Hi my daughter had many episopdes similar to these i searched for months trying to find out what they was and i believed she had infertile spasms but after a visit to great ormand street hospital and 2 eegs and an mri scan she was diagnosed with myclonic seizures a form of epilepsy that is very similar on movements with infertile spasms she is now taking keppra to control her seizures she started the treatment 3 weeks ago is slowly increasing her meds until eventualy she is seizure free, allrea
How is Kendai doing now? My daughter is now 2 but started infantile spasms at 12 months old. She went on Vigabatrin and it stopped them. She was diagnosed at 5 months old with Tuberous Sclerosis so spasms I guess are common. She also has partial seizures.
my prayers go out to you. i certainly understand what you all must be going through. the ACTH was effective in stopping the seizures...so far. there is a possibility of them returning anytime between the ages of 2 and 3, so we are thankful for each day. kenadi is still severely delayed from her birth trauma, but she received her gait trainer from the birth to three program just days ago. she is an angel in my life. thank you for asking. please give your little one a squench for me.
My daughter has severe neurological issues also. If an answer a "specialist" doesn't seem to make sence, it probably doesn't. There is a Doctor out of Ventura Ca, working with UCLA named William Goldie, Neurologist, He is incredible. Will not stop until a true answer is found. Find him or find a Doctor who is as tenacious and with as big a heart. Good luck.
My son was also treated with ACTH for 3 months sucessfully. I called the school district to get in home services for his lost milestones, he received physical therapy, occupational therapy and later speech therapy all in the home and at no cost. I would encourage you to do the same if your child shows any kind of developemental delay
Your son is doing everything my daughter doing not but the speech therapy because she only year old but she taking topamax twice a day is your son talking that
Yes. Kenadi was diagnosed with IS at The Cleveland Clinic Children's Hospital in Cleveland, Ohio. We immediately began the daily ACTH injections and have two months to go before weaning her. It has been since December 10 that we witnessed a clinical seizure. Her most recent EEG still showed the hypsarrhythmia, but not as bad. Despite the side effects it is good to see her smile and talk again. We continue to pray and trust in God.
I agree that this looks like IS...Drew didn't have the eye involvement, but the spasms look so similar. Don't take no for an answer. Fight for this little girl (as you obviously are). I will be praying for her total healing.
This looks like classic IS especially with the eye involvement - early diagnosis is extremely important - I wish you all the best with this beautiful baby.
Thank you so much for your input. My heart breaks for this beautiful child of God. We are traveling 20 hours away to the Cleveland Children's Hospital for an accurate diagnosis and hopefully treatment. Thank you again.
Hi my daughter had many episopdes similar to these i searched for months trying to find out what they was and i believed she had infertile spasms but after a visit to great ormand street hospital and 2 eegs and an mri scan she was diagnosed with myclonic seizures a form of epilepsy that is very similar on movements with infertile spasms she is now taking keppra to control her seizures she started the treatment 3 weeks ago is slowly increasing her meds until eventualy she is seizure free, allrea
medicalemergency 10 months ago
looks like john pope
tjomc82 1 year ago
what does this mean?
majaken4 1 year ago
How is Kendai doing now? My daughter is now 2 but started infantile spasms at 12 months old. She went on Vigabatrin and it stopped them. She was diagnosed at 5 months old with Tuberous Sclerosis so spasms I guess are common. She also has partial seizures.
amysarahh 1 year ago
my prayers go out to you. i certainly understand what you all must be going through. the ACTH was effective in stopping the seizures...so far. there is a possibility of them returning anytime between the ages of 2 and 3, so we are thankful for each day. kenadi is still severely delayed from her birth trauma, but she received her gait trainer from the birth to three program just days ago. she is an angel in my life. thank you for asking. please give your little one a squench for me.
majaken4 1 year ago
My daughter has severe neurological issues also. If an answer a "specialist" doesn't seem to make sence, it probably doesn't. There is a Doctor out of Ventura Ca, working with UCLA named William Goldie, Neurologist, He is incredible. Will not stop until a true answer is found. Find him or find a Doctor who is as tenacious and with as big a heart. Good luck.
mikielynne 2 years ago
My son was also treated with ACTH for 3 months sucessfully. I called the school district to get in home services for his lost milestones, he received physical therapy, occupational therapy and later speech therapy all in the home and at no cost. I would encourage you to do the same if your child shows any kind of developemental delay
nikkifromsaco 3 years ago
Your son is doing everything my daughter doing not but the speech therapy because she only year old but she taking topamax twice a day is your son talking that
BabyJihan 3 years ago
Yes. Kenadi was diagnosed with IS at The Cleveland Clinic Children's Hospital in Cleveland, Ohio. We immediately began the daily ACTH injections and have two months to go before weaning her. It has been since December 10 that we witnessed a clinical seizure. Her most recent EEG still showed the hypsarrhythmia, but not as bad. Despite the side effects it is good to see her smile and talk again. We continue to pray and trust in God.
majaken4 3 years ago
Did you get a diagnosis yet? Praying.
KenandLuPlus2 3 years ago
I agree that this looks like IS...Drew didn't have the eye involvement, but the spasms look so similar. Don't take no for an answer. Fight for this little girl (as you obviously are). I will be praying for her total healing.
eshier365 3 years ago
We will pray for you and this beautiful child. Keep faith.
pickytwo222 3 years ago
This looks like classic IS especially with the eye involvement - early diagnosis is extremely important - I wish you all the best with this beautiful baby.
pickytwo222 3 years ago
Thank you so much for your input. My heart breaks for this beautiful child of God. We are traveling 20 hours away to the Cleveland Children's Hospital for an accurate diagnosis and hopefully treatment. Thank you again.
majaken4 3 years ago