← Return to ESES or CSWS

Discussion

ESES or CSWS

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

Comment receiving replies
@ckc45

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.

Jump to this post


Replies to "Your son is verbal? And does he continue to have eses on eeg? Clinical seizures? How..."

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