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ESES or CSWS

Epilepsy & Seizures | Last Active: Jun 6 2:04am | Replies (10)

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@happyccl8

My son age 11 is on Clobazam, ivig infusions and amantadine and Levocarnitine, and Zyrtec Plus rescue meds midazolam, nyzilam and the rectal meds. He has 14 specialists as well as functional medicine doctors with a bunch of supplements. He reacts badly to adhd meds with more seizures and tics

We use So Happy To Learn (turning point for us-other families with eses have found this program amazing) and Equipping Minds to help with cognitive rehab. Someone suggested NAPA Pediatric Rehab.

He has ot, pt, DHH, speech and resource- medical insurance provided and school provided.

He is fully on independent study/ homeschooled.

While Applying the So Happy To Learn methodology, we use Right start math, Rooted in Language Pinwheels, Moving Beyond the Page, and Teach Town . These are mostly all paid for by our independent study charter school.

Starfall and Prodigy Math are free.

In California we have IHSS, protective supervision and self determination project and CSS.

I am currently trying to find a local house call doctor so he doesn’t need to be exposed to ers and urgent cares when sick with minor things.

We have a safety plan and he has a safety room which is my walk in closet only with Mattress, pillows and stuff animals. We have a gymnastics Mat to use as a shield when he is combative and use it to walk him over to his safety room. When dysregulated we don’t make eye contact, we look down and say “he is safe. We are here if he needs us” and sit by him outside of his safety room which doesn’t have a door. We have a code word to tell others in the house to block all exits, grab rescue meds (which can be used to settle him before call 911) We are rarely alone with him. He always has two people with him. Husband and self. Me and respite caregivers, me and his brother etc We provide food, water, ice packs when dysregulated, just place on ground near him while we sit near by.

We have a safety program through regional center to call for back up if needed.

Best I can do until I know more ..

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Replies to "My son age 11 is on Clobazam, ivig infusions and amantadine and Levocarnitine, and Zyrtec Plus..."

Your son is verbal? And does he continue to have eses on eeg? Clinical seizures?
How do you manage to have 2 ppl with him at all times? I have IHSS, too. My son used to be on ivig, and now just Clobezam and Epidiolex. And we have regional center and CCS. Haven’t set up Self Determination yet. My son is also autistic as well as ADHD, OCD, TD, and has chronic urticaria. Lots of behavior meds and urticaria meds. Getting G-tube this summer.