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  1. Thanks so much to all of you. I have so much admiration for you all. I don't know how you do it. (knocking on wood) I am still not entirely sure my DD (7) has PANDAS. Her symptoms have been pretty mild. She had a couple months last year with an eye tic after a case of strep. That is when I started researching and learned about PANDAS. I have started to realize that she does have some OCD tendencies...always thought they were just her neurosis (like mommy). But she has had strep related illnesses far too often. That with her particular behaviors and atypical symptoms (barely a sore throat...usually neg strep test...tummy trouble) has led me to believe she does have PANDAS or something like it. This is our first time with Scarlet Fever. Again, barely a sore throat, no fever...but the rash is driving her nuts. I asked for a stronger abx than the usual. But she isn't on any maintenance meds or anything. Aside from these illnesses (at least every couple months), she is very healthy (again, knocking on wood), does great socially and academically. So I feel very lucky. But I know in my gut that something isn't right. I can always sense before an outbreak is going to happen too. Not sure how. But once she mentions a headache...I just get that feeling. Anyway - thank you all so much. I wish I didn't have to wait for a whole month for our ENT consult...but you all have made me feel so much better about the surgery. I really appreciate it.
  2. My daughter was diagnosed with scarlet fever today. Because of her reoccuring streps and now this...Dr is suggesting tonsillectomy. I have an appt scheduled with a Ped ENT for May. Has anyone has success with this? I am still not even sure she has PANDAS and if she does, it is super mild. But she simply gets sick far too often and has strange (non typical) symptoms when she does. I am petrified for her to go under or have any surgery. But if it would mean a healthier child...then obviously I'd want her to have it. Thought I will be an absolute wreck the whole time... Thoughts?
  3. Thanks - yes, I did already send that to Dr. K and will bring it with me when we see him or another specialist. He definitely agreed it was a tic.
  4. EAmom - Thank you!! She has one sister (who is only here on the weekends) and she has not had strep ever. We assumed that was because she had her tonsils and adnoids removed as a very young child (she is 12 now) because of snoring. But I will keep an eye out for sure!! During that episode I DO believe it was amoxcillin as the first choice and augmenten as the second. The video I have (posted in my first post here) is her at her absolute worst during that episode in October. I am so glad I was able to catch that. Will be sure to do the same if it happens again. As far as strep being the trigger - what is weird is she doesnt seem to get a sore throat really. She gets stomach issues from strep. Something I never knew before was possible. I was very surprised the last time when she tested positive for strep. The rapid came back neg and they called me 3 days later to say it was pos. By that time...she had NO ill symptoms at all!! The doc did NOT order a throat culture for today. Should I ask for one or are the blood tests enough? Thank you again!!!
  5. Please please please dont think I am being argumentative or rude. It is hard to tell my tone through the typed word. I am just trying to figure this all out. She was sick in October...I was able to catch it before any PANDAS sx were shown (because I am a paranoid mom and take her to the Dr probably more than most people). She had one round of AB for the postitive strep. When that round was done, that is when the eye rolling started. I researched and waited a couple weeks with nothing getting better or worse. Just eye rolling (which DID scare me A LOT). I took her in...but they never heard of PANDAS. I gave them paperwork and asked for a second round of AB. After that second round, she gradually got better and it hadn't been seen since. (and it was never seen before that ordeal either) Fast forward to last week. She got sick again. Pretty minor symptoms (stomach issues). Was better by Sunday. Monday night and Tuesday morning we (me and her teacher) noticed a handful of the same eye rolls. But none of us have noticed any since Tuesday morning. Also, no other symptoms and she is being totally normal. No ABs this time...only started her on Natural Calm. So this is why I am so questionable. That first episode in October has PANDAS written all over it from what I have read. But since then, no real issues to be super concerned about. That is why I was thinking of giving it the weekend to see if I notice any more eye rolls. If so, go through with finding a specialist or simply keep my appt with Dr. K. I will get her tests done today so we have something to look at and maybe even my own Doc can spot any abnormalities. I am so sorry if I came of angry. I am not. I am just getting it from all ends and am very confused and all the meanwhile trying to keep a lid on my own anxieties. Thank you all so very much for putting up with me!!!!!
  6. I am just very overwhelmed and confused. I get what you are saying, truly. But here is what I have in my head - DD had an episode of eye rolling shortly after strep in October. Lasted about 2 or so months and went away after 2nd round of ABs gradually. (was it the ABs? I don't know) That was her only symptom. She was sick for 2 1/2 days. After which she had about 5-10 eye rolls total in a 12 hour period. None have been noticed since and she is displaying no other symptoms. What is a Dr. going to SEE when I take her to him? There is nothing there (again knocking on wood) to see. Why beg for a medicine (and I will have to beg...she may even say no quite likely) for something that may not even be there? Would it hurt to wait a few days and see if this was even really a flare up? I am not arguing or doubting. I am just really confused. And my husband is really of the belief that we should wait and see what happens, if anything happens. When I first came here I was told not to freak out because the kids who did well or got better...usually their parents arent still posting here. That most here have been of the severe cases. But now I feel I am being told that this will likely get worse and I am in for a world of ****. What do I believe??
