Please help....my daughter has menstrual psychosis and it is complicated by autism.
I hope someone can help us.
My daughter just turned 16. She has autism. She is mostly non-verbal, but can tell us what she wants as far as eating, where to go, etc. She is pretty limited in her ability to communicate though.
We began having behavioral problems when she was 5. At that time, her anxiety exploded and she began pulling her hair out. By the time she was literally half bald, our pediatric neurologist put her on a low dose of Prozac and things got a little better, but behavior problems continued.
Since she turned 9 years old, she began having these epic meltdowns where she becomes very aggressive, breaks things and hurts herself by biting herself all over. At that time, I made no connection to hormones - and these rages happened once or twice a month. We changed schools and tried to manage these issues behaviorally... although, trying to reason with and use behavioral strategies with a raging maniac (for lack of a better term) has always proven pretty fruitless.
Over the years, these issues continued, and remained more occasional. Even with journal tracking and multiple diet and supplement... and medication interventions... there was not a distinct pattern that could be drawn out. Knowing some of what I do now, I am sure there was probably a pattern that we missed. We worked with a naturopath doctor specializing in autism and did all the tests, diets and supplements recommended, but things remained pretty much the same. When things were Ok... she was a beautiful, sweet, loving angel.
Fast forward to the last year and a half...We have worked with some of the top autism doctors. Based on what was happening, our top doctor kept her on a low dose of Prozac and added in Trileptal as a mood stabilizer. It helped for a while, but as always, things got bad again. Finally, against what I wanted, we gave in and agreed to low dose Risperdal.... the same thing ... better for a while, then increase... and the vicious cycle continued until she started having bizarre dystonia and I was terrified she was showing signs of tardive dyskinesia. The doctor’s answer was to a add a Parkinson’s med to control the dystonia and grimacing. That was the last straw. We changed doctors and moved on to another renowned autism doctor and a slew of new med trials.
Well.... this post could go on forever, but this last year and a half has been hell on earth for our daughter and our family. The rages are at a level that is not to be believed. Some of the medications made our poor girl insane. Nothing helped. We figured out that she was having two good weeks and two horrendous weeks out of each month and started tying it to hormones.
In August of last year, I decided to wean her off all meds and go back to ground zero. At first, we were very hopeful, but we hit that two week marker and all hell broke loose again. My daughter mutilates herself by biting herself all over, she digs into her skin so that she is all cut up on her back and arms. She throws herself to the floor so hard, you can’t believe she doesn’t break her hips. Our house is destroyed with holes in the walls. She has ripped doors and cabinets from their hinges, destroyed furniture.... it is horrible.... and the saddest part is that she is truly this wonderful, sweet girl when not in the grips of these phases.
She is currently on no medications - except Xanax that we give her sometimes when we see the precursor stages of a rage coming... these often happen in the middle of the night.... but this is a band-aid that probably does more harm than good in some respects.... but it is for her protection more than anything - and it rarely works as it is.
Through a couple of wonderful Facebook groups, I learned a lot more about hormones and their potential impact. We began working with a new holistic practitioner in November. She is great. We started using bio identical progesterone to try to help and Vitex. We found out my daughter has a double MTHFR gene mutation. We tried a B complex which seemed to hurt more than help. Currently, my daughter is using bio-identical Progesterone cream 30 mg 2x per day - we were at 50 mg 2 x per day, but she seemed worse so we lowered it, Vitex 440 mg per day, Magnesium glycinate 400 mg p day, D3 5000 iu p day, Omega 3, Charlotte’s Web Every Day Plus CBD oil, and in desperation, we just started saw palmetto based on an article I read about androgens and PANDAS like issues.....her blood testosterone was on the high side of normal. She tested negative for PANDAS/PANS by the way.
Her rages started on day 26 of her cycle this month. They usually start on day 25 and last for a week, go away, return on days 6 to 12. Days 14 through 24, she is a dream... just wonderful. This month, for the first time, she didn’t get her period until day 32. She used to get it every 28 days before we started the progesterone - then it started coming on the 30th day. She has been a raging maniac since day 26 of her cycle this month. Today is day 2 of her cycle and she is normalizing again. I keep writing and calling our holistic practitioner - we are increasing her to an orally compounded progesterone of 100 mg. 1 x per day...and also adding a cream that contains estrogen and progesterone to apply during the parts of her cycle where estrogen would normally decrease for a typical woman...Is this a bad idea?? Those are the times when she goes berserk....so it seems logical that it may be tied to her estrogen decreasing???
I am sorry this is so long.... I am so sad.... so lost. ... and right now, things are worse than ever. We can’t find an answer to help this poor girl. She tested negative for PCOS, but our practitioner did feel differently based on her ultrasound results. In my opinion, she definitely has Menstrual Psychosis.
If anyone has any suggestions, I would greatly appreciate them. Thank you for taking the time to read this.