saidie10

This is unbelievable! So sorry your DD and your family are going through this. I can not believe the measures they want to take. What a crock! Oh let's basically punish her for something she can't control! Glad you have a place to vent and hope someone can knock some sense into them!!!!

So DS5 whom has not even been on the radar for PANDAS had strep in February and started with some finger tics and nail biting. Watched him closely of course because of DS7 and what we are going through with him for the last year and a half. So, DS5 tested + for step a week ago today and the last few days he has been wild eyed, temper tantrums, just quite delirious off and on. Lots of finger tics that have moved to his wrists and ankles and toes. Some separation anxiety and OC thoughts and comments. I had heard about the wide pupils but coudn't remember if I had seen them with my DS7 last year when I would say his initial onset was (we weren't thinking it was PANDAS at that time), but after bath tonight I about freaked when I saw my DS5's eyes. I attached pictures. Same light, same place, completely different dilation. FREAKED ME OUT! This HAS to be what people talk about with the wide pupils. The pictures don't even do it justice! Wish I could post them but my link does not work!

Hi! Melanie if you are out there, I need the names of those two PANDAS friendly Doctors you talked about in Austin ASAP. After my phone conversation with my sons Nurse this morning, it is clear his current Neurologist is not the doctor for him. I had sent an email yesterday to the Nurse to relay to the Doctor and was told all discussions regarding patients would be done over the phone. WTF? I was not asking her to respond to my email with an email, I just didn't feel like waiting on the damn Nurses line on hold forever so I emailed my questions to the Nurse to pass on to the Doctor. So the doctor will not order bloodwork for my second son until he is an established patient and I of course am welcome to schedule him an appointment. AND she didn't have the Nurse mention anything about my son's labwork on the Anti-DNase B results but I am welcome to try and move his appointment up from June 7th if I want too. The Nurse read the message from the Doctor word for word and I could tell the Nurse was uncomfortable because she knew I would be mad at the response. Well she was right. I will be ordering all my son's records and I need to schedule him an appointment with another Doctor ASAP. He is on SSRI for OCD and he only has about 3 weeks left and no refills unless I see the Doctor and I am not bringing him back to her. ANY HELP WOULD BE GREATLY APPRECIATED!

So happy for you and your boys good results so far! What great news and I will send some positive thoughts your way in the hopes they continue to improve!!!

I am sure this is a scary time for you and your family. I would ABSOLUTELY test his titers because although you don't think he has ever had strep, his blood could show elevated titers. Don't stop until you have ruled out EVERYTHING...for your son and your family's peace mind. Good luck and I hope you find the answers here and elsewhere that you are looking for.

this is sad and frustrating...i am so sorry . i hope this new doctor will be the light at the end of the tunnel for you guys.

Oh I will be moving on! The Neurologist cares so much that she didn't even call me today with the results. I found out at 10:30 this morning from the Nurse the results and still no call from the Doctor. She knows how concerned I am and how much I wanted these results. I figures she would call and gloat to some degree that it had dropped. Well we will be dropping her! Fixit and dcmom are right. Changing ASO and Anti-DNase-B tests provide clues to the body's reaction to coming and going Strep infections. When paired up with coming and going PANDAS exacerbations, they indicate a possible association between Strep infection and PANDAS. However, a child can have high ASO and Anti-DNase-B titers and no PANDAS -- or, conversely, perfectly normal ASO and Anti-DNase B titers and severe PANDAS -- particularly if the child has been suffering from PANDAS for a long time. Strep (which causes the body to make anti-Strep antibodies) can set distinct autoimmune processess (involving anti-neuronal antibodies) in motion, but these autoimmune processes then take on a life independent of Strep, and other things (allergies, colds, vaccinations) may then prompt the autoimmune processes to wreak havoc in the brain. Unfortunately, there seem to be lots of doctors out there -- even some doctors who claim to be PANDAS experts -- who don't understand this. If you have a child with PANDAS, and your doctor doesn't get this distinction and you are unable to enlighten him/her -- my advice is: MOVE ON!

awesome, awesome, awesome!!!!!!!!!! you definitely needed that! these stories are so heartbreaking and my heart goes out to each of you

:( :( my mantra of the moment "this is not the end, this is not the end, this is not the end....." DS7's Anti-DNase B came back at 314, down from 561 six weeks ago. we tested it because I saw a clear exacerbation (albeit not freaky bad but definitely different) in what I think was response to his brothers strep infection. i REALLY REALLY wanted his number to be elevated (ASO was 400 six weeks ago and 400 with this set so no change there, but Anti-DNase B went down) the nurse told me and i am still waiting for the neurologist to call. i am dreading this phone call because i think she will be basically like well that is it, is is not PANDAS. i have to remember she is not a specialist when it comes to this and time and time again i have read that titers don't have to go up so..."this is not the end, this is not the end, this is not the end..."

you didn't hijack my post girl! i appreciate the input and glad i am not alone!!!! glad you had an opportunity to vent and so sorry your Mothers Day was crappy, and VERY sorry for why it was. people can be extremely insensitive!!!

