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PANDA AT BIRTH


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My child has been agitated since birth. At ten days old she developed a walnut sized lump under her ear. Not sure what it was. Age 2, she was aggressive with lots of confusion. She is 11 right now. She has severe OCD with racing thoughts. She is super confused and can not make a decision. She literally goes in circles trying to get her self ready. She has extremely distorted thinking. There is more....She gets violent, hits and kicks. I have only seen her look normal about 5 times in her life. Doctors are confused. She bumps into everything. Rages that she does not want to get old. Screams if I tell her she is getting big. She has some psychosis. When she looks at me (her mom) she screams that I look too pale, and it freaks her out. Ugh. Please help me. She is such a mess. I had tons of blood work done by Dr. Trifilettin in Ramsey NJ. The only thing he found is that she has low IgE and IgG4. Any comments are welcome. Thanks

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I don't know about the possibility of PANDAS at birth. Perhaps it's possible, or perhaps there are factors in place at birth that lead to the susceptibility to PANDAS. I will say this. My son was "challenging" since the moment he was born. I couldn't put him down, he nursed 24/7 and he NEVER slept by himself until he was 4/12. He was high maintenance as a baby/toddler and had some anxiety. BUT, I say the PANDAS started when he was 5 and had a sudden personality shift and behavioral changes. Still, though... there was "something" before that.

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I don't know about the possibility of PANDAS at birth. Perhaps it's possible, or perhaps there are factors in place at birth that lead to the susceptibility to PANDAS. I will say this. My son was "challenging" since the moment he was born. I couldn't put him down, he nursed 24/7 and he NEVER slept by himself until he was 4/12. He was high maintenance as a baby/toddler and had some anxiety. BUT, I say the PANDAS started when he was 5 and had a sudden personality shift and behavioral changes. Still, though... there was "something" before that.

 

She had an MRI and it showed nothing except sinus infection. Could that sinus infection have been the cause of something?

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My son's first pandas episode was at age 5. He had a whole bunch of tests done. The only thing that showed up was on the MRI. It showed a sinus infection. A complete blockage of all sinuses. Yes, that sinus infection is a big deal. The sinus infection was probably strep. Strep hides in the sinuses.

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My dd's started their PANDAS symptoms around 1 yr old. However I have learned that they have congenital lyme and in retrospect they were affected by this as babies. I do believe you can be born with, or catch soon after birth, different bacteria and viruses that will affect the child and give PANDAS symptoms.

 

The bumping into everything makes me think of lyme. My dd does that too but it may be a PANDAS symptom as well.

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I think my Allie was from birth- may have been something I passed along to her? But she was the only one of my kids that got that darn HepB vax on the day she was born (it was the 1st year hospitals were doing that here)...then high bilirubin levels. The horrible PANDAS stuff really started when she was @ a year old, but really, there was something off before that. I think teething accelerated everything, and still does. She's been trying to cut her 12 year molars for over a year now. I wish there was a way to get them through w/o inflammation!

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Wilma, we spoke on the other forum and thru email. But I forgot to ask you, did you have the cunningham test done?

 

Also, the confusion and bumping into stuff makes me think of yeast...does she act like she is drunk sometimes? Extremely silly?

Edited by Stephanie2
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My son's first pandas episode was at age 5. He had a whole bunch of tests done. The only thing that showed up was on the MRI. It showed a sinus infection. A complete blockage of all sinuses. Yes, that sinus infection is a big deal. The sinus infection was probably strep. Strep hides in the sinuses.

 

Do you think the sinus infection could have been there the first day of life, because I saw signs of mental illness on day one.

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I think my Allie was from birth- may have been something I passed along to her? But she was the only one of my kids that got that darn HepB vax on the day she was born (it was the 1st year hospitals were doing that here)...then high bilirubin levels. The horrible PANDAS stuff really started when she was @ a year old, but really, there was something off before that. I think teething accelerated everything, and still does. She's been trying to cut her 12 year molars for over a year now. I wish there was a way to get them through w/o inflammation!

 

Was Allie born in 1999? My girl was.

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Wilma, we spoke on the other forum and thru email. But I forgot to ask you, did you have the cunningham test done?

 

Also, the confusion and bumping into stuff makes me think of yeast...does she act like she is drunk sometimes? Extremely silly?

Hi Stephanie. No not drunk. She is super confused and clumsy. Very agitated and mean. I treated her for yeast for years. No help. We did the chelation for a long time. No help. Do PANDAS kids also have lots of yeast like the vaccine damaged kids?

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Wilma, we spoke on the other forum and thru email. But I forgot to ask you, did you have the cunningham test done?

 

Also, the confusion and bumping into stuff makes me think of yeast...does she act like she is drunk sometimes? Extremely silly?

Hi Stephanie. No not drunk. She is super confused and clumsy. Very agitated and mean. I treated her for yeast for years. No help. We did the chelation for a long time. No help. Do PANDAS kids also have lots of yeast like the vaccine damaged kids?

 

Not sure if Dr. Trifiletti did the cunningham test. Would that be blood work?

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Do PANDAS kids also have lots of yeast like the vaccine damaged kids?

 

At least one of the PANDAS specialists (Dr. L) has said that PANDAS kids have a curious immunity to yeast problems. I don't know if this is true, but my own son has been on full strength abx for 2 years and has never had a yeast problem, in fact probiotics seems to make him vaguely worse.

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I think my Allie was from birth- may have been something I passed along to her? But she was the only one of my kids that got that darn HepB vax on the day she was born (it was the 1st year hospitals were doing that here)...then high bilirubin levels. The horrible PANDAS stuff really started when she was @ a year old, but really, there was something off before that. I think teething accelerated everything, and still does. She's been trying to cut her 12 year molars for over a year now. I wish there was a way to get them through w/o inflammation!

 

Was Allie born in 1999? My girl was.

No, '94.

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