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How many parents think THEY had PANDAS?


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As a child I was also sensitive to sounds. I couldn't go to the movies since the Dolby sound pierced my ears. I also heard the lights in the malls and department stores. It was so high pitched it was like nails on a chalk board to me. No else had this problem.

 

I also had many teeth issues too.

 

So, Kay, during pregnancy, things seemed to level out?

 

Another thing that is intersting is my first child was premature and they said, in hindsight, it may have been toxemia. They said when that happen the body sees the baby as a foreign object and tries to find a way to rid the body of it It doesn't happen with subsequent pregnancies with the same man because the body now recognizes it? I can't fully remember the explanation.

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As a child I was also sensitive to sounds. I couldn't go to the movies since the Dolby sound pierced my ears. I also heard the lights in the malls and department stores. It was so high pitched it was like nails on a chalk board to me. No else had this problem.

 

I also had many teeth issues too.

 

So, Kay, during pregnancy, things seemed to level out?

 

Another thing that is intersting is my first child was premature and they said, in hindsight, it may have been toxemia. They said when that happen the body sees the baby as a foreign object and tries to find a way to rid the body of it It doesn't happen with subsequent pregnancies with the same man because the body now recognizes it? I can't fully remember the explanation.

 

 

I was feeling pretty good by the time I got pregnant had three years under my belt by then and they pregnancy was good..seemed to backslide a bit afterwards and that was when i had another round of the amino acids and the nystatin for the yeast within a couple of years after her birth.

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I was asking because I recently read the are doing a study to see if pregesterone would help with brain injuries because they think it would take down swelling on the brain. So, then I thought, well, progesterone increases in girls with puberty then once again during pregnancy. I wonder how much it drops post pregnancy. If that would at all play a factor in way you you backslid afterwards.

 

If the increase in progesterone took down more inflammation then the drop was a shock and swelling reoccurred.

 

Just thinking out loud.

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I was asking because I recently read the are doing a study to see if pregesterone would help with brain injuries because they think it would take down swelling on the brain. So, then I thought, well, progesterone increases in girls with puberty then once again during pregnancy. I wonder how much it drops post pregnancy. If that would at all play a factor in way you you backslid afterwards.

 

If the increase in progesterone took down more inflammation then the drop was a shock and swelling reoccurred.

 

Just thinking out loud.

 

Well it all sounds possibly to me and the inflammation is connected to so many things, even the food allergies etc. Keep thinking out loud!

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I've seen a couple parents post that they wonder if they had/have PANDAS. I'm wondering how many wonder this and why.

 

As for myself, I had tonsilitis over and over again as a child. They stopped testing me for strep, but would give me antibiotics (penicillan) every times my tonsils were covered in spots. I remember having OCD tendencies as a child, I remember misbehaving a lot, not listening, major fights with my mom, even me being physical. Looking back I can't remember how bad I behaved and my mom passed away so I can't ask for details. At one point I was agorophobic. But, I've been tested for strep as an adult and never had a + test.

 

I've had a neurological issue in the past that involved inflammation of the optic nerve. It makes me wonder if that means that I am prone to inflammation problems.

 

Some OCD and OCD spectrum disoders run in my family. My cousin was a strep carrier that never got cleared-her brother has BDD. There are a lot of autoimmune disorders on my mom's side of the family (same side that has the OCD issues). An example is my mom had horrible RA and dermatomyocytis.

 

It just makes me wonder. For awhile I've "just known" that PANDAS comes from my side of the family (not my husband's), but I never quite put the dots together to think that maybe, just maybe, I could have had it myself.

 

I had way more intrusive thoughts than most kids and I had some rituals that made them easier to manage for me. I hid them growing up, my parents would never have understood. They are only now just starting to understand as their grandson goes through it (far worse, though, than I ever did).

 

Interestingly, the day before his first titers were drawn 3 years ago confirming diagnosis, I had him in to see an herbalist in our town. I was seeking answers anywhere and the allopathic medical community had let me down on a grand scale at that point. She did applied kinesiology on him and he tested very strong everywhere except when she puts two fingers on his clavicle and he couldn't begin to resist her pressure on his arm. She turned to me and said in her British accent, "The boy is covered up with strep." She knew nothing of me discovering PANDAS online, she only knew I had a 12 yr old who was paralyzed with fear out of nowhere. As we discussed further and it came to her attention that he had NEVER been diagnosed with a classic strep throat, she asked about his dad's and my medical history. In discussing our childhoods I mentioned that mine was uneventful save for recurring urethral strictures from 16 mos til about age 8. She immediately shook her head and said, "Did you know almost all urethral strictures are strep related?" No, I didn't know! It's her belief that I may have passed this on to Gatlin though he had enough ear infections in the first two years of life to support that theory, too.

 

At this point, I don't believe removing his tonsils would solve our problem and I suspect he may have never been fully clear of strep, a condition that this herbalist says is rampant among those with even manageable quirkie behavior. In my head, I keep coming back to a strep biofilm and a BBB that, for whatever reason, is too porous.

 

Gat's mom.

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