Hearing Voices

[dut]

Hello.

 

Does anyone's child complain of hearing voices while having exacerbations. We seem to be having a really mild episode at the moment.. sock comfort issues for a couple of weeks since dd's brother has had an ear infection (we are on proph zith but upped to full course yesterday).

 

Anyway... dd had fever and lethargy starting Sunday night and Tuesday morning she's complaining of hearing voices when it is quiet. I thought it may be tinnitus due to some ear fluid build up but from what she is describing it doesn't seem to be. Neither does it seem to be the intrusive thought stuff but maybe it is? She has had the intrusive thought thing in previous episodes and it wasn't like this but I know how this thing can change.

 

Any opinions?

[momtotaylor]

Hi! Yes, during my daughter's first episode, she told us that there was a "bad guy" in her head and she could not get him out. This upset us, of course. Her psychologist explained to us that this was very normal for a child of her age going through this. She was four at the time. (Not sure how old you daughter is?) She was having intrusive thoughts and her psychologist told us that this was her way of verbalizing what was happening inside her head. She gave us strategies of ways to get her to "boss back" the voice in her head. It worked like a charm. I am not sure how effective it would be for an older child, but it certainly worked for her.

[T_Mom]

Yes, I have read that this is not an unusual report (as I understand it) when kids have severe OCD exacerbations.

I have read the critical question is whether or not the child says that the voice is "IN my head telling me..." (this can be thought to be OCD related) BUT if the child reports hearing the voice/s coming from outside of themselves this may signify something else.

(Seemed like an unusual distinction - but acknowledged in the OCD psych. world.)

[Suzan]

Yes, I have read that this is not an unusual report (as I understand it) when kids have severe OCD exacerbations.

I have read the critical question is whether or not the child says that the voice is "IN my head telling me..." (this can be thought to be OCD related) BUT if the child reports hearing the voice/s coming from outside of themselves this may signify something else.

(Seemed like an unusual distinction - but acknowledged in the OCD psych. world.)

 

DD7 has a little man inside her head that controls her body during her bad PANDAS episodes. But this morning, she heard a man in our house upstairs say "Come on, let's go" in a mean voice. It terrified her and now she won't go upstairs by herself again (this was a big problem with her until about 1 1/2 years ago). She's talked about it so much this morning that now dd6 won't go upstairs either. They had me search the whole place for the man (or men) hiding in the house waiting to rob us.

 

That said, dd7 is doing better than she was last week so this surprised me this morning. DD6 on the other hand, is sick now with a cold and she's crying for her "boyfriend" Timmy who she has not seen in 2 years and always starts crying about when she's not well. She also is crying because she wants to "go home", and we are home.

 

Susan

[thereishope]

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Edited September 29, 2019 by Vickie

[Suzan]

This is going to be the difficult part. If she asks you to search the house for the bad guy, you can't. I know that's going to be very difficult. Maybe do it one more time and warn her it's the last time you'll search. She may get upset next time you refuse, but you have to try to be strong and not do it. Otherwise, those voices may not pass.

 

When she tells you she hears the bad guy, tell her to yell at her head and tell it to stop making her hear voices. My son is 5. I tried that an didn't work very well since he kept hearing them. So then I yelled at his head. I made sure I told him first that I was about to yell but it wasn't at him. It was at his brain.I just looked at his head and said in a very stern voice, "Leave him alone. You are not allowed to scare him". At first he said the voices and images were coming more often then eventually he didn't say they were there anymore. It's worth a try.

 

Believe me, I will try it! We did discuss why that might be happening, related to the PANDAS but she didn't believe me.

 

This morning she's afraid but she's hearing noises that I hear too so no voices yet.

 

Susan

[thereishope]

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Edited September 29, 2019 by Vickie

[dut]

Thanks for everyone's responses. We think it was probably intrusive thoughts that she was having, just different to those she had had previously. Thankfully, that last epsiode resolved quickly and never really came to much.. just a smallish blip in response to a fever and a few days illness and we are back at baseline again with no symptoms at all... hopefully it will be a while before the next one.

