Infantile Spasms

[jaimeiam]

This is so hard to watch. Thank you for sharing, it helps me understand as a nursing student. My niece also had a single spasm that we caught and treated them w ACTH.

To help me "see" these as specifically spasms vs a seizure, tic, or even GERD/hiccups... Do I correctly observe an inward movement, in other words like he is instantaneously going into a fetal position, then it relents?

[bucyboy]

His seizures are a little better. He has a helmet but doesn't like to wear it. His shoulder harness now stops him from hitting his face on anything. Hopefully new meds will help him soon!

[redd63boxhead]

So sad God bless and love from my heart

[juliacball]

WHat a handsome little chap. He must bring you daily joy. God Bless x

[kekokuvzu]

I honestly cried! He is beautiful and I pray for him!

[misswilline]

a boy i know has a helmet.. i know it looks a bit sad but he doesn't hurt his head over and over again.. idea?

[MrMcshane70]

wouldn't he be more comfortable lying down so he doesn't hit his face? How often does he have these? Doesn't his spinal cord get whiplashed? Are muscle relaxers out?

[bucyboy]

@MrMcshane70 He was having up to 100 seizures a day. He is and has been on many different medications. He is now 6 years old and they are not as severe as you see here, how-ever he still has several episodes a day. He goes to school and for the most part is a happy little boy. He's a good spirit and we feel blessed to have him. We will continue to do what-ever we can to make his life the best it can be. Thanks for your concern.

[bucyboy]

@MrMcshane70 His seizures are a little better. He has a helmet but doesn't like to wear it. His shoulder harness now stops him from hitting his face on anything. Hopefully new meds will help him soon!

[PaudorMalta]

try Quantum Touch ------

[juliemagdalene]

Beautiful little boy. All I kept thinking was how confused and upset he looked when it was happening.

[happyendin9]

such a brave little boy! keep your spirits up. all the best x

[dfarmer56]

Tommy is so precious. He is bless to have you. 

[titansful]

He is sooooo beautiful. God bless you all. My son has seizures and I know that it is hard. Take care.

[bucyboy]

They say there is no cure for Thomas. They don't believe he will ever walk or talk. He loves to go to school, but now the state says we either have to update all his immunizations or get a doctors note saying he shouldn't have them or he can no longer go to school.

[bucyboy]

The problem is, it was the Dtap shot that made him this way. He began seizing 2-3 days after his 4 month shot. Another shot could kill him or leave him totally brain dead. It's a terrible situation. They all know the shot did this to him, but they say it's for the greater good. VAERS still won't compensate my son, they just say the heck with him, oh well, we're sorry and too bad!

[bucyboy]

They say there is no cure for Thomas. They don't believe he will ever walk or talk. He loves to go to school, but now the state says we either have to update all his immunizations or get a doctors note saying he shouldn't have them or he can no longer go to school.

[jlbfa]

Oh, that was so hard to watch. What a sweet little guy. I hope a cure or treatment is found.

[lllstupidmovieslll]

the first spasm gave me a huge fright.

[amysarahh]

My daughter is 2 and at 1 she started having infantile spasms and her head would drop just the same. She also punched her right arm forward and sometimes her head would bang off the crib. She also has partial seizures and at 5 months old she was diagnosed with Tuberous Sclerosis Complex. Vigabatrin stopped the spasms pretty quickly.

[angelfacejeep]

I found your video informative. I'm researching this because my 8 month old is having severe head jerks which pulls him down to the floor when he's sitting up. He's recently been diagnosed with epilepsy. He's also had 3 full blown seizures. Three EEGS and an MRI at a local hospital were normal, but I sought a second opinion, where they did their own EEG and it showed spikes. He's on three different medications. How is your son now? God bless you, your wife and your precious son.

[bucyboy]

They say our son will have this affliction the rest of his life. He has irreversible brain damage and they don't believe he'll ever walk or talk. He does have a very good attitude despite all these difficulties. His smile can melt just about any heart. His mother and I are still hopeful that he can have a happy life. I know he makes our lives happier every day!

[cherchee]

omg...this scared the crap out of me. how many times a day does he do this?

Im so sorry for your family.

[bucyboy]

Thomas has had over 100 seizures a day. It's heart breaking. He had an allergic reaction to his 4 month DTap shot. They say it is very rare to have this severe of a reaction. Long term diagnosis doesn't look much better. He's a wonderful boy with a great attitude despite this affliction. His mother and I couldn't love him more.

[MTayde]

will he be ok?

[Jaebabi91210]

HOLY CRAP! I'm so sorry that this has to happen to you, children shouldn't be allowed to suffer

[lapinboo]

brought tears to my eyes God Bless him Always

[admoscato]

This little boy looks like my son and he is in the same high chair. He had infantile Spasms. We only used soft toys because we did not want him to hurt himself. None of the Meds Worked. He would have ten to 20 seizures a day. The only thing that helped him was the Keto Diet. He is now Seizure Free. God Bless you and your Family.

[poecticallyversed]

Hi, mom of a little girl with IS too. How you gotten seizure control yet? If not what meds is he on and have you tried? Many blessings to tommy!

[lilkelza7]

aww poor little boy. i wish him the best!

[rangerjr1]

wtf, why is he bangin his head on that pillow?

[pix4434]

Oh My Gosh that has to hurt even with a pillow on the tray. Poor little guy. How is he doing now?

[bucyboy]

He's still seizing, but we use a harness to protect him from hitting his head. He has a great attitude, but still has to deal with the seizures every day. Thanks for asking!

[bucyboy]

Oh yes, we have seen at least a dozen Neurologists. They all say the same thing. Long term does not look good.

[eshier365]

Have you seen a Neurologist.  I would go right away!

[bucyboy]

Yes, some of the top doctors in the country believe it is from the "P" part, or the Pertuses part of the Dtap shots.

[mudnmusic4fun]

Wow, poor guy. I know they say this kind of stuff doesn't happen from baby shots but, do you think that's the case here? It would sure seem so.

[pickytwo222]

Poor little guy - you can just see the confusion in his little face. I hope you have a found a good doctor to work with. I wish you all the best with the beautiful little boy.

[bucyboy]

Thank you!

[bucyboy]

This is my son Thomas. He began seizing after his 4 month baby shots.