Also, OP, read studies. Go on pub med. you have questions and that’s totally understandable but this isn’t the place for answers about a rare condition like ESES. You need to trust a neurologist and read about the disease so you can gain some understanding.

Op, I recognize you from the epilepsy posts. Your child needs a neuropsych done asap for a baseline. And Op you have been told this numerous times and you’re not seeming to accept it, but taking medication for epilepsy is very different than for mental health in that you may die directly from epilepsy particularly seizures that occur in sleep and your child may well be having those in sleep even if you never see them if the brain is spiking continuously. You’re not just medicating to prevent regression. Neurologists are in agreement that if there are seizures or very abnormal eegs there must be medication because of the risks of not medicating. It’s not controversial in the field. It’s not like medicating for adhd. I think you are in denial and I think it’s time for you to seek therapy. You need to find a neurologist you understand and trust also. Go to Hopkins or Mayo or just another hospital.

Yes. My kids very high IQ masked that they weren’t seeing almost anything for 7 years.

If your child (or an adult) has a progressive neurodegenerative disease then yes, a high IQ can both mask symptoms and be somewhat protective in terms of the impact of the degeneration.

Absolute yes for dyslexia. Our child is gifted with dyslexia and it is a lot to unpack.

Sounds like you should proceed with the full neuropsychological testing to get more information. Good luck.

My kid was diag'ed ADHD in 2nd grade, Asperger's in 5th. Doc found dyslexia (first percentile in one particular measure) in 11th grade when we got "adult" testing for college. IQ tested out as in the high 120s in both 5th and 11th grade assessments. Managed to hide the dyslexia for a really long time.

(Dyslexia can present in a lot of different ways.)

I’m one of the dyslexia PP, and I misunderstood your question/situation. I do believe that the testing will give you information on your child’s learning needs, so I think it can be really helpful. But I have no experience with what you are experiencing, so can’t be very helpful. Is there a Facebook or other group for your child’s diagnosis? Folks who have been in your shoes might be better able to help.

You could mention the name of the disorder here to see if anyone has specific experience, or start a new thread with the name of the diagnosis in the title, and you might find someone to share their knowledge.

Best of luck!

I would follow the doctor's recommendation. There is likely a Facebook group connected to the rare diagnosis where you can learn what other parents have done and if there's a doctor who specializes in it whom you should see for a second opinion.

Ah, that's lightly different from what this forum usually discusses.

You're talking about a progressive neurodegenerative disease?

They definitely can, but an expert should know the difference.

Op here. My child is not flagged by school for academic part, but he has behavior problem due to his adhd diagnosis. I often hear from this forum that we treat kid symptoms not the diagnosis.

The new diagnosis is really rare, and they say that most likely it will cause cognitive regression & learning disability down the road even though we can't see those symptoms now. And, they want to put him on medication to control/prevent it from happening (even though there is a chance he may not be affected), well, that is why they want to do the neuropsych evaluation now and 1 year after to see if the medication works or not. The medication is for prevention, and of course it comes with some side effect.

It is like I have heart attack risk stage 1, I am on medication long term daily to prevent me having a heart attack one day. I have no symptoms of heart attack but bloodwork and lab report says there are, so they put me on medication.

my daughter's high IQ masked dyslexia until 4th grade.

My child has a high IQ (120 or so) and specific learning disabilities in reading, writing, and math. He fits under the general brain wiring type of classic dyslexia.

His K and 1st grade teachers flagged him for testing because of the discrepancy between his obvious smarts and tremendous difficulty learning to read.

He has had psycho-educational testing every 3-5 years to update his accommodation and learning plan. He is in high school now, and we'll be doing probably his last one this fall, to identify what is needed for SAT/ACT and any accommodations in college.

If school is recommending the testing I'd advice you to get it if you can, OP. It helps to know what problem, exactly, you are dealing with. Your kid is going to be the same kid, with the same strengths and weaknesses, after the test - you'll just understand their needs better. At least that was the case for us. Good luck!

High IQ and cognitive impairment are opposites. But a high IQ can definitely co-exist with (and mask) a specific learning disability and a neuropsych can definitely pick that up. Typically, neuropsychs are done every 3 years. Is the doctor concerned that the new diagnosis can cause regression? That could explain the suggestion for annual evaluations and the concern about cognitive disability despite current high IQ.

My child is going to get neuropsychological evaluation. He has a new diagnosis that subject to cognitive impairment & learning ability/progress. He is doing awesome academically (no need to try can get great grade), and I don't see any cognitive impairment or learning problem. He is a rising 1st grader, and I know that he has IQ. My question is can high IQ mask cognitive impairment & learning & learning ability/progress?

What does neuropsychological evaluation test on, and how long? It is ordered by pediatric specialist & he has a long history, so I believe that it will be covered by insurance. They say that they would want him to get tested now, and then to have him re-test one year after to compare the results. What are they looking for? How often does kid get tested on neuropsychological evaluation?