BethM33

Uh oh...I'm confused... :-( Ok, the blood tests went fine, I guess... It was so hard having to basically hold him down... I feel like I've been on a roller coaster today. They did a strep test too and said it looked like it "COULD be a faint positive." so they gave him Cefzil? I asked what the blood tests were for and he said "Strep, etc." I said ' I thought it was to test for PANDAS and stuff" and he said 'Yeah, that's the same thing...we're talking about the same line of things..." HUH??? I'm SO confused. Anyway, they said results should be back on Wednesday??? They said the neuro should call me then, but if not, then to call them and so on.. I'm so tired of waiting and waiting and waiting and not knowing anything... Why can't a neuro just see him and say "Ok, here's what's going on." ya know? It's emotionally draining... To the previous poster... Yeah, he saw a neuro, but no, she did not do any sort of tests on him...she just said that's what he had...no meds were given or anything like that...She's the top neuro in the state, so I trust her judgement, but after seeing what all of you have gone through and done, I feel like I'm in an uphill battle.... ***sigh** Thanks for your support guys... ***hugs****

So FINALLY, an answer to prayer... The dr. called and said the neuro. wants my son to have blood work done up tomorrow, then she will see when she can get him in for an appt. with her. So, tomorrow morning at 8:30, we're taking him to get blood work done. I'm just curious...what will they be looking for exactly?? He was diagnosed with PANDAS at the age of 3. (he's 5 now.) At the time, they did not do any sort of blood work or MRI or anything. She (the top pediatric neuro in the state) just saw him and decided that's what he had, etc. She has not followed up with him until now, either. We were under the impression nothing could be done, so we just dealt with it. The only reason I kept calling and calling this time, is due to the tic getting worse and worse and always adding on a new behavior/tic each day...something has to be going on! Anyway, thankfully they will be seeing him tomorrow. So what's she looking for in the blood work? Thanks ya'll Beth

WOW! I have not ever seen that! Thank you for passing that on!

Y'all are just awesome. :-) Thank you for sharing. Peyton has a sensory thing too...he has this thing with sweaters being "too itchy" even if it's NOT. He says he feels like he's choking in it. Bless his heart... Tonight he will be Darth Vadar. He HAD to have the black gloves to go with it though. He loves going door to door and like you said, I think mine too just loves collecting things, especially food. He does LOVE to eat.... Luckily, he eats healthy foods, but boy, on Halloween he is all about candy! :-) Whatever the case, I Hope you all have a safe and happy time...they won't be little forever will they? :-( Enjoy what you can and HAPPY HALLOWEEN!!!!!

Thank you all SO much! Oh and thank you for moving my post... I didn't know I'd posted on the wrong forum. My pedia. put him on Amox. just for 10 days. It did NOTHING. But, GOOD NEWS!! I got a call yesterday that they want to see him for blood work on Monday...after that, the neuro will review it and get him in ASAP. THANK THE LORD!!! THis site is a HUGE help! I'm taking all of your advice...thanks SO Much!

My son is 5 with Pandas. i'm wondering...how much is too much television or computer time for him? Does it bother the PANDAs at all, making the tics worse etc.? I usually limit tv and computer time for both of my kids, but am just curious as to whether or not it makes his tics worse or no different? What do you all think??? Also, has anyone else noticed an increase in symptoms (tics, etc) with weather changes??? We live in the South and every time a front comes through or the barametic pressure drops or changes, his tics get worse... is this all in my head??? Bethany

Vickie, you just reminded me of something else!! Peyton play soccer and LOVES it, but during his first year, he would NOT play...he just stood there. I let him. During the last few games, I forgot to bring his shin guards and would you believe he ran out there and scored 8 goals?!!!!!!! I am NOT kidding! It was the shin guards he hated, but he never told me!!! LOL After that, I told him he had to wear SOMETHING on his legs, to prevent him from being hurt...I took him shopping, he picked them out and he's been playing ever since... WOW... My eyes are opening!!! I had no idea people has similar stories!

Oh my gosh! I'm so glad you said this. My son is 5 and has PANDAS. The other day at school, they had "funny feet" day, where they were to wear mismatched shoes or socks, etc...something funny or cute... He REFUSED. LOL I was SO confused! I never even thought about it being related to PANDAS at all!!! you just opened my eyes! Is that possible as to why he didn't want to do it? In fact, he ended up crying about it. I told him he did not have to do it , or that we could do it and I could just put his normal shoes and socks in his bag, so he could change when he wanted to. It literally took me 40 minutes to get him to decide what to do! HAHA! I thought "OH MY WORD, WHY is this so difficult?!!!" Now I see, it may have been the PANDAS? Eventually, he wore 2 different socks, but ended up changing at recess. :-) Luckily, he does like Halloween though...strange, isn't it?

Thank you Faith! I am currently trying to get him in with someone else, but am getting no where fast. It is SO discouraging to not be able to get him seen NOW. I'm checking that thread, but so far, no other MS docs... Thank you for your help though, Faith! It helps to know we're not alone...

What is the Cunningham test and Cam Kinase test???

My son was diagnosed 2 years ago with PANDAS, by the top Pediatric Neuro. Dr. in our state. However, I desperately need for her to see him again, and she can't until APRIL! My son is getting worse and worse and we really need to get him in NOW. His dr. is working on helping us, but so far, nothing! Does anyone know of any other dr.'s in the Mississippi area??? (Even in AL or LA or GA?)

