Please help....my daughter has menstrual psychosis and it is complicated by autism.

by Lisa
(New Jersey)

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.

Comments for Please help....my daughter has menstrual psychosis and it is complicated by autism.

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Feb 13, 2018
In response
by: Anonymous

I am so sorry to hear your struggles and your daughters. I know very little about autism but I do know something about progesterone therapy. It has saved my life.

From what you said about her being a dream day 14 on till right before her period I can only assume this is during ovulation, which is when we produce progesterone.. then it would be safe to assume that she should be using it everyday without stopping.

It will not stop her from having a period unless it's a very high dose and if she isn't going to be having children shouldn't be an issue? I take 100mg every day, some days I use more.

Giving her estrogen could possibly cause yeast infections if she doesn't need it. Just a thought. Maybe someone else will have greater insight.

Bless you

Feb 14, 2018
Please help....my daughter has menstrual psychosis and it is complicated by autism.
by: Joy

Hi Lisa

I can't imagine what you and your daughter must be going through. She certainly has been on a cocktail of drugs.

I am pleased that she is taking Vitamin D3 but what is her level? The optimal range is between 70-100ng/mL. There seems to be a link between autism and a vitamin D3 deficiency. Please visit the Vitamin D Council for more information on this - https://www.vitamindcouncil.org/news/.

Progesterone is a calming hormone it should help to calm your daughter a little but enough must be used and I do not believe that she is using enough. Usually between 100-200mg per day is needed, more if symptoms are severe. Your daughter reacted to the amount being used because it was aggravating her estrogen receptors. Any form of oral progesterone is no the best delivery method as 96% gets destroyed by the gut and liver. Progesterone therapy is also not an overnight fix, it takes time and patience.

The aim of progesterone therapy is to make progesterone the dominant hormone. By taking any kind of estrogen would defeat this. For this reason I do not agree with Vitex as it is estrogenic.

Her cycle is not regular, she should use a good organic progesterone cream such as Natpro every day until her cycle returns to normal and she feels stable. It is very difficult to use the cream while following a cycle if it is not regular. She would benefit greatly if used every day.

I do hope that things improve for your daughter. This must be very stressful for you too. Please read these pages as they will help you to understand how to use progesterone correctly.

How to use Progesterone Cream - https://www.progesteronetherapy.com/how-to-use-progesterone-cream

Estrogen Dominance - https://www.progesteronetherapy.com/estrogen-dominance

Vitamin D3 - http://www.progesterone-info.com/benefits-of-vitamin-d-cholecalciferol.html

Delivery Methods - http://www.progesterone-info.com/delivery-methods.html

Menstrual Cycle - http://www.progesterone-info.com/menstruation.html

Agression - https://www.progesteronetherapy.com/preventing-aggression.html#axzz1lCLGJQsy

Feb 14, 2018
Please help...
by: Anonymous

I am so very sorry to hear what you are going through. This must be terribly painful and frustrating for you and your daughter.

Please listen to what Joy has to say. It is good she is taking Vitamin D3. This is crucial for moods and the immune system. Also please NO added estrogens!! The is the last thing she needs.

I am going to go way out of a limb and suggest that you do not label her in any way, by which I mean, Autism or any of those other labels. I know that sounds bizarre to you, but what I mean is, there is a chemical imbalance going on which in my heart of hearts I believe can heal. Labels are labels. I hope she is not eating foods that are starches, ie. breads, gluten in general and sugars! More good fats such as coconut oil are known to have a positive effect on brain function! Avocados, organic olive oil, borage oil etc. should be added to her diet and eliminate all sugars and glutens. The more good fats the better. It should dominate the diet. More organic vegetables and some, not a lot, of fruits, because fruit contains fructose which can be problematic.

Magnesium is crucial!! B12 is also very important. An all round Cal/Magnesium supplement, such as Bone Renewal by the Pure Synergy Company is excellent. Their products are all food based and organic. And progesterone cream such as Natpro, not oral types of progesterone which do not get into the system well enough, in fact hardly at all. Another good cream is called ONA's progesterone.

I sincerely hope she gets better. I believe the human body can heal! And you yourself need these supplements to manage your own stress throughout this. I hope you are doing that! Progesterone is something I will take forever!

Feb 14, 2018
Thank you!!
by: Lisa

Thank you so much, ladies!! Your feedback is invaluable!!

Feb 15, 2018
Thank you, Joy!
by: Anonymous

Thank you so much, Joy.

I never heard that Vitex was estrogenic, so that is very good to know. I was giving her 100mg. of the bio-identical progesterone (compounded at a compounding pharmacy). She always seemed to have problems at that level....and insomnia as well....but, it it's a matter of adjustment time, I am willing to wait it out.

