Betsy

I am new to this forum and so many of you have been very helpful and encouraging. Thank you! I just got off the phone with one of the doctors helping us with our little three year old. He thinks that she is just incredibly strong-willed and may have some OCD tendencies and is suggesting that we just meet with a Ped Psychiatrist and learn some parenting strategies. I still haven't heard back on her bloodwork and strep culture, so I don't know how that will go there. But do all PANDAS kids have tics? Looking back, can any parents here see signs of PANDAS before tics may have developed? She shows everything but tics and decreased motor skills. I would love to be wrong about this, but these are NOT normal fits to my eyes, and I've been with my little one every day at home since she was born. I KNOW her! She's having anxiety, OCD, fears of dying, fears of being in another room from me, fears of leaving home, trouble falling asleep, and such frustration, can't even let us dress her! Would welcome anyone's perspective. I know hindsight is always 20/20, so if you have any experiences before you realized PANDAS, and would not mind sharing, thank you. I am not too proud to be wrong, but if I'm going the right direction ealy, I want to be sure to keep pursuing.

So, probably an obvious question and concern, but isn't it potentially dangerous to be on an antibiotic continually? What if I get my little one on Zithromax or Augmentin or whatever and then she has a horrible staph infection? My husband is just hearing me tell what I am reading on here and he's so worried about that. He doesn't have time to do as much research as I do, and I'm probably not doing the very best job explaining all of this, alot to take in! What can I tell him about the preventative use of antibiotics?

Okay, so my pediatrician seems willing to work with us on all of this. I'm planning on taking my daughter in this afternoon for the strep test, will make sure they culture it. I guess he'll know how to test for strep in vagina, anus, skin, and how would you check gut? She has ALWAYS had very soft bowels. Right now she does have some redness on her hands and her buttox cheeks. I'm not sure he's going to know how to check that really. Any advice there? He's never dealt with anything like this, gonna try to find a doctor in Houston that may have seen more. Still working with original pedi in the meantime, so we'll get him to check for ASO and ANTI-Dnase B? Will he know what that is? I'll get our baby swabbed for strep too, but I guess my husband and I will have to go to our own PCP... She's not on ANYTHING now, hasn't taken Singulair since summer. Her behaviors began two days after starting the Amoxicillin and Benadryl this time when she had her first ear infection in almost two years. Only other infections would be pink eye, and a bladder infection, but she got tubes when younger because of fluid staying even in between ear infections. Her behaviors are difficult to explain. She's such a little extravert that that's still trumping for her most of the time out in public and with friends, so she seems pretty normal to my friends. But she'll crash SO hard with us, husband and I have to force her together into her carseat to go home, or she'll pull me around the house begging to go back somewhere. She'll scream, cry, act so anxious, be confused about what she wants because nothing makes her feel better, throw huge fits about clothes (has worn basically two outfits for the last week), refuses to wash hands, bedtime is so rough, I almost can't manage her alone. And this is not her! She's strong-willed for sure, but sweet, polite, and responsive to parenting generally. She also is now concerned with tidiness, my sleeves being even, what I'm wearing, making sure baby doesn't crawl toward her toys, etc, chewing on her hair some, repeating some things more than average. She's always been pretty bossy, but now, she gets much more upset if you don't do something she had a certain way in her mind. Her pupils are often dialated. The behaviors are not all the time, she's doing some happy solo-play right now. But it's under there all day every day right now, and you never know when it's going to rear it's ugly head. I just want to make sure that we do everything necessary this time. We didn't get any tests, or blood numbers, or documentation this past summer. Just took her off Singulair and rode out the storm. I'm hunkered down for another week or two like this, but don't want to miss the opportunity to learn whatever we need to while still in the episode. Especially if she may have an active infection that we still don't know about. And she just started preschool, ugh. Thanks again for any tips and encouragement.

Hello all. I am thankful to find this site. I stayed up late last night and have been online off and on all day today, because I think my three year old may have PANDAS or PITAND. That looks so plain and simple in black type, but I'm so concerned. She had a horrible three week episode this past summer that we attributed to Singulair, but she recently got her first real cold since then, along with an ear infection, and did a round of Amoxicillin. The behaviors came back! We thought she was having a reaction to the Amoxicillin or to Benadryl or to the dye in the antibiotic, but after reading so many of your stories, I think she must have PANDAS! It's like reading about my own life on this forum and the other sites I've seen that describe episodes. Down to the way her pupils look, and the anxiety she's having! We have not confirmed a strep infection; she's never even had a sore throat... What do I do? What tests does my pediatrician need to run? Do I need to see a neurologist, psychiatrist (would rather not), do we all need to get tested for strep? I have recurrent sore throats but haven't tested positive for strep throat since I was little; could I be the carrier? (Mommy guilt, always has to be our fault we think...) I have an infant, will he be prone to this too? So many questions, so many fears, where should I start? We're going to have to live from one cold to the next, one childhood illness to the next? Help! Such a beautiful, verbal, sweet, polite little three year old! Standing beside me in a princess "wedding dress" asking me who will be her prince charming, having a good moment, as I write this. Truly a gem! Want to protect her from everything... Oh, God!