HRT for daughter who is nonverbal autistic, epileptic?

It would seem that a consistent level of estrogen would be beneficial for both epilepsy and behavior. The slow drop in estrogen during perimenopause could affect both.
I have a 65 year old disabled sister (similar behavior to Down Syndrome) who WAS on oral contraceptives to prevent pregnancy (a sign of the times, now they use progestin).
My life experiences lead me to think that menopause, and perimenopause, would be difficult for an adult with autism. I’ve worked with children with autism and changes in their health can trigger unwanted behavior. Menopausal side effects would surely do the same. Depending on the type of seizure activity, high or low estrogen can cause problems. It seems that a consistent level of estrogen, perhaps low level, is most helpful.

Considering recent reviews of the safety of estrogen, if I were you, it is something I’d pursue with the doctor. Some doctors start estrogen during perimenopause. I’m not sure what the side effects would be of easing off progestin. Lots to consider. Bless you for all the years of care and love you’ve given your daughter!

There is an Autism group here on Mayo Clinic Connect. And I’m pretty sure there are adults with autism in the group. They may have menopause experience that would be helpful!

Best of luck as you work to figure this out!

Can anyone give me advice on purchasing OTC for vaginal atrophy? Hormones not an option. I have a seizure risk on lamotrigine ER 100mg daily. Seizure free 11 plus years. Tried vsginal hrt. No help. Tried intrarosa . No help. I use coconut oil primarily plus OTC moisturizers. Also use hydrocortisone cream and benadryl cream. I have IBS as well with constipation. Makes pain worse. I manage this with probiotic supplement prebiotic fiber docusate dietary change. It does help. Increased fiber too. No more milk. No more caffeine. Before I invest money in OTC supplements on Amazon - topical- please help with advice. My gut microbiome was part of all this so I improved it by prescriptions dose changes under medical supervision plus the dietary changes. I do have pelvic floor dysfunction had some therapy in the past not helpful and cost prohibitive I am leaning toward hyaluronic acid but all advice appreciated. The pain has become excruciating.

Also. Any pelvic floor exercises I can do myself? What about abdominal massage. Thank you. This condition is close to being impossible to get help with.

@triciaot Thank you!
We have cardio tomorrow to see if long qt is issue, then need neurologist input to see if Seroquel needs change
Then can ask PCP about doing estrogen, with epilepsy, cardiac issues( high, then low BP during abdominal surgery, long hospital stay)
We can't change but one thing at a time to know if it's working..
It's just a lot for someone with profound autism
Thank you for your excellent suggestions!

My nonverbal autistic, epileptic daughter has been on Lamictal XR for about two years , she's had sigmoidectomy, long recovery two years ago, and just turned 50,She has many behavioral issues, on Seroquel which after 10 years we just started reducing by 25 mg as her EKG was borderline,( seems Seroquel causes qt issues) pcp has had her on lowest dose progesterone for several years to stop periods( her personal care issues) but just started Estrace , lowest dose estrogen to try to avoid menopause issues , just started 4 days ago , then I read Lamictal and estrogen could affect seizure threshold
No reply from PCP or neurologist yet but I can't do another drug change with her seizure med( just got her off zonisamide two years ago)
She's so very complex now, really thought low dose estrogen could help her severe insomnia, maybe even bizarre behaviors
Just wondering if anyone has used Lamictal and hrt? Even getting labs done hard, Lamictal gets sent out too, takes over week for levels!
Thoughts greatly appreciated
Lisa's mom

@minajo
Estrogen breaks down Lamictal, similar to how Dilantin and other drugs accelerates the metabolism of Vitamin D.
Has the doctor recommend a higher dose or other changes?
The estrogen may cause a significant reduction in the Lamictal lowering the seizure threshold.
Are your daughter's seizures controlled?
Ask the doctor for a Lamictal level within 7-10 days.
Blessings to your daughter & family,
Jake

@minajo - hello! Since you were talking about HRT and lamotrigine (lamictal), I moved your post here to where you were discussing a very similar topic previously:

- HRT for daughter who is nonverbal autistic, epileptic? https://connect.mayoclinic.org/discussion/hrt-for-nonverbal-autistic-epileptic/

Thank you, her seizures have been fairly well controlled, no drop seizures for several months, her last level was good, done two weeks before Estrace 0. 5mg( lowest)begun, the pill as she can take patches off and gel isn't covered by Medicare, her PCP said do another level in a month or see what neurologist says.. Hard getting answers from her.. also working on lowering Seroquel so I can't be switching AED right now, also just tweaked thyroid med.. being nonverbal, autistic very hard for her to handle side effects
PCP did order whole breast scan as we couldn't get mammogram done
Trying to help this daughter, went thru colon surgery 2024,in hospital 49 days, 4 different admissions so lots of drugs, anesthesia etc
She's having hard time, has 2:1 staff in a small 6 bed residential carehome where she's been many years and staff good with behaviors, tho some of it from drugs I know.. pain,
I'm at all medical appts,have her at my home sometimes tho husband and I seniors..
Thank you all for any input

Daughter, 50, nonverbal profound autism, epileptic, lamoctil xr, for that, Seroquel 150 bid for several years, buspar 40 mg bid, been on progesterone for years but just started Estrace 0.5 mg 6 weeks ago
NEVER have I seen my daughter eat so voraciously, I have to take plate away, make sure she chews, then give it back with only small amount on plate, cut up tiny pieces, make sure she sips water, tho she's dropping weight,
Her behavior is very " edgy" stressed, tears up books etc, tosses things, removes clothing and scratches herself
So VERY BIZARRE, I'm used to autistic behavior but should I stop the estrogen? Wean her off? Increase dose? So sad just watching her, how she'll get thru menopause ??
Thanks

Such unexpected behaviours do happen. I believe her neurologist would have made a strong, or VERY strong emphasis, to tell her to let her know if any out of the blue behaviour(s) is/are to happen. And do keep a note book to note the time and what EXACTLY she’s doing them, but don’t associate any of them together. Let the neurologist do the linking if anything. And also take note on 1-10, how will you rank any of the behaviour? Don’t stop any drug without first consulting. It’ll be scary at first but she’ll hopefully get better once the medication works better. It can take 2-3 months to work for neurological ones. Just make a consultation date with the specialist as fast as you can. Stay calm in the meantime.

Cheers,
Louis