Freaked out by voices in my daughters head

amother

Wed, Oct 13 2021, 10:55 pm

I'm extremely concerned by what my daughter shared with me.
She has a voice in her and "sees" a person in detail telling her things (not what to do. Just disparaging comments)
She said she has been having this for years already but was embarrassed to tell anyone. She can sit at her desk, or lay in bed, and hear this person say snarky things. Not long sentences, just a few words or so, imitating or criticizing her.

I hope someone here can guide me about where to turn for this. I'm so nervous about this and just want to see her whole and happy.

Do I take her for trauma therapy? She was my oldest and had a difficult childhood, and I was not experienced and didnt handle it so well at times. I've grown a lot along with her and we bh have a great connection nowadays. Is it possible this is caused by residual trauma from childhood?

Can it be pandas related? She had been having rages, mood swings, insomnia and other pandas related stuff that went away when I put her on a pandas healing regimen a couple years ago.

I would only do psychiatry as a last resort since I know there isn't much they can offer. I hope there is a different, maybe more holistic approach that can help make sense of and resolve this.

She's 9 and a bright, likeable and mature kid. She does not have any other mental health issues (except for mood swings and impulsivity that went away on pandas regimen). This is coming out of left field and really shocked me.

She is not an attention seeking and is definitely not making this up.

She is a sensitive child and has very strong emotions, and has always had difficulty regulating but we have seen major improvement since addressing pandas. She also has some self esteem issues.

She has been on the pandas regimen a couple years already, and we had been seeing consistent, long lasting improvement for so long already that about a month ago I felt like we can try taking her off and seeing if she's fine without. Can there be any connection to this? Could her inner voice/ hallucinations be a very odd backlash?

Any help and guidance is appreciated here.

amother

Daphne

Wed, Oct 13 2021, 11:00 pm

This is brain inflammation. So many pandas parents report that their children have visual and auditory hallucinations. In addition to treating for strep I would also test for Lyme and co ASAP.

https://www.medicalnewstoday.c.....14660
Research out of Stanford pans clinic, up to 30% of kids with pans experience auditory and visual hallucinations https://pubmed.ncbi.nlm.nih.gov/30605785/

FWIW, my dd with pandas once told me during a very bad flare that she heard a voice say “dd you are going to gehinnom”. It freaked the living daylights out of me and I really upped my game after that. We’ve never had this happen since.

Read Brain on Fire and Brain Inflamed

chanchy123

Thu, Oct 14 2021, 1:10 am

Zehava wrote:

Please. This isn’t a time to be “natural minded”. By all means give her supplements but please take her to a qualified psychiatrist. This could be serious and get worse if you let it go on.

Yes, please take her to a psychiatrist. That’s the kind of doctor she needs. Just like if she has a leg injury you’d take her to an orthopedist.
I can’t imagine how terrifying this must be for you and her - please do the right thing and take her to the right kind of doctor.

amother

Pink

Thu, Oct 14 2021, 1:19 am

And by the way, the answer to your questions is yes. Hearing voices and seeing things can be a reaction to a particular anxious time in their life. It doesn’t necessarily mean mental illness, which is why it’s important not to show your daughter that you’re freaked out. It will amp up the anxiety.

If she has experienced trauma, the questions mount:
1) why are you continually treating her for years for Pandas?
It’s very possible that taking her off of a medication regimen (years???) that is not approved by the board of pediatrics is absolutely having a rebound effect, but the solution is not to put her back on this unscientifically sound holistic path you’re on.

2) she needs a therapist. Not necessarily for the voices, but certainly for trauma.

3) if you’re somehow treating your daughter for pandas for years, how is a neurologist not involved here? Ask him/her.

FranticFrummie

Thu, Oct 14 2021, 5:59 am

OP, I realize that right now you are terrified for your DD.

Please don't freak yourself out if it turns out to be childhood onset schizophrenia. There are new classes of antipsychotic medications like Latuda that are extremely effective with minimal side effects.

Once her symptoms are damped down, therapy can help her so much with learning how to recognize what is real and what isn't. She'll also learn coping mechanisms for times when she really can't tell the difference. She'll need safe people around her to understand, and help keep her grounded.

Medication compliance is NOT negotiable. The biggest problem with people who have schizophrenia is not so much the condition itself, it's when the person starts to feel "normal" and they are sure that they don't need the medication anymore. Non compliance is unfortunately the most common delusion when a person is finally stable.

It's a big challenge, but with proper support she can can have a very good quality of life, and even get married and have children.

I'm davening that this is actually just anxiety related with intrusive thoughts, and that it is easily fixed with CBT.

imasinger

Thu, Oct 14 2021, 6:18 am

The usual place to start is with the pediatrician. In this case, there may be a recommendation to test for a few of the conditions described here, or not, based on details that a professional can note.

They can recommend a psychiatrist, who can consider child onset schizophrenia, and also speak more about other possibilities. They can also récommend a psychologist, who can look into the question of trauma.

It's tempting to lose sleep blaming it all on yourself, but it's not good for you or for your DD. If you find yourself focused in that direction, there's no shame in seeking support and help for yourself as well as for DD.

sequoia

Thu, Oct 14 2021, 6:31 am

I’m gonna share something really personal with you, OP.

I’ve had this my whole life. Voices in my head telling me, “ugly b*tch wh*re,” “stupid ugly sl*t,”
shaming and criticizing me for my choices: “this is what you wanted, you idiot,” telling me to ignore my feelings and symptoms: “it’s not that cold, it’s not that loud, it’s not that bad, it barely hurts,” etc.

I’m 36 and only this year have I been able to turn these voices off by being kind to myself.

I think therapy could really help your daughter now, so she can live a happy confident life.

watergirl

Thu, Oct 14 2021, 6:33 am

imasinger wrote:

Echoing this. I have a close relative who has schizophrenia and my best friend‘s son has a schizoaffective personality disorder; similar but not the same in terms of treatment. Auditory or visual hallucinations is a pretty strong indicator to see a psychiatrist.

FranticFrummie

Thu, Oct 14 2021, 6:35 am

sequoia wrote:

Wow. I am in awe of how brave you are in this post. I'm really touched by how you put yourself out there under your screen name, to comfort OP.

You are a strong and amazing person! Hug

Frumwithallergies

Thu, Oct 14 2021, 6:46 am

I am sorry your daughter is going through this, and you with her.

I will point out that PANDAS /PANS are very different from other neuro-inflammatory diseases (such as Multiple Sclerosis---does not usually give psychotic symptoms; and other diseases such as anti-NMDA encephalitis).

You need to speak to your pediatrician, who can do the bloodwork, and get referrals to a pediatric neurologist AND pediatric psychiatrist.
Hatzlacha! And refuah shleima to your daughter.

amother

Daphne

Thu, Oct 14 2021, 8:44 am

Frumwithallergies wrote:

Pans/pandas is not all that different from nmda receptor encephalitis, it just targets dopaminergic receptors in the basal ganglia instead of glutamate receptors. We also don’t know what % of kids with pandas would actually test positive for anti nmda receptor antibodies if physicians would actually order spinal taps when children presented with such disturbances. Either way according to research out of Stanford I linked above, up to 30% of children with pandas and pans experience auditory and visual hallucinations, so it’s actually quite common.