thank you guys so much for cheering me up this morning. this board is my new lifeline! i am waiting to hear from the neurologist about at least doing initial ASO and Anti-DNase B on my younger son who I am now worried about. i think she thinks I am crazy too we are also waiting to hear from Dr. T about a phone consult. anyway, this was like writing that email or letter and being able to get it out without having to battle it out with the person who really needs to hear it. i also posted on my Facebook status something along the lines of this as well so I know my SIL will see it and she tells my MIL everything so I am confident it will get relayed! LOL my parents are very supportive, but DH's parents who are very supportive and amazing are definitely struggling with my new concerns over younger DS. he has always been my temper tantrum thrower but this is DIFFERENT AND SOMETHING IS NOT RIGHT! as you guys said so perfectly, MOM KNOWS BEST!!!!!

thanks for letting me vent. just writing and saying this to myself helps me cope right now. "do not doubt the perseverance of a mother to fight for her child. i will not sit idle and assume that ANYTHING is just regular childhood antics or behavior when I believe in my heart there are underlying issues. I WILL NOT DISCIPLINE MY CHILDREN for something I am not sure they can control. I WILL SHOW SYMPATHY AND LOVE until i have the answers." ME - MOM, the one who gave birth to them, the PARENT, the one in charge of discipline and everything else! the one who does not stop thinking about the two loving boys who are just struggling right now.

I am sure not a coincidence at all! I think some cases are just too obvious to ignore yet they do get ignored...so frustrating!

So sorry your son is suffering right now and your family too. Sending positive thoughts your way and hoping he gets back to that good place again soon.

So sad to hear sending positive thoughts your way.

your inbox is full! trying to pm you

Yes, sorry RF, not RH!

This is an interesting topic because we are convinced we need to not only be focused on figuring out what is going on with DS7, but also now DS5. He was psychotic yesterday. I gave him motrin this morning as recommended by a few on this forum and seemed to have a better day but later in the early afternoon he had a meltdown in front of some family. Of course after he left the room they had to put in their two cents about what we need to do to discipline, etc. They just don't understand, nobody understands. A quote from this thread..."How many children are getting written off as bad, difficult or naughty when really they're just ill?" I truly think my DS can not help the extreme behavior we have seen in the last few days! Problem is he has always been my temper tantrum thrower so to everyone else, this is nothing new. But to me...his Mom, who knows him better than anyone else, he is suffering just like his brother is and these extreme outbursts are just like his brothers last year that everyone was very sensitive too because he was the kid that never threw tantrums to he definitely must be sick. Anyway, I couldn't agree more that Mom knows best and if you suspect another child, cousin, etc, get them tested! Good luck! agreed. I also believe that there are kids with strictly mood issues, anxiety, or ADHD (or other diagnosis) but no obvious tics/ocd that have pandas.

Sorry your son is getting sick! That stinks, especially with such a big day planned tomorrow. I hope they still go through with it. Keep us posted and good luck!

Melatonin is highly recommended by our family! DS7 would take some 2-3 hours to fall asleep before we started using it. The first night we used it I gave it to him at 7:30 and thirty minutes later he told us he was ready to go to bed. We were floored! We give him the chewable from a local healthfoods store. They are 1mg tabs and we cut that in half so he takes a very small dose. He is little though, only 40 pounds at 7. Good luck...I think you will be very happy with the results. We have seen no negative effects at all. If he is really tired and we skip the melatonin he can eventually fall asleep on his own but it just takes a little longer. 3

sorry for so many posts but discussions with my parents today have me on a roll! turns out that not only did my Dad and DH's Dad have RH as a children, but my Dad's Dad had it too! NO history of Tourrettes or anyone diagnosed with OCD, but three close relatives with post strep disorders! come on doctors! the signs are all there...what are we waiting for?! the PANDAS symptoms on the webpediatrics.com website that i just found (which I am sure many of you have seen as it is Dr. K's site) reads like a journal for my kid and possibly kids! why can't I just go to any reputable doctor and get help for this OBVIOUS condition. just really frustrated today...thanks for allowing me to vent!

This is a very interesting article! Thanks for sharing. Unbelievable to me that there are still physicians who don't buy into the fact that infection can cause neurological issues!

Hi everyone. I am heartbroken today. DS5 who has had some funny finger movements since his last strep infection in February is acting so psychotic the last two days. He also tested positive for strep this past Tuesday and he is like Dr. Jekyl and Mr. Hyde for the last two days. He won't let me out of his sight, he even wants me to go to the restroom with him every time he goes which he has NEVER asked me to do. We are at my Mom and Dad's for Mothers Day and I was going for a run this morning and he did not want me to go and even asked me if Nana and Pops knew how to get to our house in San Marcos and I said why? and he said in case you don't come home. He is angry and frustrated and throwing outrageous fits. I am really beside myself and more concerned about him right now than I am about DS7 who we have been trying to get a diagnosis on. I think I need to get him in for testing now. Would it be more likely for DS5 to also have PANDAS than to not have PANDAS if his brother does?

so sorry you are feeling sad/worried/confused today! i hope some of the others on the board have some good answers for you today to ease your mind. i am so new i don't even know what the Cunningham test is or what Cam Kinase II is! i am learning so much on this board though so I am sure someone can offer some good advise!

Hi! I am in San Marcos and have been looking for Doctors in Texas too. We are currently seeing a Neurologist in Austin. Still not sure if we are in the right place I did contact the first Neurologist we saw in San Antonio over a year ago who has since moved his practice to Houston. A large majority of the Tourrettes Group parents from San Antonio swear by this doctor for their kids. His name is Dr. Joshua Rotenberg. I contacted his office in Houston just a few days ago and asked his nurse if he was treating any PANDAS patients. She called me back and said yes and bring our son and he will try and help him. We are thinking about it. Good luck and let us know where you end up!