trademein

So, I picked up a copy of my DD10, medical records and saw she had a upper respiratory culture that came back as" Scant growth Beta hemolytic strep group B. What the heck is that? She tests + for A but B? I didnt know you can have that in the throat. Has anyone heard of this? Her doctor said it was + and to finish the Amoxil. Never mentioned Group B. Any input would be great. Sincerely, Kari

Hi, I haven't posted in a while. Its been 14 months since PANDAS invaded our lives. I can say my DD9 is about 50% back. We are having major issues with behavior. She doesn't listen and fights with us all the time. She is on Zoloft 50 mg but I don't see that helping anything but her anxiety. She is also on Strattera 40 mg which is also not doing much good and Pen V K 250 mg. BID. She was good for a few weeks but she seems to be going backward with her symptoms. So anyway her ID doctor said have her Adenoids checked. She said they can hide strep. Has anyone heard this? And is it worth it to get a tonsillectomy if she doesn't get strep often? And anyone who did a tonsillectomy has the PANDAS symptoms decreased? Thanks so much, Kari.

Hi, im'm in Ocean County and would love to meet up.

HI, My DD12 dx with Lyme 3/09. she did the 30 day round of Amoxil and has been fine. A little fatigue but thats it. She had Strep 1/4/11. was put on Amoxil 875 BID. She felt awful for 2 weeks. Do you think she could of had a Herx. reaction to the Amoxil? Her pedi has now put her on Pen V K 500 TID. for 10 days. She started that 1/15/11 and is feeling better. Any thoughts would be great. Thanks!

Is it common for the school grades to drop in PANDAS kids? My DD9 has been an A student all along till now. She is struggling with all subjects. Simple things she could do last year she can't this year. She gets so upset now when its time for homework. Has anyone else gone throught this and if so what can I do?

my DD9 has been a PCN 250 mg twice a day since June to prevent strep. That order came from the Infectious doctor. She hasn't had strep or any other illness since the start. It took awhile to work on the PANDAS part but she is doing very well now. We saw a major change in October. She is also on Zoloft and Tanex.

I'm with you on this. Good question. We have no infection so why not back to normal? My DD9 has tics and some seperation anxiety still.

Hi, I am usually on the PANDAS site but I have a question for this site. My DD9 has PANDAS. She was just diagnosed with ADHD also. Her Neuro put her on Guanfacine. I think that is the generic for Intuiv. HAs anyone used this before? She is taking 1/2 pill for 5 days then she is to up it to 1/2 pill twice a day. So I am looking for any information I can get. Opinions on it, side effects anything. Thanks for your help.

How do I quickly and simply tell the Aunt that we see once a year about PANDAS? Holidays are here and people will be asking what has happened to DD9 since last year. Oh love the long distant family.....Since this is my first Holiday with this I don't know what to tell them in a quick way. Any ideas?

Wow, you need a hug,pat on the back and yes a glass of wine I am on Welbutrin and Xanax. That works for me. I can stay focused and have a ton of energy! My DD9 has been doing well untill tonight. Her cheeks bright red and all her symptoms in full force. I can't figure out what set her off. UGH..All can do is laugh at the mess and hug the kids. Kari

So I need letters from her doctors to support the PANDAS to show to the board? I have no idea what I am in for with this. From the research I did here, it seems like a hard battle.Ugh,why can't 1 thing be easy for us?

I was able to get our Neuro to give us the note for a 504 plan. But she put on it for ADHD which was diagnosed today. So do I need another one for the PANDAS? She wasn't willing to put it on there.

Can you have Lyme and not have any physical symptoms? If on PCN for PANDAS can that interfere with the lab results when testing for Lyme? My mom swears that my DD9 has Lyme. But she has no symptoms of it. I had Lyme as a child and remember feeling very sick from it. My DD can run laps around the house.

No we haven't used one. What do you suggest? Toda she only has pain. No loose stool or vomiting.

thats what i am wishing for... but she is on Pen V K since June so I hope its not C Diff. I don't know much about that but it is a worry.

DC mom, my dd does seem ok right now. I hope its not starting with another episode. she is doing so well. but she is clinging to her bear and blanket. she is a good actress. so its hard to know when she is in real pain. this behavior is new to me and that is frightening. I told her that I called her Pedi. and that seemed to calm her down a bit. I don't know what to do.

Ok so my DD9 started with stomach pain and on and off diarrhea. she can't get comfortable. it hurts under her belly button. She also is starting with separation anxiety. What is going on? we were doing so well. I thought bladder infection but no pain there. She can hop up and down so no apendix trouble. any thoughts?

so what blood tests should I ask for? Lyme western blot is neg. so far. cbc normal aso up, all igg igm iga ige normal. sed rate normal. anti d nase normal. what else is there? ugh so not happy.

I'm in with you wonderful mothers and fathers here. Thank you for all the input. This fourm is a life saver for my family.

That does stink. I didn't know that you can get a strep infection on the skin. This is very interesting my younger daughter has a pimple like rash in her diaper area since she was a few months old. It starts as one then spreade out of control. She goes on ABX. and in a few days its better. but then comes back in a few months. Now I wonder if its strep related? How would they test for that? The rash did test + for staph once. I hope you feel better soon. Kari

When you want to make tee shirts about PANDAS awareness. I loved and agreed with all the replys so far.

Thanks for all the tips!!

I was on the Saving Sammy web site and saw they had a kit you can buy. It's called Back to Health Tool Kit. Has anyone bought this? Is it worth getting?

I really don't know. We are new to this and the Pen V K is the only antibiotic she can take for the PSRA so we really haven't tried anything else. This started in April and in October we saw an improvement. She also started Zoloft which I think has made a HUGE difference in her. So Is it the Zoloft or is The Pen V K working? I don't know. I am scared to stop it though. Dr. T is the only doc in NJ I have found. My husband and I both work full time and we have 2 other children so going out of state is not an option right now. My ID had mentioned the plasma exchange but said it doesn't work that well. Today she is doing ok. I know she has been exposed to strep in school and she has not reacted to it. Yet. She has Tics and slight OCD also some rages but not bad. Her teacher has suggested a 504 plan for her. She is a A student still thoughout all this. Wow I am rambling... ok so I really don't know if it is working or if the Zoloft is working but one of them is and that makes me a happy mama!

So it occured to me that i will need to find a PANDAS doctor soon. In 6 months my DD9 will be taken off her Pen V K. She was put on the for Post Streptoccal Reactive Arthritis. A few days later The PANDAS struck. So she is only on the Pen V K for the PSRA not the PANDAS. Her pedi and Infectious Disease doc are not helping to much with the PANDAS. So has anyone gone to Dr. Trifietti in NJ?