Have you gone from zonisamide to lamictal?

Well my decision to take my autistic, nonverbal , epileptic daughter from Zonisamide to Lamictal begins.. her abdominal distention, hospitalization, brought me back to original concern that 25# weight gain, ammonia, kidney values increased first began after Zonisamide initiated so only way to know is change
Question, from 300 to 200 to 150,100 finally to 50 .. dr will start Lamictal at 50 mg week.. then from 25-100 for 4 weeks till lab for Lamictal
Any ideas on this titration schedule?
She hasn't had seizure since 5/2022 on Dilantin..
Also her abdomen still distended.. dx at hospital discharge was bladder infection and fecal impaction, no gi visit yet, waiting!
Thanks

My 48 yr old daughter with autism/ epilepsy on Zonisamide for several months, began adding 2# monthly tho dr said not from frug? But she ended up hospitalized with extreme abdominal distention, megacolon and needed enemas, etc.. now on Lactulose and Colace which has helped get impaction cleared a lot but does the megacolon take a long time to shrink? Bein nonverbal is so difficult for her to express pain, discomfort but she was very traumatized from hospital stay so wondering about reversal of megacolon?
Thank you
Maureen Dolman

When Zonisamide titration from 300 down, to 250,then 200.. holding there until Lamictal reaches 100 target dose, then lab for level, can the Zonisamide be completely stopped if Lamictal level acceptable?.

My autistic 48 yr old daughter with epilepsy is titrating down on Zonisamide , was 300,now holding at 200 till Lamictal which has started at 25,now 50 reaches 100 then lab levels but her affect, behavior has changed to becoming very loud, eating rapidly, almost a manic state..Any suggestions? Thanks

My nonverbal daughter, autism and epilepsy is almost finished with Zonisamide titration which seems to have caused a fecal impaction leading to hospitalization .. now starting Lamictal, at 75 mg now , target dose 100 then blood level, she has very few seizures .. but she's very agitated, seems to have headaches as she points to head.. dr thinks 100 mg not enough? Im concerned as its for bipolar why she seems so "edgy", also slight bluish tinge to lips.. she's on Coreg for b/p.. i just hope as Zonisamide out of system the Lamictal will be okay AED for her ..any thoughts on Lamictal? Thank you

Hello! I take lamictal. I tried different meds before finding this one. It's the only one that has worked for me. All I can suggest is watch her after the other one has gone. It might be having an effect because it is leaving her system. Every med for seizures seems to have side effects and getting used to them or changing them can be very upsetting. I speak from experience. Just let your doctor know and ask questions. It helps having an idea about potential side effects and potential for the med to work. Best of luck! I hope this med works for her as well as it has for me.

Thank you! It's hard as my daughter is nonverbal autistic so when side effects happen her behavior changes.. she's supposed to get to 100 mg daily, been doing 25,then 50,then 75 mg every two weeks so still at 75 while other drug has two more weeks till stopped.. Dr wanted Lamictal at 200 but she hasn't had seizure for two years so hope if we get level okay at 100 we won't need higher dose.. She is very unmanageable at lab so even that is hard.
Might i ask what your dose is? What dose did you start at? Do you do labs often and how is your level?
Thank you so much!

Hi @minajo
I have tried Lamictal and among the 5 AEDs I have tried, this was the one I had the fewest side-effects. However, the insomnia I had with Lamictal forced my doctor to change this medication. I have been a very sensitive person to medications since childhood. I might not be a good example. With Lamictal, besides the insomnia, I had a skin rash in the first 2 months, but then it got better.
My doctor started with 25 mg and raised it to 100 mg, but this was a too high dosage for me that I could not tolerate, and so it was reduced to 50 mg.
All the best to you and your daughter
Chris (@santosha)
PS: I am nowadays on Epidiolex. Has the doctor of your daughter considered this option? There is another member of our group, whose son (he also has autism) could have his seizures stopped with Epidiolex. Epidiolex (made from medical cannabis - pure CBD) might also bring benefits to the autism of your daughter.

Hi to allMy daughter ( nonverbal, autism, 48)is almost finished with Zonisamide titration, 50 mg now for another week but having hard time with new Lamictal, at 100 now, her target dose till lab level done, but even tho she gets dose in am is having trouble sleeping, more so than usual which is common for autism but having behavior issues,Just wondering if it is just a matter of adjusting? Zonisamide caused severe constipation leading to impaction, hospital stay so had to come off.. thank you.. a frustrated mom!

Hello all.
My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she just finished titration off Zonisamide.. even her kidney values have gone back to normal, abdominal issues leading to impaction and hospitalization much better! I told epileptologist for months Zonisamide wrong bit she disagreed(:
So now Lamictal, went from 25-100 over 8 weeks, some issues with headaches, behavior, affect , but yesterday first blood serum at 2.9( normal 2.5-15)
So low end of normal, no seizures to date but only two weeks at 100 mg in morning.. Zonisamide was pm but now should we do Lamictal at night, maybe twice a day? its a XR but can cause insomnia..
She takes melatonin at night, also on Seroquel 150 a day and buspar 30 but sleep disorders common in autism .. forever with her but her mornings on Lamictal seems to !cause behavior, she's been doing little, bit lethargic so any opinions, advice appreciated as she is nonverbal so trying to figure her out! Thank you all!!