Hi @minajo
I had a mild skin rash with Lamictal, but nothing serious. My major problem with Lamictal was sleep, I got severe insomnia with this medication which was killing me.
Hope Lamictal works for your daughter. Among the medications AEDs I have tried (Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat), it was the one that gave me the least side effects. Every person reacts differently. What has not worked for me, might work for others.
Good luck!
Chris (Santosha)

I've been on Lamictal for three years. My understanding is that rashes from Johnson Stevens Syndrome will show up in the first three months after starting the drug, and it's pretty rare. If you notice "any" rashes during that timeframe, report them to the doctor immediately. I didn't get Johnson Stevens syndrome, but I had several rashes. They varied a lot, and were in different parts of my body. I wasn't completely rash free until this last October. I reported each new one to my doctors (PCP and Neuro) they both told me that they had nothing to do with the medication. As @santosha said, "Every person reacts differently." Side effects vary. My rashes were harmless though definitely from Lamictal. My point is that, your daughter may get rashes from the med, and it's important to report them, but it doesn't mean it's serious. Other than some brain fog, and what I call "brain glitches", I've handled the drug reasonably well, and it's been effective.
Side note: The "brain glitches" are hard to explain, and I don't know if anyone else gets them. Other than being a bit awkward when having a conversation, they don't worry me.

@minajo
Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope the doctor also explained it’s extremely rare especially while taking Lamictal.
Did your doctor also explain there is a genetic test to see if your at an increased risk of developing SJS? I'd definitely recommend that test if from certain Southeast Asia.
Personally, I would not hesitate taking Lamictal but it may help if you titrate more slowly to help reduce any side effects. I figured the benefits far outweigh the risks of the many seizure meds known to possibly cause SJS that I have been on over the 57 years I've had Epilepsy, not to mention all the other types of medications known to have a relationship with SJS as I imagine you have.
Take care,
Jake

Hi @minajo
In those situations of hard decisions and different opinions, I believe it is always worthwhile to check for a second opinion or even a third one. In 2021, I was being prepared for a LITT surgery for my epilepsy when I decided to check for a second opinion from a neurosurgeon, who was totally against it, as this surgery would bring me a great loss of memory and would not make me free of AEDs (anti-convulsant medication). I have refractory epilepsy and AEDs did not work for me, either because I could not tolerate them or because they worsened my seizures. Checking for a second opinion was the wisest thing to do at this time I was facing a hard decision.
Before taking Lamictal, I was already having some sleep issues, but this medication has worsened my sleep much. And we know how important sleep is to control seizures. While on Lamictal I was having just naps. What helped me much was the practice of yoga nidra many times during the day, a practice which I kept since then with app practices and lessons. 30 minutes of yoga nidra can correspond to up to 3 hours of deep sleep. The app I use on my cell phone and enjoy much is called Insight Timer. See if this is possible for a person who has autism and may help your daughter.
I also truly hope you find the best treatment for your daughter. That your mind be illuminated in those moments of hard decisions.
Chris (Santosha)

Sorry @minajo, I forgot to add links with some information on the practice of yoga nidra.
https://www.dailyom.com/journal/your-brain-on-yoga-nidra-and-why-you-need-this-powerful-yoga-practice-in-your-life/?aff=910&ad=1&utm_source=google&utm_medium=ppc&utm_campaign=PerformanceMaxMeditation&acct=9358138875&gad_source=1&gclid=CjwKCAiA2pyuBhBKEiwApLaIOyABin15IjK4aMrSsiwk5K9OCJzm5pbXhjP_1dswlqWGO0exCZgOthoCp6EQAvD_BwE
https://www.biharyoga.net/yoga-nidra.php
Chris (Santosha)

Hi @hopefullibrarian
Great to know that, it made me smile.
It is best to practice it in the morning or early in the afternoon.
Have a nice evening!
Chris
PS: I have sent you a private message

Hi @hopefullibrarian
Thank you so much for sharing your experience of yoga nidra with us. This practice of yoga nidra could help so many others with anxiety and sleep issues. And it is so simple to practice it, you just need to lie down, close your eyes, and hear what is being said in this practice.
I use mostly the free version of the app Insight Timer. But you have also free practices of yoga nidra on YouTube. In this case, I recommend looking for practices according to the Bihar School of Yoga and/or Swami Satyananda Saraswasti.
Wishing you all still a nice weekend!
Chris (Santosha)

I have been taking a medication, Lamictal (lamotrigine), for about 20 years. On occasion, I have forgotten my evening dosage of 400mg. I then take it in the morning, and sometimes the next dosage too soon. Thus accidentally giving myself too much of the medication. This always gives me a small rash. This has happened more often lately, so I spoke with a new doctor about titrating down. The recommendation is to go from 400mg to 350mg. Two days after starting the new dosage I got a rash on my arm, after about 12-hours the other arm. Each day the rash grew until both lower arms and calves were covered. My new doctor was out so I went to an urgent care appointment. They had be go back up to the 400mg. Within two days the rash started to recede. I asked the pharmacist about it and he suggested maybe we should titrate down slower. My new doctor finally got back to me and said to wait until the rash went away and then try the 350mg again, and after two weeks jump to 300mg. I feel like this is too fast, but I cannot find anything online about what to do when you have a reaction to lowering your medication. If it matters, I take this drug for my mental health, not seizures.

So my question is, has anyone had a reaction to lowering their dosage to a medication and how was it treated? This is a medication that you are not supposed to just stop.