Siblings and PANDAS - Advice?

[Suzan]

My 7 year old has ADHD behavior and I have her on all sorts of calming supplements (Magnesium, L-Theanine, GABA and Attend products). They help calm her behavior alot. She has sensory issues and is basically hyperactive. These past 2 days things have been building for her and she has had less success in staying calm and in control. Yesterday she came home saying she had a headache, was seeing flashes of light and green snowflakes in her eyes, felt dizzy and had a SORE THROAT.

 

She is emotional and reactive in a way she has not been for a while. She definately has the ups and downs more than her sister (who is the one being evaluated for PANDAS). Last night she was crying and asking why she was so afraid all the time, why she had to have a bed railing to feel safe, why she was afraid someone would come in the house and grab her.

 

A few months ago, maybe around the time she was treated for the vag. strep with her sister, she freaked out in class, running around laughing, refusing to do anything the teacher said. It was horrible. I know what you are thinking because now I am too..... PANDAS. I'm pretty freaked.

 

I can't get her into see the neurologist for probably 3 months. What would you suggest I do? Take her to the pedi and get a strep swab? She does not have a fever at this point.

 

Thank you for your support. I can only imagine what you have all gone through. I'm sure people will think I'm nuts. Thank goodness for our neuro. But what if the tests are normal. Now will I be happy or just more confused?

 

Susan

[peglem]

My 7 year old has ADHD behavior and I have her on all sorts of calming supplements (Magnesium, L-Theanine, GABA and Attend products). They help calm her behavior alot. She has sensory issues and is basically hyperactive. These past 2 days things have been building for her and she has had less success in staying calm and in control. Yesterday she came home saying she had a headache, was seeing flashes of light and green snowflakes in her eyes, felt dizzy and had a SORE THROAT.

 

She is emotional and reactive in a way she has not been for a while. She definately has the ups and downs more than her sister (who is the one being evaluated for PANDAS). Last night she was crying and asking why she was so afraid all the time, why she had to have a bed railing to feel safe, why she was afraid someone would come in the house and grab her.

 

A few months ago, maybe around the time she was treated for the vag. strep with her sister, she freaked out in class, running around laughing, refusing to do anything the teacher said. It was horrible. I know what you are thinking because now I am too..... PANDAS. I'm pretty freaked.

 

I can't get her into see the neurologist for probably 3 months. What would you suggest I do? Take her to the pedi and get a strep swab? She does not have a fever at this point.

 

Thank you for your support. I can only imagine what you have all gone through. I'm sure people will think I'm nuts. Thank goodness for our neuro. But what if the tests are normal. Now will I be happy or just more confused?

 

Susan

 

I suggest that you do get her swabbed for strep. If the rapid comes up neg. get it cultered. Many of our children experience strep w/o the typical symptoms. With PANDAS the immune system is hinky-and the typical symptoms are an immune response. Anyway, if it is PANDAS, you'll want documentation that the behaviors are associated with a strep infection. If you doubt the doctor will do a strep test, just tell him she has been complaining of a sore throat and you just want to make sure because you've had problems with strep infections at your home recently.

[Suzan]

I suggest that you do get her swabbed for strep. If the rapid comes up neg. get it cultered. Many of our children experience strep w/o the typical symptoms. With PANDAS the immune system is hinky-and the typical symptoms are an immune response. Anyway, if it is PANDAS, you'll want documentation that the behaviors are associated with a strep infection. If you doubt the doctor will do a strep test, just tell him she has been complaining of a sore throat and you just want to make sure because you've had problems with strep infections at your home recently.

 

Thanks for the documentation suggestion. I was able to get some dates of the last episode. I think her doc will do the test. He's good but I don't know if he knows about PANDAS yet. I have a call into the office and am waiting to hear back.

 

27-Jan "fliped out" at school

29-Jan Saw Dr. to discuss - got sister swabbed for vag. Strep - positive. Due to similar symptoms, she was treated too

30-Jan Started penicillin as well as calming supplements. Good improvement

5-Mar Received note from teacher that her behavior was getting better and she was having more good days than bad

25-Mar Rapid Strep culture negative. Flu B culture positive. Took Tamilfu. After 4 days started acting like she had tics or tourettes. Stopped Tamiflu!

2-May Starting to downward spiral after a really great period of time. Complaining of sore throat, headache, dizzy and flashes of light and green snowflake shapes in vision

To be continued.....