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PANDAS and Intrusive Thoughts


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Anyone have any experience/advice on how to handle the intrusive thoughts that can present with PANDAS? My DD5 has improved since initial onset and we recently started antibiotics, but I heard these thoughts are the last to leave. Has anyone elses children had these issues?

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Yes, our dd has severe intrusive thoughts...she was spending all day pacing and talking to herself. She had a IVIG a couple of weeks ago and they have started to decrease some.

 

Thank you both! I found another mother that was honest about what her child went through. It has helped me a little, knowing that we are not alone in this. Would you guys be opposed to a phone call from me?

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My child had severe intrusive thoughts, especially at nighttime. She was 11 at the time. They were the first symptoms to disappear after pex. They were horrible. I am so sorry your child is suffering this way. Another child of mine had intrusive fleeting thoughts of knives. They regressed after steroids (iv for asthma and pneumonia).

Please know you and your child are not alone.

Edited by PowPow
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Yes, our dd has severe intrusive thoughts...she was spending all day pacing and talking to herself. She had a IVIG a couple of weeks ago and they have started to decrease some.

 

Thank you both! I found another mother that was honest about what her child went through. It has helped me a little, knowing that we are not alone in this. Would you guys be opposed to a phone call from me?

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My DS 7 also has thought we call them brain talk. He also says his brain plays videos that show him very scary things. He's has ivig 1x and some of his PANDAS symptoms have gotten better but the brain talk is still there, though not as reoccurring as it was.

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My DS who is 6, when he was at his worst would have these so bad that he would shudder and cry out. He called them "scary dreams" even though he was awake. He is now in what I cautiously call a remission from PANDAS but he still occasionally will tell me that he has some, although they do not seem of the intensity they were before. We have developed a system where I put my hand on his head and "take the dreams out" this seems to help him visualize fighting them and moving on. PM me anytime!

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Homeopathy took my son,s intrusive thoughts away. It took about 3 months to find the

right remedy, but when it was found, the thoughts went away quickly. Since then we

have dosed him once every 6-8 weeks when symptoms come creeping back. He has

not had a dose since March 26...so far he is still holding!

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My oldest d had intrusive thoughts to the point of utter distraction--circles of swearing at God in her head, which bothered her to no end.

 

These went on for months, continuing after the more "obvious" symptoms all had gone with steroid treatment.

 

We finally did plasmapheresis --after about 10 days she said the constant intrusive thoughts were gone.

Edited by T.Mom
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My DD suffered from this as well. We used CBT (highy, highly recommend you do CBT in addition to any other treatment - it gives them life-long skills). 500mg/day of tryptophan has also helped immensely.

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