saidie10

So here is my question. My first son meets all the criteria for a diagnosis (we just need someone else to see it now). And now I am convinced that my second son who had strep last week could now possibly meet the criteria as well. My question is this; are most of the PANDAS kids on here PANDAS kids from strep that went untreated (they were asymptomatic or you never knew they had it), or was your child or children treated for every strep infection you *knew* about? Both of my children who had lots of seasonal allergy issues, many, many ear infections and many strep infections, were always treated with a course of antibiotics for every positive culture we had. Sometimes we had to change antibiotics to get all symptoms to clear (we NEVER checked to make sure culture was negative after course of antibiotics though). Are they *luckier* in terms of recovery because of this or at this point are the wheels set in motion and catching strep again or even exposure (and apparently exposure to other illnesses too) will trigger exacerbation. I truly hope me asking whether they are luckier doesn't sound bad (because NONE of these kids are lucky by any means), it's just that sometimes I feel guilty on here when I see so many of your children are suffering so much more than mine and I tell myself I shouldn't be so freaked out about mine, look at what some other children and families are going through...my heart truly goes out to all of you and your kids who are suffering. I do think if my son was not on zoloft for OCD things would be much worse, especially this week during his brothers recent infection since he did have an exacerbation, but I know the zoloft is helping him. Do I want him on it, ABSOLUTELY NOT! I want him off of it!!! Just be honest with me people. I can handle it the truth!!!

Thanks guys for all the responses. Well pedi appt went as we thought. She would love to help but because of exactly what I said below and what was in the parents article published recently, there is a standard of care to follow and because of the American Pediatrics Association and the NIMH, etc. etc. etc. she is not even willing to consult with a specialist in PANDAS who is willing to try the treatments. SO, we are off on another road. We do have an appt. scheduled for both boys with a Neurologist in Houston on May 25th. Hopefully I will be able to confirm before I go that he is an "outside of the box" thinker. I also have calls and faxes out to an Immunologist in Dallas along with an Infectious Disease Doctor, and to Dr. Stewart in Austin as well. Thank you guys so much for the contacts. I plan on sending my 3 page overview to Dr. K on Monday and we are seriously thinking about at least a phone consult and going from there. Been a long exhausting week but DS5 is MUCH better today thank goodness.

thank you so much for sharing your inspiring story! mom's perseverance always pays off. we continue to fight for our kids and we can feel the payoff one day

GREAT article! Thank you so much for sharing this!!!

So, i spent all day on the phone and fax yesterday. Hoped we would get in to see Immunologist at TX Childrens. Sent three page fax to his Nurse for him to review, spent twenty minutes on the phone registering them in order to get an appointment and the kicker at the end, "our next available new patient appt is on April 11, 2011!" LMAO! then the nice phone center operator said now let me have your email address so we can send you reminders of your appt date and time. LMAO. then the nice phone center operator said i will also send a link for directions and parking information and valet parking is about $16.00 but it might be higher next year." LMAO again. The nicest thing after all of this was though that the doctor personally called me right after he read the fax. So, the man who's waiting list is a year for a new patient appt. can call a worried mom and express his sympathy and concern and i can't even get my son's current Neurologist to call me back. UNFREAKING BELIEVABLE. Saddest part of the day though is this man was so wonderful and talked with me for while, but he can't help the boys. His hands are tied he said. He said that Hospital guidelines dictate he goes by the NIMH and APA guidelines for treating "PANDAS". They only treat the neurological symptoms (OCS and tics with proper medication). We talked for a while and I could tell he wished he could help us. Oh well. Glad I will get a reminder so I can cancel my appointment next year! Guess we will definitely have better luck with someone in private practice who has a little more flexibility to think outside the box. We do have an appt scheduled with the first Neurologist we saw for my oldest over a year ago on May 25th. I will be calling them today to make sure they don't bother calling in a referral for the TX Children's to try and get me in faster. I will also make sure that the Doctor does and is willing to treat with Antibiotic if necessary before going to that appt. So going to Pedi today to see what she thinks. I believe these are my options. WWYD? 1. See Pedi and/or Immunologist in Dallas who based on my information are seeing and treating PANDAS 2. Phone consult with Dr. K or Dr. B or Dr. L. (Dr. T has yet to return my email or phone message) 3. Wait and see what this other Neurologist does Any advice appreciated.

