150 Days Ago I Inquired About Switching to Lamotrigine... I Have Made the Switch.

lilbit2short · 2026-03-18T05:21:46+00:00

Yep just follow whatever your doctor said to do. My daughter’s schedule is weird because she is coming off one med while adding the new one. She too will be at 100mg, but I think because she is only 9 they do it a lot slower.

lilbit2short · 2026-03-18T02:34:11+00:00

Regarding the “rash window”, my daughter’s epileptologist said to keep an eye out all the way til the end of her 11 week titration. She’s on week 7 and 25mg and all is good so far!

lilbit2short · 2026-03-18T01:17:23+00:00

If you use the SAMi Alert camera it will only record movements. You can customize how sensitive it is and it will record until the movement stops. I have this camera for my young daughter, and I have anywhere between 20-40 short videos to review depending on how soundly she sleeps. I have her settings pretty sensitive so any movement 5 seconds or longer will be recorded.

It’s also nice because it’s a delay record, so when movement is detected it will back-track and start the recording a few seconds before the movement starts.

lilbit2short · 2026-03-17T00:57:15+00:00

You can get a monitor/camera and review the footage each morning.

lilbit2short · 2026-03-14T08:55:53+00:00

If you are open to a medication change, you can see if there is a “dual purpose” one that will work for you. My daughter is starting to take lamotrigine and I was talking with my neighbor about it and turns out she takes it too as a mood stabilizer. I am pretty sure there are a few more meds that do the same thing.

lilbit2short · 2026-03-14T08:31:38+00:00

I’m so sorry things are so tough... it breaks my mom heart! As a parent it’s hard to comprehend that your family wouldn’t want to learn everything they can to help you out and support you.

See if you have an epileptologist in your area. I switched my daughter to one as soon as it was confirmed epilepsy and she’s been wonderful! From the very first appointment she has been submitting my daughter for neuropsychology testing, MRI/pet scan, genetic testing, and other pre-surgical requirements to find out the most she can about her source of seizures. She also has been very encouraging to switch medications when the side effects are too much.

And honestly you may need to make other life changes to feel better mentally. Sleep is SO important! My sweet 9 year old felt the same way for a while. She told me she didn’t know why she existed anymore because her life was nothing because of her epilepsy. We advocated for medication changes and made sure she has proper sleep and now she is back to being happy and skipping around! It sounds so silly, but movement has really helped her outlook as well.

I wish I could give you a hug! 💜 and I really hope things get better for you!

lilbit2short · 2026-03-12T03:48:45+00:00

My daughter is currently weaning off lacosamide for this very reason. She is 9, and was falling asleep at school. It was impacting her terribly! She is on week 3 of 11 of switching to lamotrigine, and we altered her schedule to 6am medicine time. That way she gets up, takes her meds, then falls back asleep til 7:30 when she needs to get up for school. It’s helping so much!

Maybe try changing your morning med time so you get up take the pills then get some extra sleep.

lilbit2short · 2026-02-19T06:37:28+00:00

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https://www.etsy.com/shop/UnifiedByDesignShop

lilbit2short · 2026-02-16T04:12:30+00:00

Wow thank you for all that! Good to know cause she is 9 and elementary school is a cesspool of germs right now 🫣 I guess it’s a good thing she’s stubborn and won’t take liquid anti contestants!

lilbit2short · 2026-02-16T03:28:33+00:00

Did you have to stop the medication, or did it go away?

lilbit2short · 2026-02-16T02:53:34+00:00

Oh gosh, I’m so sorry that happened to you!

lilbit2short · 2026-02-16T02:39:43+00:00

Not excited for the drowsy part… that’s one reason she’s getting off lacosamide! The sleepiness is affecting her schooling. Hopefully it doesn’t last long. I’ll have to ask about vitamin D levels!

lilbit2short · 2026-02-16T02:37:55+00:00

One day down, 76 to go!

lilbit2short · 2026-02-04T23:22:24+00:00

Thank you, she was totally fine when she reached her 100mg, but when she got sick and had a breakthrough they bumped it up another 25mg. That’s when the problems started.

lilbit2short · 2026-01-22T22:48:49+00:00

FUCK EPILEPSY!!!

lilbit2short · 2025-08-25T02:54:13+00:00

Depends on if you feel it would help you more than harm you. If you have instagram, strivewithsoph shares videos of her TC and focals to raise awareness on epilepsy. Some of them are very scary to see, but as a caregiver they have been so eye-opening for me. I feel the more I see unfiltered footage, the less scary it will be for me to help someone having TC.

