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Fears, Hallucination, Imagination?


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My dd11 has been suffering with something that I need to know if you parents have had experience with your PANDAS children also?? Ok, as hard as this is, here goes: She is telling her Father and I that she is seeing someone in her room and he tells her things. We have been in her room when she says he is there and there is no one that we see? I am really having a hard time typing this through the tears, so please bare with me. She is terrified to sleep in her room, much less even go in there. It , of course, is more detailed than this, but before I go any further, I need to know if any of you have experienced this with your children?

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Yes, my son had horrible hallucinations. He had them during the day and he would wake up seeing things in his room every night. He was constantly paralyzed with fear. He always mentioned that he saw these nightly things in green and Dr. K did tell us that this was a common color for halllucinations. And my son also had irrational fears, such as snakes in the bathtub and toilet, etc........

 

To give you some hope, our son has not had hallucinations in a long time, but he does goes through stages of irrational fears when he has setbacks.

 

Elizabeth

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Yes, my son had horrible hallucinations. He had them during the day and he would wake up seeing things in his room every night. He was constantly paralyzed with fear. He always mentioned that he saw these nightly things in green and Dr. K did tell us that this was a common color for halllucinations. And my son also had irrational fears, such as snakes in the bathtub and toilet, etc........

 

To give you some hope, our son has not had hallucinations in a long time, but he does goes through stages of irrational fears when he has setbacks.

 

Elizabeth

OMG! I can't tell you how much your reply has meant! She is paralyzed by this. She will have these "fears" (for lack of better words) to the point that she throws up from the anxiety (i am guessing). It is horrible to watch her go through this...what did you do? I just called her pediatric neurologist and I am awaiting a call from him shortly, but I fell so useless to her when she is seeing these things. Again, thank you for your reply!

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Our dd did not have hallucinations, but I have spoken with so many parents who have had this experience. You are certainly not alone. On another board of parents with OCD children (who largely do not understand PANDAS), this is actually discussed a good bit, and seems more common that I would suppose.

 

It's amazing how hard it is to type a post like yours - I admire you for sharing. It is even harder to ask a doctor about this. Just know that this is not your child's burden alone.

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Well, we began by treating our son with a High Dose IVIG. This gave him a great amount of initial relief. We then began doing monthly small dose IVIG's and he did start to backslide. We ended the IVIG's with another large dose a year ago. In March of last year, we discovered that our son had strep, mycoplasma, lyme, bartonella and babesia.

 

I was very surprised that he had so many infections after being on prophylactic Augmentin for a period followed by high dose Azithromycin and after doing so many IVIG's. We quit the IVIG's and focused on treating all of the infections with a lyme doctor (via ILADS). He is doing so much better, but it has been a very bumpy journey. The combination of multiple antibiotics has been more helpful than the IVIG's.

 

I hope this helps!

 

Elizabeth

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Well, we began by treating our son with a High Dose IVIG. This gave him a great amount of initial relief. We then began doing monthly small dose IVIG's and he did start to backslide. We ended the IVIG's with another large dose a year ago. In March of last year, we discovered that our son had strep, mycoplasma, lyme, bartonella and babesia.

 

I was very surprised that he had so many infections after being on prophylactic Augmentin for a period followed by high dose Azithromycin and after doing so many IVIG's. We quit the IVIG's and focused on treating all of the infections with a lyme doctor (via ILADS). He is doing so much better, but it has been a very bumpy journey. The combination of multiple antibiotics has been more helpful than the IVIG's.

 

I hope this helps!

 

Elizabeth

 

Wow! Thats alot! I didn't realize until reading this forum that there were so many different other diseases or infection our PANDAS children have to deal with also? I have a feeling I am going to need all of yall backbone to see me through this...Thank God he finally relieved some relief to some of the symptoms. Thank yall!

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My children haven't experienced hallucinations yet I too have heard that is common. My son does tell me from time to time that he hears two people arguing with each other in his head. He says its the same voice, as if a man is arguing with himself. He can't make out what its saying, just sounds like gibberish. Has this happened to anyone else?

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Yep, our son experienced this when things were really bad. Terrified us. The meds they gave him for his insomnia (ambien, sonata) made this 10 times worse, so if your dd is on any sleep or psych meds, these could have an impact as well.

 

All of this has resolved for our ds with effective PANDAS treatment. Your dd will recover, too!

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Yes my dd has hallucinated a few times,most where at the time of her major onset.At least twice, one time being when she saw an eye on the wall of the shower,she knew that it wasnt real-her words:"I just saw an imaginaiton of ..." But there where a couple of times when I think she hallucinated at school and seemed to beleive that what she saw was real.She hasnt had any lately but does have alot of irrational fears and some social anxieties.

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My dd11 has been suffering with something that I need to know if you parents have had experience with your PANDAS children also?? Ok, as hard as this is, here goes: She is telling her Father and I that she is seeing someone in her room and he tells her things. We have been in her room when she says he is there and there is no one that we see? I am really having a hard time typing this through the tears, so please bare with me. She is terrified to sleep in her room, much less even go in there. It , of course, is more detailed than this, but before I go any further, I need to know if any of you have experienced this with your children?

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