is bright and happy. Check out my video of her laughing last week!!

[LisanoLashes]

My daughter was diagnosed with infantile spasms 12 days ago. So far it looks like its isiopathic. Your story gives me hope. There arent too many with a happy ending

[eshier365]

@LisanoLashes My son was completely healed o this as well. There IS hope...will be praying for you!

[PrInC3sSBeTch]

My son just started doing this it happens about 3 to 4 times in a row and then stops for the rest of the day i made an appointment to see his docter and im hoping its nothing serious because my heart breaks everytime i see him do this because i feel helpless as a mother.

[eshier365]

@PrInC3sSBeTch  What happened?

[piersoft2]

Hi, usa sabril and depakin

[mannamomof4]

My heart was breaking for Kailani and Mom as I watched this. Seeing your child go through this is so hard. I feel helpless when my son has his seizures. I'm glad to see she is doing so well now. You will help many people because of the struggles you have endured. God bless.

[shuuha2009]

like what makes them do that? i don't get it

[baryldrummer]

Poor baby. :( I'm glad she's doing better.

[gregfl]

Always thinking about you and your daughter, and always thankfull for being there when we needed someone who understood. Watch my channel for updates on Emma, she is doing wonderfull!

[Pikkelorus]

Funny to watch???????

You're at of your mind.

[NaturallyLifted]

Hello thank you for your video. My daughter is currently in the hospital again (2nd Opinion) for seizures. Our 1st Neuro has had her on Phenobarb for 6 weeks now. This childerens hospital suspects IS because it happens during sleep and right when see wakes up. They want to put her on ACTH which from what I read has severe side effects. Does my baby girl have any chance of growing out of this? Its so frustrating to fee helpless like this. Knowing that she may not have a normal life.

[jezztri]

Hi there,

When did you first notice these movements with your little one? I've got a four month old who also has some very strange movements, but they haven't been consistent enough for me to capture on video. I'm also a bit confused between a normal moro reflex and a spasm, and its worrying me to no end.

[DreaAZ]

I am sorry I wish i had more time to respond. keep an eye in when it happens. IS typically occurs when children are very sleepy , when they 1st wake up or just before falling asleep. Do they happen in clusters or 1 at a time? Keep an eye on eye movement and see if you can distract you little one and get the movements to stop. With IS, no matter what you do or what posisition they are in, the spasms continue. I hope eveything ends up ok and if you get truely worried, feel free to call me =)

[ndp11378]

@jezztri hi my daughter is 6 month old and we just found out that she ha infantile spasum and we went to neurologist and they put her on topirmate for 2 weeks but she still have episode so we want to know more from you so please reply me on nicky4212010@yahoo.com thank you i will wait for reply..

[SJGP123]

Please watch my videos and tell me if you think what my daughter is having is this...I don't think so but I am not sure what it is. Thanks!

[supernaturalmc]

My God. This is a seriously scary thing to see anyone go through. ESPECIALLY a child. Im worried for my friend because she has a newborn daughter (1+month) and she may have this. If anyone can help me to help her, it would really be appreciated. Im scared for her myself. Thank you. And congratulations to your child being seizure free for 2 years DreaAZ.

[araccot]

my daughter has the same apsms and she is 5 months. She a couple weeks ago and hasnt had any spasms since. have read alot about children becoming mentally retarded following this condition. Does anyone know,.

[fishy090]

how do u know if its a spasm or not.I have a 3 month old daughter and im not sure if she is having spasm or just doing normal baby stuff. Can u please help me out on what to look out for because im really confused!

[SilviaC54]

For me this are spasm. My son had the same. If your daughter has more than 1 spasm in a minute, I mean a lot of spasm the both arms who go up at the same time like on the video, film your daughter doing this, and show it to a neurologist

I hope that it will not be that

[BabyJihan]

Hello my daughter was diagnosed with Is last July when she was five and half months now she is 13 months and she did not have a spasm since September of last year she taking PT for physical now i am looking for a support group and share my story and hear other stories if you know a support group please let me know because other people do not understand what you going throw until you go throw it.

[Daniellechevrier]

What is PT? my son just got Infantile spasms and I havnt choose a drug, if ur child grows out of infantile spasms when they are 2-4 years old why do they have drugs from is?