 

Have folks seen the new site set up by Diana Pohlman? www.pandasnetwork.org

[FallingApart]

Can someone explain these "intrusive voices" to me? My dd is 3 and has PANDAS. She has only just recently made the smallest improvement on her new antibiotic and has just started voicing her anxieties. Before this she was just a meltdown a minute. Now she is at least voicing them and they are just spewing out of her mouth constantly. I'm wondering if what you are describing is going on with her but that she isn't able to voice it. If this is the case, what do I do about it? She is in therapy right now.

 

Thanks!

[dut]

As I think of them, they are uninvited disturbing thoughts that pop into your head and are difficult to get out, it's as if they get stuck on the thought. There is a good book by Tamar Chansky called Freeing Your Child from Obsessive-Compulsive Disorder. It helped me understand better what our dd was going through when this all first started.

[thereishope]

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Edited September 29, 2019 by Vickie

[KateandRyansmom]

My 17 year old daughter suddenly had a psychiatric breakdown where she told me she has been hearing a mean voice telling her horrible things and urging her to harm herself.  At the same time she started getting severe acne and extreme social anxiety.   She then admitted to me that she had heard the voice at times of stress throughout her life.  I took her to  a very reputable adolescent psychiatrist who diagnosed her with anxiety and assured me she was not schizophrenic which was my biggest fear.  He prescribed ssris which made it all worse. and she had to be hospitalized because the voice started telling her to kill herself.    I had a feeling her problems had to do with her early childhood strep infections and/or her catching mono at age 8.  She and I checked into PANDAS and both felt it was a strong possibility.  Coincidentally at the same time we were going through this crisis, I got news that Arizona State University had recently released results of  a study revealing that fecal microbiota transplant therapy (FMT) had shown very encouraging results with autistic children.  Since my oldest child has autism I began to research fmt and saw many accounts that it worked remarkably well for anxiety.  I started realizing that if fmt works as is claimed it is essentially an immune system transplant, since most of our immune system is in  our gut and it is basically a gut transplant.  I couldn't find any accounts of people doing it for PANDAS.  I was extremely desperate to help my poor daughter, and excited to try fmt for my son.  Since I didn't want to wait around for the ensuing FDA trials I took my children to Australia and had them do fmt with a gastroenterologist that specializes in fmt there.  My daughter began to lose symptoms beginning in the second week and by week four had no symptoms left at all.   She has not had even one anxiety attack, the voice is gone, the other symptoms are gone.  It has been three months and she is 100% symptom free.  She has gone off all meds (she was on risperdal for the voices) without any return or symptoms.    I can't really prove she had PANDAS (but I believe she did) but I just wanted to share in case it could help anyone else.  My son has normal stool for the first time in his life, has lost 20 pounds, and everyone around me says they see huge improvement in him.  I feel he is doing well and am happy to see his stool look normal, and he is definitely doing well but for me  only time will tell.  They say it takes a long time to see the autism symptoms start to diminish.  This journey was extremely expensive but we were desperate, and actually it wasn't as expensive as the hospitalization, etc. my daughter went through.  I don't want to give false hope.  I want to share in case it makes sense to any parents to try like it did to me.

 

 

 

 

 

 

 

 

 

[bws1565]

YES!  I heard about this on Del Bigtree's highwire show and was astonished by it.  I know several people who are DESPERATE to try this!  Can you share how you went about this; contact information etc.  Price, where to call, anything else you can think of?  

[KateandRyansmom]

So sorry this is so delayed.  I am new to this site and didn’t know anyone had commented.  I went to Dr Froomes in Melbourne, Australia.  It’s basically $300 per fmt and you should do 4 weeks, five times per week.  I had an initial phone consult with him $235 and then just went for it.  As soon as the kids finished school we flew there, got an Airbnb near his office and did it.  Both my kids are doing great!  My PANDAS kid has no symptoms.  It’s been about two months.  We were lucky and that our youngest child was tested and passed as a donor so we can now follow up at home. I’m super eager for other people to try this. I’ll answer any questions people have but I think the best thing to do is message me because otherwise I don’t get alerted that anyone’s responded