i wish i had answers for you but i am still looking for my own for initial treatment, not recurrent. i hope some of these fine parents can lead you in the right direction. good luck.

this makes my heart ache for how you are feeling right now . i think the other folks have put some really great advice on here and i concur. guilt can be a horrible feeling but NOW you can embrace the fact that you have some answers and you can find tools to help. you guys will get through this. turn the guilt into fight and use your mommy super powers to help your son and he will thank you in the end.

thanks for the responses. he is not on any medication. i believe we are in our first onset of PANDAS with him since his positive strep infection last Tuesday. the last two nights he has awoken with bad dreams and been able to go right back to sleep once Mommy goes in. however i definitely worry it will get worse quickly as new things are showing up every day. spent all day on phone and sending faxes...trying to get into an Immunologist in Houston ASAP. I posted this on another thread but for those of you using Tagamet, do be aware that strange pre-sleep hallucinatory type "dreams" can be a side effect in some people my son had this some years ago and it was very alarming, till a pharmacist friend told me of this tagemaet side effect. he was on Tagamet at the time to help Crohn's symptoms stopped the tagamet and the ick "dreams" ceased immediately

Yes he does. Call and speak with Stella. I have not done a phone consult but they do them. Good luck.

Trying to be on top of it. Thanks for the support. Immunologist in Houston at TX Children's first available appointment of new patients is 4/11/11...yes, that is 4/11/11. So, I have Pediatrician, and two Neurologists we have seen calling in referrals hopefully in order to expedite things.

amazing! sorry your little go is having it rough, but sounds like you have a good support there!

mom here in panic and crisis mode. my ds5 will be seeing somebody before the end of this week. in don't care where i have to go or what i have to do. ds7 whom all of this started with is ticcing more, seeing some different OCD coming out with him. oh but doctors who don't believe, i guess this is all just a coincidence that ds5 tested positive for strep a week ago.

Have her swabbed for strep! my DS5 last Tuesday went in with a raging ear infection and low grade fever for two days. pedi said the throat was a little red and i told her to swab it for strep (she was not going to because the throat did not look like strep) and i knew we were seeing an increase in symptoms the previous days before with suspected PANDAS son and low and behold, the swab came back positive for strep!

doctor called me tonight and is reviewing all the stuff i dropped off. she was very kind as she has always been. she is curious and wants to learn, but obviously admits she is no expert and does not know enough about PANDAS to diagnose or treat my son(s). we are trying to get into see an Immunologist at Texas Children's Hospital in Houston. the pedi said that is the place to go for cutting edge research and technology if you are in Texas so she is calling tomorrow to express the sense of urgency in getting them seen as soon as possible. this doctor has said he has/is seeing/treating PANDAS so we will see. Dr. Javier Chinen is his name, Pediatric Immunologist. following up with pedi friday afternoon in person. WHAT WOULD I DO WITHOUT THIS FORUM AND ALL YOU WONDERFUL MOMS AND DADS? THANK YOU, THANK YOU, THANK YOU! Will keep you guys posted.

you guys got cameras in my house or something! it is comforting to know i am not alone. there was a shift today. when i came home bawling from the pedis office he was very concerned. then the best thing (since he has been gone working and not been home a lot since DS5 got sick) today after school he got to see, i mean really see what i have seen over the last few days and he spent the better part of the evening staring into space. i gave him some space and then asked him what was wrong...i said you are worried aren't you, and he said yes. i started crying. i feel sorry for him. he has spent the last year and half just hoping our oldest would get back to normal because i know he has been terrified inside but rarely shows his feelings. and now this with the younger one. it is a hard blow to a man to see any child go through this. i will continue to be the knowledge seeker and appointment maker and he can continue to be my soft place to fall. that is fine, that is reality and that is my life and i do love it.

you know I actually rried it sunday and looking back that was the one day in the last 5 where he seemed kind of normal until that evening when it wore off I guess. I am stsrting that regularly!

