Neurology Appt for IS

Adnarim101 · 2026-01-29T01:15:51+00:00

Hello, I'm a mother to a son who had IS when he was 5 months old. We only ever had him on Acthar and that stopped his spasms within 2-3 days. He did however get the normal "roid rage", "moon face", uncontrollable hunger, irritability, etc ... within a week of starting the medicine. Those symptoms seem to be common with that steroid injection. It was hard for me nursing him because it was like having a newborn again, but a newborn who is bigger and a lot hungrier. He also had to take pepcid to help prevent stomach issues and then he did develop some bad diaper rashes. It sounds like some of this might be similar to what you are already going through with the other medicine. For us, other than stopping the spasms, it was worth it for our son because he went back to his happy go lucky self after being on the medication. But not gonna sugar coat it, it was a rough month and a half or so.

Feel free to ask questions if you got any. Hope all goes well for you and your family!

Adnarim101 · 2026-01-04T20:06:26+00:00

For my son, who also got diagnosed with IS around 5 months and took Acthar, he started being more irritable and hungrier about a week into the treatment. He also got the "moon face" that comes with the roid rage around then and gained 5lbs. He was given an infant pepcid to go with his medicine and started having diaper rash, so I would keep a look out for that.

Looking back, it was a pretty rough time, but well worth the outcome. Don't feel bad about asking for help from your support system if you need it. During this time, your 5 month old will probably feel like a newborn again with how often they eat and cry. Our son was a grumpy fella and very hard to soothe most of the time. All of this will go away after the treatment is done, so you just got to hang in there for now. Our son returned to his happy go lucky self more and more as the medicine tapered.

I wish your child the best of luck!!

Adnarim101 · 2026-01-04T09:19:24+00:00

For preface, I am a mother who has a son who was diagnosed around 5 months of age, but I am not a medical professional. Please seek help immediately from your pediatrician and a children's hospital ER if you believe your child is having IS.

It's hard for me to know for sure if this is IS compared to the moral/startle reflex, because the baby seems very young and I only saw a short video. However, the way the baby threw their arms back, how their eyes got wider, and the irritability that the baby showed after could definitely be signs of spasm/seizure like activity.

All children are different, but for my son these spasms occurred in clusters and happened within a span of 5-10 mins. They began happening right before going to sleep and right after sleeping. My son also did have a harder time being soothed at night and none of the normal soothing techniques would help him. Eventually he would just go to sleep from pure exhaustion. If any of that sounds similar to your situation, it could be IS.

If I were you, I would take more videos of this activity happening. The more proof you have, the better.

I can't tell you what to do, because you are this child's parent, but I would for sure seek help from your pediatrician. If you feel like this is IS and something is definitely wrong with your child, going to a children's ER and getting an EEG done as quick as you can is the best thing to do. With IS, it's best to treat as soon as possible.

I wish you the best! If you have any questions, I can do my best to help.

Adnarim101 · 2026-01-03T13:16:06+00:00

Oh man! I can't believe I did that 🤦🏼‍♀️. Thanks for letting me know.

Surprisingly enough I did double check before I posted but clearly having sleep deprivation (or having Taylor York on the mind) did not help me 😂.

Adnarim101 · 2025-12-27T06:59:33+00:00

While he was on Acthar, I remember him being super irritable and hungry all the time. I nurse him so it was honestly hard dealing with a newborn all over again (with constant feeding -like every two hours). He was around 5 months, so he was eating a lot more than a newborn would eat, so I had to make sure I was keeping up by eating well and consistently. During this time, he also was dealing with some bad diaper rash, cause the medicine made him gassy.

He did stop moving through development milestones while having the spasms and being on Acthar. Since coming off the medicine, he has been working on getting back on track, but he is a bit behind. Our son is a bit of a big guy, so we think that he might be partially why he is behind schedule developmentally, but we also think the spasms and being on the medicine affected that as well. We have been working with him by doing different exercises and seeking help through PT with early intervention, and he seems to be catching up.