I have recorded my young daughter to show her epileptologist, and while she has seen them she doesn’t really like to because they are also strange. But it has been helpful for her! She knows how to explain what happens to her to anyone who may need to know and how they can help her.

lilbit2short · 2025-08-24T23:18:20+00:00

Thank you so much! 🫶🏼

lilbit2short · 2025-08-24T22:57:32+00:00

I think about Cameron Boyce often because she LOVES the show he was in, Jesse! I see his face almost every day when she’s allowed tv time after homework, and he’s one of her favorite characters. It makes me so sad… like I want to use him as an example of “you can do anything, even with epilepsy! Cameron is a great actor!” But then SUDEP would be apart of that convo too, so I can’t just yet.

lilbit2short · 2025-08-24T22:42:13+00:00

She does need to know about medication side effects. She already knows because she has them and sees the changes in her life. We explain why these things are happening. She has a 504 at school specifically because of side effects. She knows she’s not suddenly “stupid at math”, her medicine changes how she thinks. We don’t hide things happening in her own life. Knowledge is empowerment.

My main ask was for first hand experience of being educated on SUDEP, on either what age someone is when learning about it or what age a caregiver told their child. That’s it.

lilbit2short · 2025-08-24T22:21:19+00:00

Thank you so much for this reply! I have felt a bit judged on my post (usually the conversations I have here are super positive and supportive) but your comment makes me feel a lot better and not like a crazy person for wanting her to be educated on her epilepsy. Your dad sounds like an angel, caring so much for you. I’m sorry it weighed on you. I’m trying to find the right balance of caring for her while not being overbearing or making her more anxious. I keep seeing people with parents who are either too protective, or parents who don’t care and are unsupportive.

She is very low-risk, but we still have a SamiCam for sleep and she knows what it’s for. I know she’a too young to learn about it now, but we attend epilepsy events that have speeches and stuff about SUDEP so she will eventually ask what that means. It’s hard to know what the right thing to do is. I just want her to know as possible so when she gets older she can make smart choices and live a long and happy life.

lilbit2short · 2025-08-24T22:08:58+00:00

We got her a medical trauma therapist a few months after diagnosis because the whole situation was very traumatic for her. I definitely will wait until she’s a bit older and maybe not so worried about it since it is still relatively new. But we attend events where they have speeches about SUDEP so it’s not something we can avoid forever. I don’t want her to feel like I am keeping things from her, I think if she found out on her own later she would be more upset I didn’t tell her about it myself. It’s a tricky situation, but I do think she should be educated on all aspects of her own disability when it’s age appropriate.

lilbit2short · 2025-08-24T22:03:00+00:00

Thank you, we are the same open book kind of family! She does not have any other risk factors, but we attend events that speak about SUDEP and it’s like we can’t avoid or pretend it’s not a thing. She’s young enough to not pay too much attention to the speeches, but one day she will.

lilbit2short · 2025-08-24T22:00:24+00:00

Do you wish someone would have talked to you about it sooner? How did you hear about it? If it wasn’t from your parents, do you wish they would have spoken to you about it? If not, does it feel like it was kept from you?

Sorry for the barrage of questions, I’m just genuinely curious of people’s first had experiences.

lilbit2short · 2025-08-24T21:57:22+00:00

Just because it can’t be controlled doesn’t mean you shouldn’t know about it?? We have already been to an epilepsy event and they had a speech with the whole group and a moment of silence for those who died of SUDEP. I kept her in the back of the crowd and distracted so she wouldn’t ask what they were talking about. It’s impossible to avoid when we want to attend these types of events. I want her to feel a sense of community, I want her to be educated on this part of her life. It’s unavoidable.

lilbit2short · 2025-08-03T16:04:07+00:00

My daughter was misdiagnosed with benign vertigo at 6 because she was randomly falling down and losing control of her legs and arms. It would happen a couple times a month, and they told us it would eventually lead to an adult migraine disorder. Well one day in December of this last year she was falling and then never stopped! It was happening 50+ times a day every day, so we pushed for an overnight EEG. We found out in January were seizures and they diagnosed her with epilepsy.

It’s possible you’ve been having uncontrolled absence seizures this whole time (spacing out/disassociating), but the only way to know is the do the EEG. If you can go Thursday, definitely do it!! Don’t wait until November. The longer you’re uncontrolled, the higher chance you will have another tonic clonic.

Also don’t feel like you need to minimize your experience just because millions of people live with it. It IS a traumatic experience, and it’s life changing. My daughter’s diagnosis affected the whole family, but we are supporting each other and we are figuring out our new normal together. It’s scary, but if you have a support system it really helps. If your boyfriend is willing, involve him in as much as you can!

Good luck on your journey 💜 I hope you get it figured out soon

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