[joezy29]

my daughter was diagnosed with west syndrome at 5 months....her neurologist told us that it was a good thing we caught them early....she went on vigabatrin it stopped the seizures right away...she stayed on that medication for a year and when she was weaned off i was so scared that they would come back and they didn't now she is a lively 2 yr old she passed all her delays she was having...although she's not saying sentences she does talk a lot and can read letters and count to 10...

[wakabaf]

My daughter was just the same as this video when she was 7 mo. Seizure was 200 times a day at its peak. 2 weeks she was suffered. ACTH and medication stopped the spasms. Now she is 5 years and a bit delayed but doing well. IQ is 90, normal range. Check my video you can see her reading picture book, singing a song etc.

[wakabaf]

I think it is very important to do SOMETHING when your baby is in spasm. Just watching the spasm go by is not good. You can do SOMETHING.

Baby has to learn that spasm is a BAD thing she should avoid. What I did was stimulating her sole with dozens of sharp toothpicks, showing her very sad face, and everything bad to her so spasm may be associated with bad memories.

Believe it or not, this worked to my daughter. I believe her brain got a new circuit to avoid spasm by itself.

[DreaAZ]

WOW, thanks for the comment. It is amazing to hear success stories after such a grim initial prgonosis. I sure hope to have such luck when my little girl turns 5. She is doing great now but I don't think the fear ever goes away

[toddwills]

My tears started rolling down my cheeks as I watched the video. I wish I have the power to heal.

Be well..

[gregfl]

Still thinking of you.  Emma is doing Great!

[Nabeelg71]

did your child have any delay or retardation even after the seizures stopped. My one year old son stopped the seizures after taking ACTH for one month, but he is delayed now, and i wish to know what to do now.

Thanks,

[byran1960]

Hello, am Carol from California. My nephew 6 months old was diagnosed IS (INFANTILE SPASAM).They went back home to London & the doc. suggested to have ACTH INJECTION. They started the ACTH yesterday. Is your son try the ACTH and how old your son diagosed the IS? tHANK YOU.GOD BLESS.

[Jenellesmommy]

My daughter had Infantile Spasms that looked exactly like that. We tried ACTH, but Vigabatrin worked well in finally stopping the spasms.

Best of luck to you!

[NicholasDynesGracey]

Hi, What tests were done in respect of possible neuroglycopenia at the time of Kailani's first diagnosis [when was Kailani weaned] and why did You think the first spasm/cramp/seizure happened ? Warm thanks; Nick Gracey, WATerian

[chrisn99uk]

These are exactly the same as my sons were 8 years ago. His cause has never been diagnosed. He was having up to 300 seizures a day. He is well, his epilepsy has changed to a mixture of tonic, complex partial and absence. We are at the severe end as Reims cannot walk, talk, is incontinent, autistic and partially sighted. However he is the most wonderful child. I hope things are better for you. The infantile spasms stop before or around 13 months and change to something different so good luck!!

[lucieann21]

My son has been doing this since he was born (now 4 months) i know something is wrong and he's had an eeg but was all clear. I am perservering and we are in process of seeing neurologist soon. what process/.tests did you have done to have her diagnosed? Thanks for any help.. it feels like its goin to be a long road ahead to find out exactly whats wrong with my son.. tho i suspect epilepsy

[DreaAZ]

It will be a long road, but it is a very learning experience for both of you. Kailani is absolutely a success case.

Her initial EEG showed a typical pattern of Infantile Spasms. This type of 'E" doesn't typically start at birth but on average 5-7 months old. If you feel something is wrong, DO NOT let down. Do your best to get an episode on video to show to a neuro. Clean EEG's do not mean anything, my daughter's last EEG was clear but she still has seizures.

[mdortenzio]

my daughter has infantile spasms just like your daughter. she has around 100 of the same ones your daughter has a day, quick ones. what worked for your girl?

[csds]

hello,

can you tell us the diagnosis from the doctors? We are seeing the same kind of spasms in our 9 month old daughter. I hope these are benign spasms...

Looking forward to your reply.

[cindylo62]

My beautiful Monkey Baby Girl has defied all the odds......you go Baby! Grandma loves you so much!