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Post by beaglemom on Apr 2, 2024 23:39:45 GMT
We're having some major mental health struggles with our 11 year old ds and this is something that has been mentioned as a possibility. We are currently playing phone tag with the local clinic to try to get him in to be seen/evaluated. I'm just wondering if there are any peas with experience.
Thanks!
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Post by compeateropeator on Apr 3, 2024 0:46:31 GMT
I have not but that was a possible diagnosis for my nephew about 5 or 6 years ago. They ended up diagnosing him with autoimmune encephalitis. He did a long span of IVIG treatments and has been fine since. So I can’t help you with the any questions about PANS but I just wanted to send my heartfelt sympathy for what your son and family are going through. I wish you all the best with a diagnose and treatment.
ETA - I think the IVIG treatments are sometimes used with PANS.
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Post by mom on Apr 3, 2024 2:06:24 GMT
For some reason, I am thinking leeny might have PANDAS? I could be completely wrong -- and I apologize if I have her confused with someone else. But I think I recall a thread when she talked about it. Maybe she will see that I tagged her and comment and let us know. |
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Post by compeateropeator on Apr 3, 2024 2:37:36 GMT
I went back and looked at my history because I was pretty sure I had asked about the autoimmune encephalitis and heatherx had responded about PANS/PANDA…but it was back in 2016 so I am not sure if she is still here and/or active. You could try reaching out to her. It was the only response I got back then.
This was her response:
I'm headed out for the night so I cant' respond until tomorrow, but generally IVIG is a treatment for PANDAS or PANS. The code doctors use to get treatment covered for these disorders is autoimmune encephalitis. What are the symptoms? Was it caused by strep? My daughter has been treated for this for over a year now and I know there are other peas with PANDAS kids or who have heard of it.
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Post by revirdsuba99 on Apr 3, 2024 5:03:01 GMT
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Post by calgaryscrapper on Apr 3, 2024 5:12:17 GMT
Just brought a thread forward by heatherx that might help. Title of thread is:
Advice for my 6 year old daughter. *update 5/13
heatherx
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Post by revirdsuba99 on Apr 3, 2024 5:18:00 GMT
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leeny
Pearl Clutcher
Posts: 4,630
Location: Northern California
Site Supporter
Jun 27, 2014 1:55:53 GMT
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Post by leeny on Apr 3, 2024 19:54:18 GMT
For some reason, I am thinking leeny might have PANDAS? I could be completely wrong -- and I apologize if I have her confused with someone else. But I think I recall a thread when she talked about it. Maybe she will see that I tagged her and comment and let us know. Nope, not me. |
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Post by mom on Apr 3, 2024 20:41:11 GMT
For some reason, I am thinking leeny might have PANDAS? I could be completely wrong -- and I apologize if I have her confused with someone else. But I think I recall a thread when she talked about it. Maybe she will see that I tagged her and comment and let us know. Nope, not me. Ooops. My bad! |
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iluvpink
Pearl Clutcher
Posts: 4,278 
Location: Michigan
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Post by iluvpink on Apr 4, 2024 11:38:07 GMT
I don't but I have an acquaintance (former hairdresser) whose daughter had this. If you'd like I can contact her and see if she'd be willing to talk to you. Her daughter seems to be doing fine now from what I see on FB.
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Post by freecharlie on Apr 5, 2024 4:19:39 GMT
I had a student with PANDA. I know that when he was coming down with an illness or was sick, his behavior got worse.
I'd call or email his mom when his behavior changed and often he would have strep or something
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nurselinda
New Member
Posts: 4
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Post by nurselinda on Apr 6, 2024 17:46:30 GMT
I had a student with PANDA. I know that when he was coming down with an illness or was sick, his behavior got worse. I'd call or email his mom when his behavior changed and often he would have strep or something |
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nurselinda
New Member
Posts: 4
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Post by nurselinda on Apr 6, 2024 17:47:48 GMT
There is a mother on instagram Iheart2plan that has extensive experience with a daughter that has suffered from Pandas her son also had a less severe case. She would be a great person to connect with. She is very passionate about sharing their extensive experience.
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doglover
Full Member
Posts: 233
Jun 27, 2014 14:50:33 GMT
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Post by doglover on Apr 9, 2024 11:32:28 GMT
I belong to a group for people with hypoglycemia. Many group members didn’t realize they were having erratic blood sugar swings. Once they addressed this, their anxiety, depression and rage went away. I believe that a lot of mental health issues have an underlying physical cause. I would get a continuous glucose monitor and see what is happening with his blood sugars to rule out this being a cause. Fasting glucose or occasional finger prick readings aren’t sufficient. Dr. Mark Hyman just put out a video on YouTube about how the digestive system affects mental health. I also believe that sleep has a huge effect on mental health. Dr. Hyman’s Video |
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