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My son 8 y.o. was diagnosed with PANDAS (sudden onset of OCD and then during next two weeks four more psychiatric conditions, along with bedwetting, joint pain and developmental regression, motor difficulties and personality changes), it was devastating to lose him in this way. He has now been treated with abx and IVIG and is much better. But he is still hallucinating (both visual and auditory), though the hallucinations now don't seem to have such a frightening content as initially. I don't hear much about hallucinations in PANDAS and one expert now told me it was rare with auditory hallucinations in PANDAS and that we should test him for an autoimmune encephalitis called autoimmune synaptic encephalitis or Anti-NMDA receptor encephalitis. I will have him tested of course (but we have to wait becuase the IVIG may mess up test results).

 

What are your experiences here? Have your children had hallucinations? What kind? How do you cope with them?

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I've not heard of many discuss hallucinations as a symptom. You may want to test for toxoplasmosis gondi. Here's a good article: http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/. You might also find something useful in this book, as it talks about nutritional imbalances and mental illness http://books.google.com/books?id=OPtObJOJ76QC&pg=PA98&dq=pfeiffer+Nutrition+and+Mental+Illness+:+An+Orthomolecular+Approach+to+Balancing+Body+Chemistry.&hl=en&sa=X&ei=xesiT_2gCOLv0gHm8IjgCA&ved=0CEEQ6AEwAQ#v=onepage&q=pfeiffer%20Nutrition%20and%20Mental%20Illness%20%3A%20An%20Orthomolecular%20Approach%20to%20Balancing%20Body%20Chemistry.&f=false

 

Finally, once the IVIG is far enough in the distance that you can resume blood work, you may want to test a few immune markers - like C3d, C4a, C3a - to see if the immune system is showing signs of being in overdrive, possibly indicating an ongoing infection (tho it won't tell you what sort of infection).

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2 of my children have hallucinations.

I have no idea how to comfort them- I just try to be patient and listening.

One of the children with the hallucinations is much more severely affected by PANDAS. We are a year post IVIG and 7-8 post plasmapheresis. The hallucinations are decreasing in frequency and are less scary.

I wish I had an answer for you. This child was tested for NMDA and it was negative.

The hallucinations were both auditory and visual and were very frightening (shadowy people in the hall, hearing a scary voice speaking her name- right in her ear, other similar things. I was very worried for a while that there was another psychiatric problem going on; as she has paranoia (very significant- regarding the FBI & such) and a few other symptoms I have not seen in my other kids (I have 3 with PANDAS- 2 much worse than the third.)

 

The other child with much more moderate and intermittent PANDAS- hear voices whispering to her. They do not command her to do anything and are only frightening in that she knows she is hearing something that is not real.

Just wanted to let you know you are not alone.

Out of curiousity, are you living in Sweden? IS PANDAS difficult to get recognized and treated there?

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DS16 had visual hallucinations when he was at the worst (a shadowy person in a black cape, that he insisted even the dog saw.) He is now also diagnosed with Lyme, and getting treated for that. Lyme is everywhere, and affects the brain. Has he been tested or seen an LLMD (it's actually a clinical dx, because the blood tests are so inaccurate.) Also, has he been tested for viruses.

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I live in Sweden, and I would say it is extremely difficult to get dx and treatment here, I am lucky in that I am a well-known professional in the Asperger's field, which means I have lot of friends and contacts who are MD:s and professors in child psyhicatry, child neurology etc, one of my best friend is the most well known expert on OCD in my conutry. YET it was very difficult to get dx and treatment, and I myself is in some post-crisis condition from having to deal with the heallth care system, just imagine what a parent without my connections would be going through! (My best friend followed to see dr's but she is now in research only and has no clinic so she couldnt test, treat etc my son.)

 

Although I am sad to hear your children hallucinates too, I am sort of glad to find someone to share that experience with in here. My son also had paranoia (he thought I was trying to kill him, which just broke my heart), but the paranoia seems gone since IVIG (3 weeks ago). Also his personality changes seems gone and I pray for them to not come back, that was the most difficult part. As it wasn't "him" anymore, I had to use willpower to love him. This sounds awful I know, but he was so different, as if another person had taken his place, was looking out of his eyes, and that broke my heart too, that I couldn't automatically love him as I have always done. If he had stayed that way I hopefully would have learned to love this "new person", but that is the most horrifying experience I have ever had, and just writing about it makes me cry right now...

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My son also experienced hallucinations. It was very hard to watch. He was convinced that someone was living in the wall and tried to dig them out with a spoon. This was a bit worrisome because he was digging by an electrical outlet. He also was convinced that someone had been to our house before and became very agitated when the person said they hadn't. He sees monsters looking at him all the time. My ds at the worst of it spoke nonstop to no one. We could not get him to stop talking he did this for days, months. I had no idea what he was talking about. Since his IVIG these behaviors faded. I am sure others on the board know more about this than I do. I was told you can still see symptoms fade up to a year after the IVIG. On Dr. K's website he states that 9% of patients experience hallucinations.

