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Dear anyone, 2 years ago I had a normal daughter13 year old. Then my shy quiet girl woke up one day and was different. For two weeks she was loud , violent, aggressive and lying. after two weeks she slowed down but was still very outgoing. she also couldn,t sleep would only have 2 to 3 hours of sleep a night. Almost exactly a month after the first episode she basically went to sleep for a month and became very shy. Then it all started again. This lasted for more than a year. We received no medical help. GPs were good but anybody past that level said she was a naughty girl and we were bad parents. Of course I took her every where but no one would help. Eventually I used a drug called Diamox (supposed to reduce pressure to the brain) with help of a GP. This stopped the servear and really violent episodes. Used Diomox for 2 months. Another 4 months went by still with quiet month then noisey month. All of a sudden she started hearing voices, Her smell became really heightened and she wanted to wash her clothes all the time because they stank. She would also close her eyes when she ate food. She would also repeat sentences over and over again. The voices lasted 4 to 5 days. Then she went into quiet mood again. Then back to naughty and loud then the voices would start again. This was all over a 3 month period. It no longer had a real time pattern. After the voices she was no longer her normal self and was acting as if she was slightly autistic. This has been going for the past 9 months.

She was diagnosed with psychosis . She is now on Risperdal but her symptoms have not improved. So we have had a very sick girl for the last two years. She has also had to attend special school . During her quiet and voices times she can't attend. If anybody has had similar experiences or believes this is a panda like sickness could you please let us know. We live in an isolated part of Australia so hard to get medical help.

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So sorry you're going through this. While some of the symptoms (hearing voices, especially) are outside of our experience and not one I've heard/read of being common to PANDAS or PANs, your DD's positive response to the brain anti-inflammatory (Diomox) -- even if it doesn't quell ALL of the symptoms/behaviors -- suggests to me that there is some sort of brain inflammation (encephalitis) potentially at play here.

 

You've said you've taken her everywhere and gotten no help, but I'm not sure who you've seen and/or what specialists you've tried. Have you seen a neurologist? Had a full PET-scan to identify any abnormal swelling in various parts of the brain?

 

Wish I had more to offer; perhaps someone else here will.

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I'm so sorry you daughter and family are going through this. My son was 14 years old when his worst flare up of autoimmune encephalitis occurred. Of course we had no idea at the time that that was what it was. He has a diagnosis of autism since age 3. He kept having what we called autistic regressions every few years. Then at 14 he started having paranoia, hallucinations, severe anxiety, sleep disturbances, ocd and loss of communication. He could no longer attend school due to the cognitive damage it caused over the years. His IQ dropped 18 posts. Once an honor roll student with friends, he is now without friends and extremely agoraphobic. He has become completely disabled by it. Diagnosis PANS/PANDAS. HOWEVER, I still wonder if it might be some other type of autoimmune encephalitis. Antibiotic treatments aren't helping much and steroids made his tics worse.

 

Do a Web search for Anti-NMDA Encephalitis and see if it sounds like what your daughter may be going through. It is much more common in females aged teen through child bearing years. It is often related to ovarian teratoma cysts. It can be diagnosed through bloodwork and cerebral spinal fluid( lumbar puncture)

 

Please keep us all posted. Hope you find some answers soon.

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Thank you for responding, We did go to a neurosurgeon in Adelaide(3000KM) away but he wasn't helpful. She had an mri but it didn't show anything.

Our older daughter has been very sick also . 2 years anxiety and brain fog for no reason. Then full body paralization for 3 minute periods then Personality disorder also diagnosed with pots. Also reponded well to diamox infact became "normal" for short periods but couldn'T remember the previous 2 years. Most of the time she is okay now with short periods of personalilty changes. Has returned to school.

Most of the mental health practitioners and children's doctors were suggesting I was the problem. To be honest it seems to be something with the immune system so it has the same symptoms as many disorders.

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  • 3 months later...

Hello, I know it was quite a while ago that you posted your question, Trevor, but what you wrote has really struck a chord for me. How is your daughter now? I so hope that she is not suffering as badly as she was when you posted back in November last year.

 

My daughter is 13 and she has very similar symptoms to your daughter with hearing voices, halucinating. She also has all the other PANS/PANDAS symptoms of tics, OCD, depression, anxiety and a whole host more! It is extremely distressing and traumatic for her and us and it came on very suddenly after an illness. She has been on anti depressants for 4 months and they haven't made any difference at all. She was also in a psychiatric hospital for 5 weeks. Nothing has helped. She has periods where her symptoms are bad but not terrible and then times when they are much much worse. We have finally tracked down a doctor in the UK who knows about PANDAS and she has undergone a load of blood tests. So far they have come back normal except for raised strep A titers. We are still waiting for some other results which should come in over the next week.

 

The PANDAS doctor that we are seeing said that the hearing voices and hallucinations are likely part of the OCD and having intrusive thoughts which she does really suffer from. So whilst it is not a 'typical' symptom of PANDAS, it can be associated with the condition through the OCD.

 

I was very interested to read that you have been giving her Diomox. I have never heard of this drug and will speak to our doctor about it to see if he thinks it might be worth considering for my daughter.

 

I just wanted to respond to your post so you knew that you weren't alone with having a child who hears voices.

 

Take care.

 

 

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