Kailani's Infantile Spasms

Kailani was Diagnosed with Idiopathic Infantile Spasms on October 28, 2006. She underwent 3 rounds of ACTH within a six month period. She was put on Topamax for a year, as a safety medication after her last treatment of ACTH. I am happy to say Kailani has been seizure/spasm free since July 13, 2009! She is now 4 and a half years old and absolutely beautiful and full of life. She attends a typical preschool and is at the top of her class. She is a great older sister to her 2 year old brother and continues to amaze us each and everyday!

Category:

People & Blogs

Tags:

• Infantile
• Spasms
• Infant
• Epilepsy
• Kailani
• Renai
• Seizures

[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 =)

[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.

[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

[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.

[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.

[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..

[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!!

[eshier365]

@PrInC3sSBeTch What happened?