ajcire

Aww, Susan. I don't know anything about it as a side effect but my ds gets nose bleeds all the time to the point of where he doesn't even tell me half the time (I keep telling him I want to know no matter what). I get calls from the school nurse telling me when he has one at school just so I know. If it's ever a really bleeding we find that if he puts pressure under his top lip on his gum in the front that it stops it fairly fast. I actually give him rolled up cardboard to use to put pressure and make him keep one his coat pocket in case it happens on the bus. His is not due to medications.. not sure why he gets them so often but the dr. told me he's not worried. I of course worry because I am his mom. Funny thing was I almost asked here just on the off chance it was a pandas thing. He's gotten them since he was really little.

I feel like my son's kind of comes and goes even when not on antibiotics but that regardless even on antibiotics that there is something pandas about him all the time.. I can't really explain what I mean by there is something pandas about him to anyone except maybe to another parent of a pandas kid.. so much of pandas is now easily confused with his personality... like his quirks and what not. Not sure if that is what you meant or not.

Oh goodness That sounds awful to have go through. I have no ideas but couldn't read that without offering some hugs.

Vickie, not sure why I didn't think to maybe try advil with my dd while I am trying to figure things out! Glad you mentioned the advil again!

Oh, I know Vickie, I think it is a good suggestion and certainly something easy enough for me to try and can only help.. can't really hurt to try to keep her better hydrated. LOL, I will remember not to freak if she starts using the bathroom more though

You know what Vickie, she is not a big drinker. I am going to pay attention to this and try to make sure to have her drink more during the day.... although yesterdays seemed like a possible leg cramp.. during her meltdowns it was stranger... like she just kept saying she couldn't walk and it hurt if anything touched her feet and legs.

Susan, she was last tested for strep about 2 weeks ago.. the ped that I see from my ped office is great as far as doing any strep tests/cultrues I want and he believes in pandas but referred me to another dr. saying it was just out of his realm. That dr. I saw for my son but he stopped taking insurance so I haven't gone back. I didn't feel like he was going to help me as much as a visit with Dr. T so I decided that if it will cost me that I would rather see Dr. T. I don't think my ped will be willing to do a trial of antibiotics but he is the one who just did bloodwork for me on my dd to try to figure this out.. he was the one who was also happy to do the blooddraw for my son for the cunningham test. My dd is still saying her mouth/throat hurts sometimes but I really don't know what to do. I have had her cultured sooooo many times over the last few months and the last several have been negative. She did have strep early september and the end of october. I hate that I don't know anymore what really hurts her and what has become a habit to say. It used to be that every time she said her throat hurt she had strep. This is also my child who always has tummyaches. My pandas son never gets sore throats when he has strep. The real problem is that I really was seeing Dr. T for my son. It took a lot for me to convince my dh of the need for this despite him not being on our insurance. My dh thinks my dd's issues are just normal kid behaviors and he has not witnessed the severe leg pain episodes. It sounds awful but I think I need her to develop some tics and obvious ocd before he would be convinced. It took me a long time to get him to sorta see it in my ds and the cunningham test was kinda the clincher for me with him. I can't get him to go for the $400.00 test on my dd that he thinks is just fine. Will you remind me, has she been tested for strep? It really sounds like my dd's pain. I swear I did not believe her for years that it hurt it was just too crazy. Shoot I can't wait for you to go see Dr. T! Would your local doc do a trial of antibiotics for her even if the strep test came back negative? If not, maybe Dr. T would. From what you have been saying, it seems to me like a trial would benefit you guys. Susan

I have asked her but she isn't really explaining it. Yesterday we were outside playing in the snow and for the first time when not in a meltdown she grabbed her leg and started crying hysterical... she looked like when you get one of those bad leg cramps... but when I asked her if that was the same way her legs hurt her the other day she kinda looked at me funny and said she didn't think so. So not sure if the episode yesterday was the same or not or if that really was just a muscle pull yesterday. All of a sudden she was just fine again and never mentioned it again.

So glad that you are seeing some changes and that you found such an incredible immunologist despite having to travel to find him.

I do think it would be a great help to have people do this on a smaller scale then books and large newscasts... local reports in local papers would surely catch peoples attention. People they know, in their community makes it more real. You have some truly incredible neighbors/friends.

I don't know about your insurance but I kept my regular ped but still went to a different one who was familiar with pandas. The one I went to was a holistic pediatrician and he treated with antibiotics.. said that he was not an antibiotic pusher but in the case of pandas it really was necessary.. I had to leave him when he stopped taking insurance though.. I only saw him regarding pandas. I continued with my regular ped for all other medical stuff.

I just sent sent her a write up of his history the best that I could remember. I did ask my dr. to give me the dates of documented strep just so that I could write it up accurately.

I agree about the ABA... that it is good for things that they can actually control but if something has taken them over and it's out of their hands.... Before I got my teaching job I was an assistant in an ABA run class. I had mixed feelings on it but it definitely served a purpose with the kids I was working with..they were 4-5. In my particular case with the behaviors I am dealing with I don't think there is any way ABA would work for us. A meltdown for us is a meltdown and there is just no working with it. When I got my teaching position it was for much older kids. I didn't use ABA formally but sure it came in handy at times and I indirectly find myself using it with my 2 year old at times as well.

Smarty, I'm not really sure what it is but definitely when I have dh home there is more individual attention to be spread amongst my kids and often we are doing more. I'm probably less stressed and react differently when I am not alone with them too. I am going to try to give her less idle time. She does better with the one on one attention but I just can't always do that as much as I would love to.