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Just as a side note, the side effects for some antibiotics (especially amoxicillin) list hallucinations as a side-effect. They are rare, but they are reported. So....for some, high-dose antiobiotics may be contributing.

My son also experienced hallucinations. It was very hard to watch. He was convinced that someone was living in the wall and tried to dig them out with a spoon. This was a bit worrisome because he was digging by an electrical outlet. He also was convinced that someone had been to our house before and became very agitated when the person said they hadn't. He sees monsters looking at him all the time. My ds at the worst of it spoke nonstop to no one. We could not get him to stop talking he did this for days, months. I had no idea what he was talking about. Since his IVIG these behaviors faded. I am sure others on the board know more about this than I do. I was told you can still see symptoms fade up to a year after the IVIG. On Dr. K's website he states that 9% of patients experience hallucinations.

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Hi - My dd also complained of hearing voices, which we think were auditory hallucinations, at one point. They were fairly mild.. usually late in the day, especially toward bedtime and lasted a couple of months or so. She had difficulty in specifically describing them. They seemed to morph into intrusive thoughts and now, recently, she said 'the voice is back' but now describes it as her own thinking but different in some way.

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Thanks for replies, he is not amoxicillin and the voices started before penicillin, he has heard very distinct voices, telling him he must die or demanding him to do things, so there's no doubt he really heard voices (he could describe them, which gener, age etc ) too. Now post-IVIG he mostöy hears sounds, not voices, but he has visual hallucinations too, not scary though (as the voices).

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My daughter also could describe the old man's, dark voice that talked, yelled at/to her. She was very specific and I think she heard the same voice most if not all the time.

I really think (of course, maybe I am just hoping!)that for some kids, this is just a very slow healing process. Like I wrote earlier, we are a year out from IVIG (which really seemed to make no difference) and many months post plasmapheresis (which helped immensely). It has been a very rough, bumpy road since then, but she is calmer, voices and sights are lessening in frequency and terror-factor. The OCD and anxiety is still a huge factor for her. Movements and incontinence issues drastically improved post pex.

My daughter also was not on medications at the time when the hallucinations were the most frightening. Antibiotics were ordered- but she refused them.

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My kids also had hallucinations at onset. My youngest saw whites spots in front of his face like fireflies, he called them ghosts, he walked around swatting at them and talking to himself, truly looked like he went insane overnight. It presented at first PANDAS episodes when he was not on Azitrhomycin, the hallucinations faded after a few weeks of starting the PANdAS protocol with Azithro and lots of supplements. My oldest also reported seeing ghosts and lasers coming out of the walls until treatment with antibiotics started working.

 

Neither of my kids have had IVIG or PEX, but used high dose antibiotics initially and a lot of supplements.

 

I just comforted them and told them that they were safe and there brain was playing tricks on them and that we were actively seeking a cure and they would be better soon. I also gave them phosphorus 30c and told them this remedy would take away the ghosts. It comforted them and treatment did relieve them of this burden.

 

One of my biggest fears is that hallucinations will come back, your right its as though your child is stolen and your left with this new person.

 

BTW I noticed Ibuprofen helped them and also clonodine early on before I had a PANDAS doc on board. After the antibiotics started the healing began quickly including the hallucinations. My son also gets auditory sounds in exacerbation that occur but they don't scare him and he rarely complains of this anymore.

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My DS8 had auditory hallucinations with confirmed active strep. He described hearing a baby that wouldn't stop crying, and later hearing beeping sounds. He knew it wasn't real and it scared him. The next day he had a possible absense seizure while at school. Several months later when he had strep again he had visual disturbances where everything looked distorted.

 

He had the "exorcist" version of PANDAS with violent rages and paranoia. At one point schizophrenia was on our radar. We suspect he had a couple of visual hallucinations as a toddler as well. He talks about giant spiders storming his bedroom door, and to this day believes this really happened. He was not on any medication when all of this happened. Since being on antibiotics it has not happened again.

 

He has PANDAS and lyme. We realized later that he was experiencing severe tinnitis or ringing in the ears. He would bat at the air around his ears and say he could hear a million crickets singing or bees buzzing and they were driving him crazy. I don't think this was a hallucination, but actual tinnitis.

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Get the spinal tap for NMDA. They can check for other types of encephalitis as well. This is a very important step. Whenever there are acute personality changes, in my opinion, a lumbar puncture should be done, as soon as possible.

 

My son also had auditory and visual hallucinations.

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