No i didn't have an appointment. i really just wanted to show her all my stuff and say hey, if you are not willing to give them antibiotic to just try it, please, please, please use your connections and find me someone who is willing to really see if this is what is going on with them, really take the time and really willing to treat when they find out it is! i figured that her calling some of these doctors that I am curious about would be better than me. they won't even talk to me but as common courtesy, doctor to doctor, I figure they would talk to her. i was so dumbfounded over the "well she has to eat and stuff" comment I just stormed out of there. _________________ OK...here is the latest...just got off the phone with the nurse who sounded very concerned and sensitive to my plight. She called to tell me that Dr. M definitely wants to give me the time I need as she reviewed the charts and knows what we are possible dealing with. She scheduled me an appointment for Friday at 4:30 and the Nurse also said she will call me at the end of the day today. So, I feel a little better. I think once the Nurse told her I stormed out and was crying Dr. M said hey, this is the Mom who is very worried about her kids and I need to help her, so we will see. So now off to try and have some sort of resemblance of a normal day

omg...if you could feel how wet my phone is through these tears...the nurse tells me as I stand there crying..."she is booked all day can you make an appt for friday? I said no I need to see her I need help I have no one." she says " well maybe she can call you during her lunch break and I say can I see her during her lunch break? and she says as I stand there crying no she has to eay and stuff! wtf! I just stormed out. where the ###### do I go now?

got notes in hane...handwriting before and after samples...pictures of wide eyed 5 year old and more proof I am not crazy. nobody better mess with this momma today! I got a speeding ticket and the cop this morning got a real ###### chewing LOL. especially once I got to school and another mom who didn't look like she rolled out of bed was going faster than me and got pulled over too and did not get a ticket. I went and tracked that officer down and chewed him out! damn that made me feel better!!!! wish me luck...i will wait all day if I have to.

Thank you to my amazing new friends your responses touched me and made me feel MUCH LESS alone in this long and scary road. I have awakened this morning with a great sense of purpose. I will have doctors appointments today scheduled with someone...it's between the Neurologist in Houston and an Infectious Disease Doctor in Austin. Both have said they will treat PANDAS. Just which one is the right one is yet to be determined. WOW, again, you guys on this wonderful board have made me feel much, much better! THANK YOU

Part of me says keep telling yourself 3 more weeks...3 more weeks...3 more weeks, but the other part of me says you should rip her a new one! 3 more weeks though and thankfully no more of her! If she is inflexible and has not listened all year, chances are you will get blank stares and non interest. She is not worth it. Unfortunately but hopefully not, there will be more naysayers and non listeners that come along as well. Navigating the public school system can be so difficult when you have a child that needs special care. It is a shame that the ones who suffer are the ones who are supposed to be in an environment that is supposed to nurture them.

Thanks guys! I am so glad I found this board. I learned the value of a good support group when I was trying to get pregnant with these little boys. I spent 3 years on Fertilethoughts.com visiting and learning and making friends...sharing stories of joy and heartache. THANK GOD I found that and THANK GOD I found this. Guys, I and couldn't agree with you more about the importance of both the roles DH and I play even with them being entirely different to some degree. The thing that just frustrated me the most tonight was when he said that we weren't going from doctor to doctor to doctor and I had to try and make him understand that we may not have a choice. He just doesn't understand that there are not many doctors aggressively and appropriately treating this. I thought about doing the Cunningham test too and got information from someone very nice from this board today. I knew you guys would help pull me up tonight. Thanks

This has been a rough few days...sorry for all the posts. I am just sitting here crying, worrying about my children. I feel at this moment that I am the only one worried about them. DH is supportive of what I think we should be doing, but at the same time he looks at me kind of like I am crazy when I tell him all the stuff I am learning. Tell me, do you feel like the only parent spending hours on end on the computer researching and reading and making phone calls? I feel like I am all consumed with this and although I would go to the ends of the earth for my boys, it would be nice if my DH was on the same trip with me. I am tired of hearing whatever you think we should do when I want to here, "let me read that...I found this out and that out..."and I want him to be as curious and knowledge seeking as I am. I have a wonderful DH who would do anything for his boys. I just want him to know and really understand more about what may be happening with them. He is stuck on thinking that if we just find them someone to put them on Antibiotics they will be cured and he doesn't understand it is not as easy as that and can and will likely be way more complicated. Anyway, just needed another vent. Feeling better already.

HOLY COW...I mean DOG!

Welcome and you have come to the right place for help. I am new too and the stuff I have learned and the support given has been overwhelming! Hope you get some help for little ones