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ESES or CSWS
Has anyone have child diagnosed with continuing spike waves in sleep or electrical status epileptics during slow wave sleep? And how they are being treated? My son went on steroids for 6 months and it has helped. EEG looks better. Behavior got better. But now that we are weaning off and almost done we notice the impulsive behavior etc is starting to come back and it did go away for a few months. Last EEG still looked improved. Not sure what could be happening as to why the symptoms are coming back but EEG not as crazy as it was in the beginning. Anyone else have this. Could there be something more going on ?
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Yes my son has this diagnosis.
Yes and my son is also 11. My son is nonverbal and does not have tachycardia, but he does fall suddenly quite a lot like you described and we don’t know why. His eses resolved, but his regressions did not resolve. He has 2 genetic mutations that don’t seem to be related. Idk what to do next for him.
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1 ReactionOh and my son’s lack of impulse control has always been off the hook. Behavior meds do help though.
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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3 ReactionsI forgot we have Neureka to monitor him at nights. Oxygen heart rate and movements. Tracks his quality of sleep.
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1 ReactionYour 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.
Are there 3 of us here with 11 yo boys needing second opinions for dee-swas after eses has resolved? Kinda amazing.
Can u tell me why he’s on Zyrtec? Mine is too, for chronic urticaria. He also has chronic sinus congestion, without infections. He’s on a few antihistamines and nasal sprays. Formerly also had chronic vomiting before we raised his Cyproheptadine dosage.
Chronic uticaris too
Verbal yes.
Articulation issues and issues with sentence order and word choice. But you get the gist of what he is trying to say 95 % of the time.
Ucsf says eses in remission, eeg is quiet ish, some spikes not a tremendous amount. Not like every sec or every 15 sec runs like before
I don’t see much anymore - just once a month episodes.
Tricky to have two ppl with him: husband and self , self and respite caregiver, self and his brother
Just got referred to CSS by his endocrinologist
Self determination project - pay providers $25-$30 an hour or more. You get quality committed caregivers that way.
Amantadine, Clobazam, Levocarnitine, zyrtec and lots of supps only now daily.
SBI protect is amazing for his SIBO. Beta glucans for his immune system - rarely gets sick considering he has hypogammaglobulinemia and iga deficiency and downtrending wbc
He does take a mitochondrial cocktail.
Grateful my son is mobile, verbal and does not require tubes to breathe, poop, pee or eat at this point. His neuro is also thrilled b/c he said his past eegs were so ugly that it was crazy that he was doing as well as he was doing
We did a lot of ASL and used SIMCOM and hired a deaf babysitter and had deaf renters so give him full access to language when he was completely nonverbal. He learned body language and how to read it. And used his body to kind of act things out. Think Curious George. Rough times I remember