Thank to my friend Vickie for pointing me toward this website! I'll try to sum it up as fast as I can... I just need help figuring out what's going on with my son.... My husband and I have a son, Peyton, who in 2007 (when he was 3) was diagnosed with PANDAS syndrome. I had never heard of this before! He had recurrent strep, etc. and then began making strange facial gestures, eye movements, etc.\ His dr. sent him to a ped. neuro who determined he has PANDAS. Well, we have read alot since then, about this disorder. We know that the tics can come and go, etc., but Peyton's tics change every time they return. It's never the same tic twice. I have read that this can be tourettes?? I'm starting to wonder now, if he has PANDAS or TS??? The last month, Peyton's been looking to the side with just his eyes, as far he can, then he shuts his eyes and jerks his head a little. It started off as just looking to the side when telling me things, but then it moved to the head jerking and as of yesterday, he is now shaking his shoulder and arms as if he had a chill, while he looks to the side. I have taken him to the dr. to get checked for Strep and Flu, etc, because I know his tics get worse when he has an underlying illness. They said he was 100% fine! So my question is, WHY the increase in the tic and why is it getting worse and worse??? Usually his tics last a few days or weeks, then are gone for a few weeks or even months, then they come back either by him making noises or doing gestures. This tic, however, has stuck around and just progressively becomes more involved. I've called his dr. over and over and they sent all of his papers to the top ped. neuro. in our state (the one who diagnosed him 2 years ago), but they said the neuro. cannot see him until APRIL!!! I can't possibly wait that long. Can someone give me any idea what might be going on with Peyton??? I will say this.... He is 100% perfect social wise. He engages people when you speak to him, he is funny and sweet and incredibly smart. Has lots of friends, is very social and loving and caring and very interested in the entire world around him. On the flip side... He does have some OCD tendencies in that he can get into a pattern of things and stay that way, but it's not severe. Also, when he has fits, it is IMPOSSIBLE to reason with him or get him to stop crying or doing whatever he's doing, cause once his mind is made up, there is no stopping him. Usually he has to just go to his room and cry it all out, then he's fine. When he was much younger, I noticed that his "tantrums" seemed WAY more difficult than what our older son ever had. Peyton was always more difficult to get through to and more difficult to distract and get him to stop crying, etc. We would have to just basically wait it out as NO reasoning was going to stop him. As he is now 5, he does cry A LOT when he's upset, when he doesn't get his way, etc., but he is a little easier to deal with, the older he ges. Is this part of PANDAS??? ANY advice from y'all would be greatly appreciated! Meanwhile, we're still going around and around trying to get a Neuro. Dr. to see him NOW!!! ***sigh***

Thank to my friend Vickie for pointing me toward this website! I'll try to sum it up as fast as I can... I just need help figuring out what's going on with my son.... My husband and I have a son, Peyton, who in 2007 (when he was 3) was diagnosed with PANDAS syndrome. I had never heard of this before! He had recurrent strep, etc. and then began making strange facial gestures, eye movements, etc.\ His dr. sent him to a ped. neuro who determined he has PANDAS. Well, we have read alot since then, about this disorder. We know that the tics can come and go, etc., but Peyton's tics change every time they return. It's never the same tic twice. I have read that this can be tourettes?? I'm starting to wonder now, if he has PANDAS or TS??? The last month, Peyton's been looking to the side with just his eyes, as far he can, then he shuts his eyes and jerks his head a little. It started off as just looking to the side when telling me things, but then it moved to the head jerking and as of yesterday, he is now shaking his shoulder and arms as if he had a chill, while he looks to the side. I have taken him to the dr. to get checked for Strep and Flu, etc, because I know his tics get worse when he has an underlying illness. They said he was 100% fine! So my question is, WHY the increase in the tic and why is it getting worse and worse??? Usually his tics last a few days or weeks, then are gone for a few weeks or even months, then they come back either by him making noises or doing gestures. This tic, however, has stuck around and just progressively becomes more involved. I've called his dr. over and over and they sent all of his papers to the top ped. neuro. in our state (the one who diagnosed him 2 years ago), but they said the neuro. cannot see him until APRIL!!! I can't possibly wait that long. Can someone give me any idea what might be going on with Peyton??? I will say this.... He is 100% perfect social wise. He engages people when you speak to him, he is funny and sweet and incredibly smart. Has lots of friends, is very social and loving and caring and very interested in the entire world around him. On the flip side... He does have some OCD tendencies in that he can get into a pattern of things and stay that way, but it's not severe. Also, when he has fits, it is IMPOSSIBLE to reason with him or get him to stop crying or doing whatever he's doing, cause once his mind is made up, there is no stopping him. Usually he has to just go to his room and cry it all out, then he's fine. When he was much younger, I noticed that his "tantrums" seemed WAY more difficult than what our older son ever had. Peyton was always more difficult to get through to and more difficult to distract and get him to stop crying, etc. We would have to just basically wait it out as NO reasoning was going to stop him. As he is now 5, he does cry A LOT when he's upset, when he doesn't get his way, etc., but he is a little easier to deal with, the older he ges. Is this part of PANDAS??? ANY advice from y'all would be greatly appreciated! Meanwhile, we're still going around and around trying to get a Neuro. Dr. to see him NOW!!! ***sigh***