Feels like he is dreaming

[norcalmom]

well, you might have to go a distance. I'd wait on the cunningham tests. It took us 3 docs to find one that would give us a dx of pandas and prescription - but I knew that last doctor was versed in pandas before we saw her. I got in contact with the person who started the www.pandasnetwork.com page, who so happened to live near me, so I asked her where she went. This dr is a phychiatrist, and has a speciality working with OCD kids. So, it was nice that she could differentiate between what she sees in her typical OCD practice and what was happening with my son.

 

In the interum, I know that several people on the board us natual antibiotics, sold over the counter at healthfood stores. Oil of oregano is one, there are a couple others. You could look into that when your scrip runs out.

[bronxmom2]

I wonder... if your child was not suffering from PANDAS and said something like this... you might think you had some kind of philosophical prodigy on your hands.

I would be tempted to honor these feelings-- perhaps they represent some positive side of PANDAS.

 

As a young child (with PANDAS) I used to be able to lie down in a quiet room and chant "now is now" to myself and make myself float out of my body. I would float all around the room. It was exactly the same exhilarated feeling you get when you fly in dreams and it feels so real.

 

When I read in Saving Sammy that he chanted the exact same thing, "now is now"-- it sent chills down my spine.

 

But I do remember that the "now is now" thing was one of the best things about my childhood.

 

I know we should be scared of manifestation like this, but I suspect that your son is in possession of real insights and perceptions.

[Suzan]

As a young child (with PANDAS) I used to be able to lie down in a quiet room and chant "now is now" to myself and make myself float out of my body. I would float all around the room. It was exactly the same exhilarated feeling you get when you fly in dreams and it feels so real.

 

Thanks, that is a wonderful memory and good for me to know. My younger dd used to sit there so calmly and move her face from side to side. If I asked her what she was doing, she said if she moved that way she could feel God touching her face. I freaked me out but she really enjoyed it. I can't even imagine what she was experiencing. Now she does not remember it. I hope she does when she gets older.

 

She used to talk about reincarnation and wanted to know all the details about how long it took to come back into your next life and how it all worked and was confused that I did not know the answers. I felt like she had a window into the after life. She used to have seizures and I always thought it was from that but maybe from the pandas too.

 

My other daughter always wants to know why is she here and also wishes desperately she could know what it feels like to be someone else, a person, a dog, a bird. Thoughts that I feel happen to older people, not young kids.

 

susan

[lynn2]

Just want to mention, Emerson, that while your posts often make me cry, I never don't want to read them. You are a window into DS's brain that he can't open to me. He said yesterday that my attempts to help him with ERP were totally wrong, because I only see the outside of the OCD like I was trying to scale a mountain and could see the outside of it. But he lives in the valley inside the mountain and I will never get there or understand. Thank you for helping us.

 

Lynn

[momcap]

I wonder... if your child was not suffering from PANDAS and said something like this... you might think you had some kind of philosophical prodigy on your hands.

I would be tempted to honor these feelings-- perhaps they represent some positive side of PANDAS.

 

As a young child (with PANDAS) I used to be able to lie down in a quiet room and chant "now is now" to myself and make myself float out of my body. I would float all around the room. It was exactly the same exhilarated feeling you get when you fly in dreams and it feels so real.

 

When I read in Saving Sammy that he chanted the exact same thing, "now is now"-- it sent chills down my spine.

 

But I do remember that the "now is now" thing was one of the best things about my childhood.

 

I know we should be scared of manifestation like this, but I suspect that your son is in possession of real insights and perceptions.

 

Bronxmom2, Thank you for helping me see the positive, even in the midst of this scary ordeal. I have learned time and time again that I need to stop and really listen to ds more. There are things he is trying to say, and I'm always so busy trying to "fix him" that I don't usually hear him. When I do stop and listen I always gain insight into his way of thinking. He is an extraordinary child and sometimes I need to just stop and celebrate that fact.

 

I had an out of body experience as a very young child. I can remember flying around the room and seeing myself curled up on the floor. I remember being a little scared, but mostly it was fun and I wanted everyone to see what I could do. I remember the colour and texture of the carpet, the pattern on the furniture, the smell of the room. I described it all in vivid detail to my mom one day and she freaked out. I perfectly described the house that we moved from when I was 2. She said that I had a really high fever one time and had to be rushed to the hospital. It must have been then. It only happened that one time, but the memory is forever engraved in my mind.

 

Emerson - keep writing! I journalled when I was a young teen, probably PANDAS. I remember thinking it was really important to make a record of what I was thinking and experiencing. I think it was my way of crying out for help. In my mid 20s I found those diaries. My symptoms were long gone and I was embarassed when I read those things. So I burned the diaries. I will forever regret that decision. Keep writing, keep sharing.