michiganpandas

i'm new, too and wonder all the time if my daughter should be on abx....she has been slowly getting better w/o them....so last week we tried them for 6 days....i think i was A LOT more relaxed while she was on them, but I really didn't notice much of a difference for her...she had good times during the day and scared times during the day which is exactly the same as she was before on them....so we are not opting for abx as of right now.

dcmom...your daughter sounds EXACTLY like mine....my daughter is a competitive ice skater and loves being on stage(also dances and missed her first dance recital this year b/c she missed so much)......i just know this is going to slowly take away all of her self esteem.... Also, getting sick at school and her fear of throwing up there (and also fear of a panic attack there)....is also exactly the same thing my daughter keeps saying she is afraid of.......it causes her SEVERE anxiety...unless i'm there with her to tell her she is safe. Right now she is trying her first full day w/o me since this started with strep in march and the panda's symptoms started in April.....i only visited her today for an hour at lunch.....but, I really think she is able to go now b/c she knows she it's almost summer....i am so worried about next school year. i think i'll try the valerien root, too....thanks for the suggestion. have you tried hypnosis? i know it sounds crazy, but for some reason i think it might be helpful for my daughter?

thanks for the info...i really appreciate it....i keep seeing things on this board like "positive for band..." or bartollona (?) and I had know idea there was more than just positive or negative lyme..... Her doctor has refused many times to do the lyme test b/c of the false negative....but, then after she did a complete change of everything about her (due to the strep/pandas starting in march) the infectious disease doctor at a hospital ordered the test. is the WB done thru IgeneX something that i could have her infectious disease doctor have ordered?

my daughter has been getting slowly better each week...(starting with 2 cases of strep in march and pandas diagnosis)....her only remaining problem is anxiety....she is very afraid of getting sick again and this causes her to get very scared in situations that are not even stressful...especially scared away from me. (basically if i'm with her and tell her she is safe then she calms down right away). 2 weeks ago we got her back to school for 1/2 a day w/o me and will work next week to the whole day (which is the last week of school).....Does anyone have any suggestions for supplements, vitamins, etc. that might help anxiety....or type of therapy....(currently she is going to a therapist and is on 20 mg. of zoloft). We tried azitromycin for 6 days last week and did not see any kind of improvement. Should I try the ivig? or is she not severe enough for that? hypnosis? chiropractor? or do I just need to be patient. I totally hate seeing my normally happy,fun, relaxed daughter be a so scared and filled with anxiety. I keep thinking that there is maybe just one more thing I need to try.

this is the test they gave my daughter...it came back negative. 2 years ago she did have a bulls eye rash that was treated within the first month with just antibiotics (but, just a normal amount...about 10 days worth). What type of test is this and what other tests would any of you recommend? (no problems until march of this year after strep...diagnosed with pandas).

thanks so much to both of you for explaining your situations...also, vickie ...i love that you underlined that it does not have to be permanent (this is what has been scaring me).....she is not on antibiotics right nor have we tried the steroid burst....so those are at least options...right now i'm so greatful to be where we are, but constant anxiety and me going to school with her and intrusive thoughts is truly nothing to brag about.....we just need to tackle those and that's where i'm left worrying which direction to go. again, thanks...it helps to hear that others have returned to "baseline"

hi....my daughter was totally "normal/healthy" until march of this year when she got strep and the PANDAS began....it has been horrible and she is STILL not back to normal....she gets a little better each week, but I never thought that at the start of June we would STILL be dealing with this....anyways, she is back to "normal" and has improve a ton EXCEPT she still has anxiety and still can't go to school without me there and she now thinks she is swallowing chemicals, soap, etc. ....this is A LOT better than when she started this in march, but i'm wondering if this is as far as she is going to progress???? if anyone is up to it can you let me know ....1. if your child returned to being the way they were before an episode and if not what are you dealing with still......and 2.what treatments have you done or doing ...including supplements/vitamins

hi...i am also very new to all of this...please send an update when you see that doctor...i started my daughter also on omega 3 and vita d right away when this started....(this all started mid march for us)....she has improved soooo much (ocd and tics are gone...just left with the panic attacks) and is not on anything except zoloft and the vita d and omega 3...but, i know everyone (except of course her doctors) says that antibiotics need to be given. we still have a long way to go, but really have come soooo far. good luck

thanks! that does help....i'll look into the zoloft....i hate that she is on it....but, she does have some improvement now (far to go, but at least we can get out of the house and some tics are seen less often)....they wanted to up her dose of the zoloft last week, but i refused so your post made me feel better that i did that. She did test negative for strep 1 1/2 weeks ago so again, your response gives me some hope that MAYBE she is slowly getting better.....also, i had no idea what PITAND meant so thanks also for explaining that....I guess I should assume that since she has never had problems with other illnesses then she would be just diagnosed with PANDAS? I'm sooo sorry that everyone here is dealing with all of this....I feel like it's just not real

thanks for responding....i apologize...i was thinking this was a support group that could provide some guidance....thanks again

michigan...about 45 minutes from detroit

my 8 year old daughter was just diagnosed (kind of)...doctors seem to be not in any kind of hurry to help her....she tested positive for strep 2 x's since the beginning of march..(for first 5 days of the strep no antibiotics were given and she was soooo moody (this is sooooo not her!)....then she was finally tested for strep and given 14 days of amoxicillin...2 days after that ended is when she totally changed....ocd, pacing around the house, panic attacks, and tics...severe separation anxiety and afraid to do anything fun.....this was not her at all..(she normally is very well behaved, very athletic, very emotionally stable)......anyways, she went for 2 weeks like this and doctors kept saying she was not sick....finally after the 2 weeks they swabbed her for strep and it came back positive again ....that's when the doctor told us about PANDAS....so after MANY doctors appointments this is the "treatment" we have gotten so far.....5 days of azitromycin and 20 mg's of zoloft.....this started around april 12th.....She continued to be HORRIBLE...complains of throat and stomach hurting, tics, trouble falling asleep, wants to bite things,etc........but, now we have had 5 days of normal behavior (well at least we are about 70% better) !!!......is there any way that the improvement could really continue or have all of you experienced improvement and then went back to the bad symptoms again???