ISAWchat

With the urgency to catch and treat IS as soon as possible, what is the best way to handle situations like this?

That's a really good question. I hope it doesn't happen often, but if it does, I would call child neurology offices and ask for an urgent appointment. When they ask why, say "my baby is having spasms".

It is extremely urgent to treat as quickly as possible.The outcomes are better when treatment with appropriate medication takes place in a timely fashion - that is within a day or two.

At that point it's just a description ("spasm" in the non-medical sense), but should be enough to get the office moving in the right direction.

Also - what has worked for our patients is to refusw to leave the ER until they speak with a pediatric neurologist!

She had already scheduled an appt with a neurologist (new pt) but I believe she posted her video to the TS Alliance FB page on a Friday night, which is why I suggested the ER.

Actually, say "My baby is having infantile spasms."

The ER was PERFECT advice - they need to get in for a video EEG right away.

Thank you! I hope the next parent doesn't have to deal with this type of frustration.

Where to start? There are a few that I do share. Videotape anything that looks suspicious to share with the doctor, know that hypsarrhythmia is not always present in an eeg if a child is having infantile spasms, and SABRIL!!!

Trust your gut, don't stop until you are comfortable with the answers, keep researching and talking to other parents, videotape if you can, see an epileptologist and developmental ped, and sign up for Early Intervention in your State as soon as possible.

Don't give up and don't lose hope.

There are a lot of success stories out there. Sometimes it takes time for IS kids. My child started talking at age 4.5. Anything is possible. More and more success stories every day thanks to the clinicians and advocates participating here and #ISAW2015.

My Charlie has been on vigabatrin since 2012 and it has been our miracle. He is monitored every three months. No vision loss whatsoever. I would choose minor peripheral vision loss over damaging spasms. The choices IS parents must make.

@RyansMom2 That's good news!

It's also important that parents understand the risk is peripheral loss, not "blindness"

@StevenRoberds I've seen a few parents misunderstand it as blindness.

@StevenRoberds YES. The white paper TS Alliance put out has a great picture that shows what that loss really means and for me, an IS mom, it is NOTHING compared to what can happen if the IS is uncontrolled.

Here's the white paper for reference: http://www.tsallianc...

I wish I had pushed for an overnight EEG when we were told he was "cured" based on brief EEG. Two years later, he was still having hypps but only showing on the long EEG.

@RyansMom2 I used to do the "what if" - now I try and use our experience to help others.

Yes Susan that's exactly where I am. I don't know if it would have changed his outcome but it might change someone else's outcome so I hope my experiences will help other families!

You're a good mom! It's hard not to think of what the outcome could have been.

What are common misdiagnoses of infantile spasms?

Thank you and welcome! @ Patty Mcgoldrick and Dr. Wolf, Susan Jorski asked a question posted below. Could you answer that for her?

@tsalliance I was told by our ped that my boy was probably teething. A lot of the families I speak with are told it is acid reflux.

Infantile spasms are often mistaken for colic or stomach upset or even "tics"

My son's spasms were misdiagnosed for 3 years due to no hyps showing up on EEG.

Was this with overnight EEGs?

we were not offered overnight EEG until two years into our IS experience and that was because we switched centers. We were told by first center that hypps were gone but that's because all of our EEGs were so brief.

They were scheduled, in-office EEG's. His seizures/spasms would always happen before or after a visit to the dr. I sent videos (he's 17 now so they were VHS) and I'm pretty convinced she never looked at them.

He was finally diagnosed when we looked into seizure surgery and had an overnight VEEG.

Very important - we always need 24 hour EEGs, preferably with video to time lock the events with the EEG findings

Again, thank you! I wish more doctors would follow this protocol.

General pediatrician and ER doc education is key. Keep raising awareness all year round through our ISAW initiatives.

Agree wholeheartedly!

Back when Michael was finally diagnosed he started Vigabatrin (now Sabril) and his spasms stopped with the first dose. This was after trying 8 different medications. He hasn't had a seizure since.

Vigabatrin is recommended first-line therapy for infantile spasms associated with TSC.

There are some second-line options in case it doesn't work, but it often works quickly and well.

ACTH is the other first-line treatment usually recommended for infantile spasms not related to TSC.

Vigabatrin or ACTH -

Are there any risks associated with treatment options?

For Vigabatrin, we were made aware of the possible loss of peripheral vision, but I understood this to be over a long period of time at a high dose. For us it wasn't an issue - possible loss of PV versus brain damage?

Michael took Vigabatrin for 2 years and we haven't noticed any issues with his vision at all.

Yes, at first after diagnosis and I realized it was a seizure he was having it was terrifying. We put together a good seizure management plan with our neuro with a protocol for emergency meds which gave us more confidence.

For us we had to watch our daughter have full tonic & clonic seizures at birth, so in comparison IS seemed so "harmless". But they are very scary because you start analyzing every little twitch and move trying to figure out what is what.

Thanks for sharing your experiences

It is!

Great question! I was wondering this as well.

Our neurologist told us that in her experience children that have IS without the hypps have a more favorable outcome. This is not your experience then?