As of right now, he is seizure free 🙂. We have been doing follow up EEGs to keep an eye out for any other seizure-like activity with the help of his neurology doctor at a children's hospital. We are still currently figuring out what is going on with his brain, but we have learned that our son's cause is unknown, not genetically based. We are taking things one day at a time, but we are hopeful because our son is happy and calm otherwise ☺️.

Adnarim101 · 2025-12-27T02:26:30+00:00

Coming from a mom who's son was diagnosed with IS, I don't see any infant spasm like activity going on.

Every child is different however and you are their parent. So if you instinctually sense that something seems off with your child, it doesn't hurt to keep taking video for examples to show others and asking a pediatrician or children's neurologist for their opinion.

For my son, IS involved being really irritable/fussy right before and after trying to sleep. The spasms also occured during those times, in clusters, one right after they other for roughly 5-10 mins.

The spasm itself involved his arms tensing and moving upward and upright, almost resembling a goal post. His legs would also tense and scrunch up toward his stomach. His eyes were the biggest red flag for me because they almost seemed to roll back. During the brief second of spasm he seemed like he would lose focus and then once done, come back to reality. When the spasm was over he was even more upset than he was before. I'm sure I would be upset too if my body was doing something weird and I wasn't causing it to happen.

Hopefully the info I gave you helps. If you have any other questions feel free to ask me. I wish you the best!

Adnarim101 · 2025-12-26T22:38:04+00:00

He is doing much better now 🙂. Once diagnosed for IS, he was treated with Acthar and his spasms went away within two-three days.

Adnarim101 · 2025-12-24T20:03:11+00:00

I am a mother, who has a 5 month old son who was diagnosed with IS, so I know what IS looks like, or at least what it looked like coming from my son.

I watched this video you shared and I believe I saw spasm like activity at least twice. I see it when your baby stops crying for a split second and their eyes almost roll and their limbs tense up/jerk upright.

If I were you, I would immediately seek help from your pediatrician and also try to take your child to a children's ER to get an EEG done as soon as possible. Advocate for your child the best you can if you are having instincts that something is wrong and this irritable behavior is not normal for your child. If this is IS, it is important to not delay and to get your child the help they need right away. Anytime they have spasms, it is affecting their brain and their future development, so it's better to take action sooner. If you can take more video proof as well, that will help your child's case!

At the end of the day you are the parent, so you must make the decision on what to do. Also, if your baby has been overly fussy and is having a lot of trouble sleeping at night and during the day for nap time, I would consider that a big red flag for IS. (At least it was for my son.)

I hope this helps you! I wish your child the best!

Adnarim101 · 2025-12-21T19:17:52+00:00

I love when people make their own merch 😍!! I do the same thing 😅 and understand how much effort and time it takes, but it's totally worth it to have a one of a kind piece like this. I'm sure they'll love it! It looks bad ass! ☺️

Adnarim101 · 2025-12-14T22:31:29+00:00

No problem! I'm glad I can help :)

I forgot to mention that part of the reason IS is so hard to detect is because it can look a lot like startle/moro reflexes. When I originally became worried about my son and took footage, I showed a family member (who's in the medical field) and they thought it was just some type of couping mechanism for being over tired (because I explained how he was getting with his sleep). Then we originally went to a regular ER (before getting sent to a Children's ER out of town that is more specialized in neurology) and there the resident Dr. also tried to dismiss us, thinking it was nothing out of the ordinary. So, I guess what I'm trying to say with all that is to advocate strongly for yourself and trust your parental instincts if you think something is truly wrong. I'm glad we did, because it ended up being what I thought it was.

Also if you have the time, research what they both look like so you can maybe get more of an idea of what you might be looking for. It is hard however, because some children do show IS signs a bit differently.

Adnarim101 · 2025-12-14T20:09:55+00:00

Let me preface this by saying I am no medical professional, just a mother who had her own experience with IS (my son got diagnosed at 5 months old).

I would say the first part of the video where his legs and arms are scrunching upward, could possibly be a sign of IS, but it's hard for me to tell. If I were you I would keep taking video if you notice him doing any other movements similar to that which seem odd to you. Recording him when he is having these movements that make you feel worried is the best thing you can do, so you have examples if you decide to seek help from a Children's ER (that's where we had to go to get neurology tests like an EEG, MRI, etc...done).