Thanks Susan. I can tell I am being repetitive in my questions though. I guess I am hoping some big giant sign comes out of the air to tell me if this is pandas or not for her. I know you are worried but I am glad you are asking the questions now. I know he can give you some insight into your dd. It was hard for me to realize how often I had ignored and blown off my dd's pain but you just never think that a kid would have pain like that. I hope it turns out to be a phase or growin pains, etc. But I do see why your ears are perking up about this. Susan

Thanks Susan, I am going to ask Dr. T about my dd when I take my son to see him in a couple of weeks. I have a bad feeling that by time I am done I will be paying for a visit for 2 kids instead of 1.

Wow Peg, that must have been very frustrating. I hate to not believe her if it really is hurting her but I am just finding it so hard to believe that it is really hurting.. it is only when she is in full meltdown mode that she is saying it. The meltdown doesn't start with her saying anything hurts.. it starts with her getting upset about something silly. She still says her throat hurts often and the dr. has checked and keeps saying it's fine, cultures come back fine too. My mom thinks it has just become a habit and to tell her that the dr. says she is fine but I won't do that because what if it really hurts... I just don't know what to do with a non red, non strep throat. She gets strep often but this time it doesn't seem to be it. 2 weeks ago she was always saying she doesn't feel well.. often her tummy sometimes her throat, sometimes just that she doesn't feel good. . I got the rest of bloodwork results that the ped ran on her back yesterday and everything is coming back normal.. no mono, no lyme, celiac panel normal, and who knows what else was checked for. If she was telling me all the time when she was calm and rational that her leg hurt I would be more inclined to believe that something was really hurting her. When she is saying it is hurting she is already in a completely irrational mode that I can't talk to her about it hurting.. she just screams and screams. dcmom, I feel the same away about my dd's constant tummyaches. I do believe her on that. I just don't know what to do for her.

I don't know what to think anymore. My dh had been away for the last 2 weeks of meltdowns in my non pandas dd... (well, maybe non pandas) and he was home yesterday and she had a good day. I could see a few times where she was going to lose it but she pulled it together. My dh left today and within 5 minutes of him being gone she was in crisis over something stupid with her brother. She was on the floor up at the top of the stairs once again screaming that her legs and feet hurt and she can't come down the stairs. She finally came down on her but with her feet in the hair and laid down at the bottom of the stairs screaming until I carried her to the couch. That was the end of it.. no more screaming, no more crying, no more legs hurting. This is the 3rd meltdown that has ended with her screaming about her feet/legs. She's walking fine now. I do not believe at all that her legs hurt her during any of this. I know to anyone else it sounds like it's an issue she is only having with me and clearly I just need to discipline her but I really don't believe it's that and I don't believe it has anything to do with my dh having to travel a lot for work at the moment.. He's always had this kind of schedule.. it's not new. I think this seems so similar to my pandas ds's meltdowns when he is having trouble except that he would do it even while my dh was here although still more for me.. Neither ever had issues at school. I guess my question is does it seem that strange that she is not doing this when dh is here? Does it mean that clearly she has so much control it isn't a pandas issue?

My ds was not in a real exacerbation when we did it... I mean he had a minor throat clearing tic and every now and then he would have a minor meltdown that I could tell was pandas related but overall he was in a good place.... his result was still within pandas range (141). He had been on over a month of amox at the time that I had the blood drawn.

Ah, I see my pupil obsession is contagious I keep checking... but ack, I think mine look like that too now. Yes, my kids eyes look just like your son's... ok, well maybe not just... ha... we have not been blessed with beautiful baby blues here......blue eyes in our family would raise definite suspicion.

Susan, my ds (the pick with the eyes with the awful coloring under them) had allergy testing that came back fine. He has no obvious allergies to anything either. The pupils.. those belong to my 5 year old dd. Your daughters eyes in that picture are exactly what I see in my kids. I can't believe the difference in that picture from your NYC ones. Oh, and I think my kids seem to fluctuate from moment to moment too.. there were times today that my dd's eyes didn't look like that but that picture was from today.. even in the same lighting.

YES! Exactly... the exact same stuff is going on here between my kids and it breaks my heart to see them constantly at each other. In fact if I had to pick one thing about all this that is putting me over the edge I would say it is the way my kids interact with each other. I know siblings fight but I really feel this is just excessive and over the top. LOL, oh yeah the "he/she got one more jelly bean than me" syndrome! We got that here too! Yes, my children are hyper! Before I knew about PANDAS, I considered ADHD and just assumed they were very active kids. I have allowed balance beam activity on the back of our couch because it kept them entertained and active! I never thought I would be that kind of mom! Susan

Mati's mom.. I am afraid that what you said might be right. See, that is not my diagnosed pandas child.. that is my 5 year old dd who I am afraid is showing all the emotional/behaviorial signs except doesn't have the tics and ocd (maybe she is showing some of this but not the typical kind.. don't know).

Thanks Vickie.... the ped always told me that ds looked like an allergy kid but he has no allergies that I know of.

Peglem, ugh.. so really my dd's pupils should not have been that big even though they could have been bigger right? My ds's picture was taken in the same location just seconds before my dd.... She was really out of sorts when I took it... it took a while for me to even be able to take the picture because she was making sure it was not easy. Now I am including a picture of my pandas ds... it's not for pupil purposes but it's for the awful coloring underneath... is this what many of you are also talking about by the dark circles under? It's not my best example of it in him but I am just going through pics I had taken this month already where I was not really thinking about concentrating on his eyes.