1koolteacher

[size="2"]Hi all, Thanks again for all of the explanations! I really appreciate it!! So we went to Infectious Disease Specialist and he said my daughter probably doesn't have PANDAS bc her stomach tic has been ongoing/consistent since Nov 07 with no change. He said PANDAS includes kids who have tics/ocd/ect that comes and goes...does anyone feel differently about that or have any ideas,suggestions, comments? i was going to try find some info on that specific part. He did take a strep culture and will give antibodics if it comes back +. It seems to me he was real careful whether he believed in PANDAS or not...he didn't specifically say one way or the other. He did also say to repeat her blood since it was elevated at 570 (antidnaseB) the second time. I am not sure what it was the first time but it was elevated last Nov. I don't believe her initial blood work included the ASO. When i asked about it today, he said to have that one included the next time. He said to repeat study in 2-3 months or sooner if symptoms change. her neuro doc said to repeat study in one month....so i guess i will go somewhere in the middle of those two time frames. He also ordered do have a few stool samples taken since her stomach still hurts. However, he doesn't think we will find anything (as stool and many other GI tests were already done). He also told me to follow up with GI but they told me there is nothing wrong with her gastro due to tests they have done. Maybe I can get my Ped doc to give some antibodics since I know her better and show her all this info if she isn't fimilar with it?? I dont' know what else to do....I am feeling really frustrated and helpless...docs seem like they just want you to sit down and wait a while...UGGHHH!! Sorry i am babbling...thanks for listening. Good news is that my daughter is gaining weight (however i am nervous for fall bc she plays soccer and takes a dance class, last spring i had to take practice from her bc i was too worried she was going to pass out (she never actually did but i could tell she was not looking too good after two different practice times and i couldnt' take the chance). also her heartrate was too low bc she wasnt' eating enough so doc said she shouldnt play.i am also able to keep a closer eye on what she eats during the day vs being at school... thanks again

Okay dumb question...only certain docs will presribe these meds for Pandas or even believe in it? I guess that makes sense because one doc did blow me off about the high ASO results and pandas just last week. He is not a neuro doc just a regular Ped/Adolescent doc. sorry spelling:)

Hi, I have an appointment with the Infectious Disease Specialist tomorrow. I am going to mention the throat culture and antiobodics. Thanks so much for all of your help!! Just wondering if you get a minute can you explain your story about unelevated ASO results but positive throat cultures? thanks!

Hi Kim, Thank you for the info/link! I knew of the side effects from reading the pamphlet that comes with the drug and researching online. I did not know the risk was sooo high...i think the article you sent me said it was 1 in 8...Oh my gosh!! Do you believe I have asked at least three or four doctors (the MD my daughter is seeing, two psychtrists and two phamachists) about this drug?? Out of all those people, I feel one of the phamachists which I have gotten to know at our local CVS, has been the most knowledgeable/honest with his concerns for this drug. The rest of them have told me nothing to worry about for this drug!! We are going to the doctor on Tuesday and he had told me we could take her off then...why i couldn't when i emailed him, i don't know? I have lost all respect for the medical profession, sadly. I have no faith in them. i just don't know what to do anymore. My daughter really has lost any believe in them too. I have tried to explain that maybe if we keep looking, we may find someone who will do more for her....she is really at a tricky age i feel (11 years). Sorry to complain so much...ijust needed to vent.

thank you so much for your replies...i really appreciate it! also thanks for the website, i did check it out. oppps i forget her age...she is 11 so she is still a little girl in some ways but she also was starting to go through puberty when all of this started. i think that is why the whole eating disorder is important and a very real possiblilty except for the fact that she claims she wants to eat, is not worried about being "fat" and gain weight. and of course, the stomach tic is another part of the question. i did read on here somewhere about someone reported seeing their child finger sniffing...i did not even think of that as sign but after thinking back, i think i remember my daughter sniffing her fingers as one of the very first odd thing i noticed maybe even before the stomach started to twitch. she simply puts her first two fingers to her nose and when i have asked her about it, she just kind of shrugs her shoulders and says i don't know why i do it. she claims she wants to eat but doesn't because her stomach hurts and hurts more when she eats. it doen'st matter whether she drinks water, eats ice cream, pizza she says it all hurts the same..... her MD doc doesn't think it is the typical eating disorder case, he says. he says she will feel better and her stomach would stop hurting, if she would just eat. i really want to take her somewhere else. but she is sooo sick of docs and doesn't want to go anywhere else...i try to explain her to that we could find answers and to keep looking but she just doesn't want to....i feel kind of trapped...if that makes any sense. for know we are dealing with the depression, seeing the therapist and psychtrist and taking a break from the medical part (well not me as i am constantly on the web...looking for anything)

hi i am new here and i was reading some posts....any help/advice would be greatly appreciated! thanks so much!! my daughter started last nov to have a stomach tic/twitch/spasm. it has been called many things but the neurologists mostly call it a tic. no medication was given because it was not affecting anything. eeg was done at this time to be sure. it came back fine. we have no other tics, OCD, ADD, mental illness in our family. now she did have a high blood test strep that i was supposed to get repeated however it got overlooked for a few reasons. first it was the holidays, my daughter had not had strep so i am thinking why would her test be high, she wasn't complaining of anything. now i look back and i realize i really should have gotten the blood test repeated. ok so you are thinking what a horrible mother i am at this point? well about feb, she started to complain of stomach ache, still had tic and had lost about 27 pounds (again what a horrible mother i am for not realizing sooner:( ) so her ped doc sent us to the er of a local children's hospital, they did a ton of tests, everything came back fine. we also had pscyh consult to check for eating disorder. told us to follow up with a nutristionist and a gastro doc. so within a week and me being very persistant, we were in to see the gastro and they did gastro work up and again everything came back fine. however, they said she was malnourished, so she was admitted for about 9 days and tube fed. neuro docs still said tic but that it shouldn't effect her stomach. so since march, i have had to make her eat or she probably wouldn't eat enough. she says her stomach hurts all the time and more when she eats. she got really depressed/angry so we went to psych route again and they have her prozac and that has really helped her mood. i worry about the side effects. they also have her on reglan wich is supposed tohelp with food emptying her stomach (again side effects!) one psych said the reglan can help with tics but so far it has not and when we go back to the docs i am going to mention taking her off ( i have asked about it before and they say it is fine for her to be on). she also gets headaches, dizzy, tired easy, conspitated but i really think that is because she is not eating enough. we are going this monday to get the blood test repeated and the reason i have not sooner is because i really thought the hospital would have done that test since they told me there is nothing else to test her for, she just needs to eat and she will feel better, however i realized when i got her records that the blood test of strep had not been done, also my daughter is sooo sick of hospitals, docs, she thinks they don't know what they are doing. so other than getting that blood test repeated, does anyoen have any ideas for me?? i read on other posts that the strep blood test can cause the tics, right?