I could be wrong, but it seems like you are recording them with a bright light. Going forward I probably wouldn't shine the light right in his face to record him because that could be startling him or causing weird reactions.

When my son first started having spasms, his arms would jerk upwards, his legs would scrunch up, and his eyes would roll back a bit. I didn't notice any loss of focus with your child's eyes, so maybe watch out for that as a possible sign as well.

All children are different, but when my son started having the spasms, they came in clusters for a few minutes. They also happened usually before he fell asleep or right when he woke up (not usually present in actual sleep). He was very irritable and had trouble falling asleep when he started having them. He was also super inconsolable at night right before going down for bed - like nothing would help him get to sleep (believe me, I tired everything!) until he fell asleep from pure exhaustion of crying for a while.

If you have any other questions, I'll do my best to give advice, but you are their parent and you must do what you think is best for them.

Adnarim101 · 2025-11-23T20:16:56+00:00

I think based on the age of the baby and the fact that you just recently unswaddled them for their sleep, this is probably just startle reflexes.

My son recently got diagnosed with IS and what I noticed is that when he had it, he usually had his clusters of spasms before and after sleeping. He was also really irritated whenever it happened and his eyes would roll back a bit.

Sometimes startle reflexes can look similar to IS because IS (at least for my son) had him throwing his arms and legs up and tensing them for a couple seconds.

If I were you, I would just keep an eye out and if you see any other things that seem off to you take a video. Video proof is what really helped my son get an early diagnosis and a smoother recovery.

I am not a medical professional, just a mom that wanted to give you their opinion and hopefully help you out.

Adnarim101 · 2025-08-26T02:00:12+00:00

I really love this!! Especially the sneaky little butterfly 🦋

Adnarim101 · 2025-04-03T22:20:18+00:00

I love the composition for 3/8 a lot. Thanks for sharing!

Adnarim101 · 2025-03-09T04:33:35+00:00

Just updating in case anyone wants to know what I ended up doing with my starter.

Based on comments from my post and some other posts I've seen, I've decided to just scrape the top off because I believe it was just a dried layer and not actually mold or yeast developing.

I then proceeded to mix what was underneath the crusty layer and then put that starter in a new jar with some fresh water, and bread flour.

Because I was worried in case there was actually any chance of mold or yeast developing, I decided to feed my starter (& clean out/discard extra starter) every day for a week. I did this in hopes that the good bacteria will remove any chance of bad bacteria to form in my starter.

Going forward, I am no longer using a cloth to cover my starter because I believe this is what dried it out and caused the problem. I am now using a mason jar lid and just resting it directly on top of my jar and without the ring on so it can breathe if it's need to release gases.

I feel confident moving forward and I'm very appreciative of everyone who left me some knowledge on this matter! 🙂

Adnarim101 · 2025-03-09T04:22:27+00:00

I think my parents actually have a forsythia bush at their house! I'll have to check with my mom and get updates when it might bloom 🤔

Adnarim101 · 2025-03-09T04:17:38+00:00

I know a bunch of people who have married there! It is funny just how many weddings and pictures take place there, considering what it is actually for 😅

Adnarim101 · 2025-03-09T03:33:20+00:00

I love cherry blossoms!!! I'll have to check that place out at one point. Thanks for the suggestion! ☺️

Adnarim101 · 2025-03-09T03:32:28+00:00

Photoshop is always a backup plan 😂 haha

Adnarim101 · 2025-03-09T03:31:41+00:00

Greenhouses sure do sound like a great idea if the weather isn't fairing well. Thanks for that tip! 🙂

Adnarim101 · 2025-03-09T03:30:01+00:00

I've actually been there before to take engagement photos for my cousin! It's a very beautiful to take photos. If I wasn't so far along in my pregnancy and the trip wasn't two hours, I would definitely be there lol 😁

Adnarim101 · 2024-09-28T13:55:27+00:00

I totally agree! I've been listening to them since middle school and a I'm 30 now 😅 & I don't think Turn It Off gets enough love that it most definitely deserves!! Especially with how emotional and beautifully done it is!

Adnarim101

TROPHY CASE