Intro- LO with Infantile Spasms

ErinE683

Hi ladies, 

I'm Erin, mom to Elise, a beautiful 7 month old girl. She's had developmental delays since about 3 months old, and hasn't met any milestones yet (unless you count teeth! ha!). We started EI for PT and OT about 6-8 weeks ago, and then three weeks ago were diagnosed with infantile spasms. Anyone have experience with this? It's a pretty rare seizure disorder. We're getting ready for discharge from our second hospital stay, after her first type of medication did not work. We're still digging into why she's having the delays and has gotten the spasms, and our next step is genetic testing. At this point the #1 goal is stopping the spasms, and then the #2 goal is trying to figure out what the underlying issue is. Most likely, Elise will have delays or mental/physical disabilities, but we're not sure to what extent at this point. That part really sucks, because it's hard to prepare for the future when we don't know what it will be like. I've pretty much stopped visiting my March 2014 BMB, but still chat with ladies from that board on our Facebook group. So... that's me, and here we are. I know there are huge varieties in the special needs our kids experience, but I thought I might start to hang out here a bit, getting to know you all

In non-baby news... we live in Chicago, love to cook and travel, and I currently SAH with Elise. We're in the city for now, and love it, but do plan to move to the burbs in the next year or so, once Elise is a bit more settled. 

Any chance anyone else has experienced IS?

kcisthebombdotcom

Welcome! My daughter did not have IS but has a seizure disorder. I hope you find a med that helps soon.

teralane

Hi! I am Tera and my now 7 month old has infantile spasms and hypotonia. We get an MRI done on Monday to see if there if we are able to pin point anything majorly wrong. We have started therapy to hopefully help her develop and reach a few milestones. I just want to see her smile again.

shunt1983

Have you had any testing done? Mine has a genetic mutation that will most likely cause seizures at some point. Its a deletion in chromosome that qas found doing a micro array. We got lucky had a neuro who has a background in genetics.

BeeOhVee

Hello everyone. My son was diagnosed with IS as well. He is currently 33 weeks old and is already on treatment. He has about a week and a half left to go before finishing and already his smile is back and is pretty much back to behaving like himself. As far as the cause we still don't know. The genetic test results are still not in and the MRI showed nothing abnormal. As far as developmental milestones go, he was just starting to sit on his own when he became symptomatic. But the meds made him super lethargic and he couldn’t sit on his own even if he wanted to. So now that the dosage has been lowered and he has more energy, we’re starting to see more interest in sitting, bouncing, etc.

AJKusek

Our daughter started having infantile spasms at 7 months also. After a MRI and genetic testing it was confirmed she has leighs syndrome. A type of mitochondrial disorder. She just turned 2 in October. We were able to control her infantile spasms and seizures with medication although she is severely developmentally delayed. Good luck to you and your family. It's so hard to watch your babies go through something you can't fix!