We were doing 50mg 2x per day. Do you agree with this or would you recommend all at once?

Prior to using the compounded cream, we were using Ona's natural progesterone cream 30%. I am going to look at the links you shared now.

Thank you so, so much for your response!

Feb 15, 2018
Thank you!
by: Anonymous

Dear Anonymous,

Thank you so much for your response. Her D levels were great. I actually sent all her testing and notes to work with my husband to copy so we can send them to a Neuro/Endocrinologist who has done studies on hormonally induced psychosis - so I don't have the test results in front of me, but I remember them being very good. I will double check it though!

Thank you for your input. It is very helpful!!

Feb 15, 2018
need advice
by: Lisa

Hi again, Joy...hoping you can help. As I write this, my daughter is so anxious, it is unbelievable. Non-stop high pitched whining/border line crying. She wears head phones for sound sensitivity and she keeps breaking them so they have to be put back together.

So far today, I stopped the Vitex. She took her D3 5000 iu and magnesium glycinate 200mg. I applied 50mg of the bio identical progesterone. As much as I like our holistic practitioner, I think she is at a loss as to the level of progesterone to give my daughter. So far, we have only done blood tests. We are going to do a saliva test, I am waiting for it to arrive in the mail.

My question is....where should we start? I gave her the 50mg. She is an absolute mess. Where she used to be better by this point in her cycle, it is now turning into a constant thing.

Feb 16, 2018
Need advice
by: Joy

Hi Lisa

Progesterone should be used no less than twice a day, morning and again at night. This will keep progesterone levels stable. Your daughter will experience estrogen dominance symptoms, this is something that she will have to adjust to, time and patience is needed. Using anything less than 100mg per day will aggravate her estrogen receptors. Things can get worse before they get better. I suggest upping her magnesium glycinate to 400mg. Make sure that her vit D3 level is at optimal range. Please also make sure that the compounded cream being used contains NO estrogen and or testosterone.

The late doctor Kittie Dalton used to administer 2,400mg of progesterone to her patience suffering from psychosis and severe PND. This really is something that you will need to experiment with to see what suits your daughter best. I am not suggesting that she will need this amount, but I felt that I should mention it to you.

Good luck. I wish that I could help you more and I do hope that progesterone will help her.

Feb 17, 2018
Update
by: Lisa

Hi All,
Thanks for taking the time to give your advice.

I guess I am answering several comments at once. Someone asked me to not use labels such as autism. Believe me, I don’t believe in labels and I have two children on the autism spectrum... but there is also no shame or stigma in putting a name that fails to ever explain the many complications of autism... and each individual on the spectrum could not be more different from one another. In my daughter’s case, her suspected hormonal balance is truly complicated by autism and her challenges with communication... and so much more.

As far as her supplements and diet. I have increased her magnesium to 400 mg now. I also added MK7 with the D3.... I have heard this is important for the D3 absorption. Hope you agree with this? Please let me know what you think.

Her diet is pretty good, not perfect. She eats high protein, wild caught fish, poultry, beef, pork, organic fruits and vegetables,. I use extra virgin olive oil, organic coconut oil and Kerry gold butter (only if she has a baked potato).... I know potatoes are not great. She does not eat a lot of starches or sweets. She is gluten free, she does have ice cream sometimes. I am trying to switch her to a coconut based ice cream. She only drinks Spring Water. As I said, not perfect, I know... but, hopefully not too bad?

Here is the bad and sad news. She had a seizure yesterday. It followed the preceding day where I bumped her up from 100 mg per day of the bio identical Progesterone cream to 200mg, split into 2 x 100mg doses am and pm.

This is only the second seizure she has ever had. She had one in June. At that time, she was on medication, she isn’t anymore, but I guessed that the new medication she was trialing was perhaps the culprit. Not sure if the bump up on the Progesterone was too much too fast... but sadly, that is what happened.

I would appreciate any thoughts on this.

Thanks so much, everyone.

Feb 18, 2018
please help...
by: Anonymous

I am so sorry if my comment about labels was misinterpreted. I certainly did not mean that shame was associated with it. On the contrary, what I meant was these issues are so very complicated that the names placed upon such conditions ultimately become confusing in of themselves. That is just my view. An imbalance exists and that is the issue, whatever name it is given, and there is no shame associated with it. After all, we all have issues of our own, and those of us who come onto this site bear all. I am very sorry If I in any way offended. Truly not intended. My heart is with you.

I wish you and your dear daughter all the very best. I don't know what else to suggest. It sounds like you are doing great things for her. Perhaps it is a question of time for things to go back into balance. There is every hope that it will !

Feb 19, 2018
Thank you
by: Anonymous

Thank you.

I was not offended and your words are heartfelt and kind. I understand what you are saying and your advice is much appreciated.

Lisa

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