New and need some input

[2girls mom]

Hi. I just discovered this board today and the discovery has been amazing to me. I have 2 girls...ages 9 and 6. I actually found this websit thru the 'tics and tourette's' book I've been reading for my 6 yr old. She has, for the past few months been having tics and I've been doing some research. However, when I found this board, I'm now starting to wonder about my 9 yr old on a separate topic. Reading some things about PANDAS, they seem to fit her. She is very good in school, listens, great grades, great in sports, etc. However, at home, different story. She is VERY particular. And for the past few months some things have gotten worse. Going to be is a nightmare. She asks us over and over again to check on her, wants to know what we're doing, when we're going to bed, etc. She has to have a particular routine of an increasing amount of things done...a certain pillow to read, has to be put back in the right spot, needs her water, etc. Bedtime has been increasing stressful on everyone. If no one does check on her, she'll yell and scream to make sure we answer.

 

Then there are the temper tantrums. Just the other day is a good example. We went to pick up lunch. She wanted a shake with her lunch, we said no, because we were between soccer games and well, she didn't need one. She carried on and on literally screaming how she needed a shake with her lunch. The entire ride home, telling us to go back and get one, had no regard whatsoever to any discipline. Finally about 15 min after we got home, she came down from her room and ate, then just carries on with a normal happy conversation, like nothing is wrong.

 

Finally, her with her sister. I read somewhere online that someone was literally 'allergic' to their sibling. This may be totally off base but she is so mean to her little sister. I have nothing to compare to being an only child, but most of the time from the minute she wakes up she is concerned with not talking to her, sitting by her, her sister looking at her, the list goes on and on.

 

I also wanted to add, she had strep SO much when she was younger. To the point they almost wanted to take her tonsils out, it was continual for a couple years, every other month. Not sure if that is related or not either.

 

Like I said, I just today stumbled upon all of this, so I'll be visiting her doctor and doing more research, but since you are familiar with things, I thought it would be helpful to get some input if this could possible be PANDAS or not based on how she's been. Thanks for any advice!

Edited September 29, 2010 by 2girls mom

[peglem]

I also wanted to add, she had strep SO much when she was younger. To the point they almost wanted to take her tonsils out, it was continual for a couple years, every other month. Not sure if that is related or not either.

 

This really stuck out for me because when my daughter was younger she had regular symptoms of strep. After a few years, she still had strep, but the only symptoms were behavioral. So, maybe you want to get her checked for strep, even if she doesn't "look" like she has it.

[KaraM]

Hi And Welcome,

 

If you haven't already, take a look at the Helpful threads at the top of this forum. There is an FAQ that is very helpful in figuring out whether there is a good chance your child has PANDAS.

 

I agree with Peglem. Get her (actually, get them both) tested for strep. If the rapid throat culture comes back negative, have it cultured. If that comes back negative, get a blood test.

 

Also, take a look at the thread about doctors and see if there is one in your area. What part of the country are you in? The top are mostly on the east coast, plus one in Chicago.

You should read Hergie's recent post about his visit with Dr. Latimer (at the very bottom). She is one of the top docs, but she said she only thinks there are 4 in the country (including her) that are truly qualified to treat.

 

You may be able to get started with the strep tests,but you are going to want a good doctor on your team. And most pediatricians are just not informed enough/open minded enough to be up to the task.

 

The website www.pandasresourcenetwork.org has a section for doctors and a lot of good info for you, too (much of it similar but sometimes easier to find than info on this board).

 

If your doctor give you a hard time about getting the strep tests done, show him this recent post by the director of the NIMH. You could also print out some stuff from the above website.

http://www.nimh.nih.gov/about/director/index-ocd.shtml

 

Kara<BR class=Apple-interchange-newline>

 

 

[2girls mom]

Thank you for the input. We actually live in the Chicago area, so could you point me to the doctors name who is in Chicago? I'm going to call their doctor today and follow up for them to get a strep test as well. Thank you.

[KaraM]

You hit the jackpot for location, 2Girls Mom!

 

Dr. K is in Chicago. This is his website:www.webpediatrics.com

Lots of good info on PANDAS there, too.

 

Thank you for the input. We actually live in the Chicago area, so could you point me to the doctors name who is in Chicago? I'm going to call their doctor today and follow up for them to get a strep test as well. Thank you.