  7. Your comments make me think of the "big question"...how many kids out there with untreated "mild" PANDAS(bear in mind that most of these kids are undiagnosed/misdiagnosed/flying under the radar) end up with doing just fine? Maybe some of these "mild" kids are okay because they get a course of antibiotics for some other reason, or the next strain of strep never comes along which sends them into a full-blown PANDAS tailspin? There really aren't numbers, because so many PANDAS kids aren't diagnosed (esp. the mild ones). Even the PANDAS docs don't know this...by the time they travel to Swedo or Dr. K., or Dr.Latimer, they are severe. So do you believe that all mild cases turn severe eventually??
  8. My Dr. is ordering all of the tests that Dr. K recommended. DD will be having them done today. DD hasn't been sick since Sunday and only showed her eye rolling a few times on Monday night and Tuesday morning. None have been noticed since. Dr. K cannot get me in until March 9th. Still waiting to hear from a Dr. at Children's so I can find out about her PANDAS experience (she is covered completely by insurance and is closer to us). I have some questions: Will the tests still be accurate since so much time has gone by since her being sick? Should I wait until the next time it happens IF (hoping) it happens? Should I wait to see if her possible PANDAS symptom returns before going to a specialist? My husband thinks that there is really nothing for a Dr to SEE right now and that we could be wasting our time. He suggested we wait to see if it even happens again...to keep an eye on her the next few days since we really havent been noticing anything the last 2 days. Also, since she really hasnt been showing symptoms other than a handful during those 12 hours...should I push for AB right now?? Thanks everyone.
  9. Thank you all very much. I guess I was just discouraged because my husband doesn't really see the need to see a specialist if they are "just going to prescribe antibiotics anyway"...and really, I dont care what others (incl. my mom) think...but I do need him to be with me on this. Yes, I do have a tendency to catastrophize. And I cannot stand the thought of any thing bad happening to her (as i am sure is the case with all moms). But as I move through the day and after an appt with my therapist lol...I am realizing I need to put things into perspective and stop assuming the worst case scenarios. My "what ifs" take over sometimes. I emailed a Dr in Illinois who was recommended on another thread. He watched the video of my daughter and wrote back right away. He charges 250 cash to become a new patient (even tho insurance will cover him) so my husband is VERYYYY leary. Of course she is worth it to us, but we do live paycheck to paycheck pretty much. I did make an appt but couldnt get in until March 9th. My family Doc is ordering all the suggested tests he mentioned in his email and will refer us to whomever we chose. I have a call in to a Dr. at Children's Hospital in Milwaukee (very good place) who is supposedly familiar with PANDAS. I asked the RN HOW familiar she is and asked to have her call me with info about the Dr's experience. If I feel comfortable with her answers, we will try there first. She is a pediatric neurologist. I am thinking I should ask our Dr if she'd be willing to prescribe an AB in the meantime as a few weeks seems to be long to wait without doing anything. Do you agree?? Anyway - thanks to all of you. You have been a great help.
  10. They think this is no big deal. "Since ABs take care of it, then I am sure it isn't serious". These are the kinds of things I am hearing from my mother and husband. They think since her symptoms are so mild and transient, that it just isn't something to worry about. Where can I find a list of stories about patients with PANDAS so I can show/copy them for them to read. They don't seem to get that this can get worse and that it isn't so easy to treat or find doctors willing to treat it. VERY frustrated!!!
  11. I worry that she won't test positive now and that the doc will only prescribe if positive. Then what should I do??
  12. Thank you again!! This is the info I sent to my Dr - http://ocfoundation.org/EO_PANDAS.aspx I can say that my daughter does have the following: Challenges with eating - just extremely picky. But she does eat and isn't allowed a bunch of junk food. She does have sensitivity to clothing. If there is a bump in her sock, she will be VERY bothered by it. There are certain fabrics she hates (such as flannel). But they don't make her freak out or anything. She reacts to it like a nails on the chalkboard kind of way. And then she has the little quirks I mentioned above with the organizing and list writing. But when she is unable to do this, again, she doesn't freak out...will just complain a bit. Honestly, I have always had my neurotic ways so I figured she just "got" those tendencies from me. I guess perhaps there is more to it?? Other than that she doesnt (knocking on wood) display any behavior issues whatsoever. Her grades are great. No anxiety or deteriorations. Also when I was in 2nd grade I had an episode which was never diagnosed. I lost control of all my facial muscles basically. It started with eye shifting and then my head would turn to the side without my control. Also, my tongue stuck out and I couldnt keep it in my mouth. It was very traumatic, but only last a single day. That night, I threw up and was suddenly better. They did EEGs and everything and my mom never found out what was wrong. Not sure if any of that is meaningful. If I were to ask for an AB tomorrow, should I request Augmenten?
  13. As I have been going through the posts on this site the past few days, I have read several responses concerning Natural Calm. I take it myself and am wondering how much I could give to my daughter. I did order some Kids Calm Multi for her, but would like to try this in the meantime. She is about 50 lbs and 7 years old. Also, with the baths - how much Epsom salt do I put in in order to make a difference? And how many times a week is okay to do this? OH!! One more quick question...do you allow your child to play with hand held video games? Do they seem to make a difference? She has a DS and an iPod Touch that she plays with frequently. I just want to do what I can now while I wait for the next step. Thanks!!
  14. Thank you all so much for your input. I just returned from helping out in her class today for their V Day party. The teacher told me that she did notice her do it a few times today. I haven't seen it yet. I think it may happen more when she is stressed or concentrating. She said she will let me know if she notices any increases or changes. I am of course willing to find a PANDAS friendly doc. I first want to see what our physician says after reading the material I gave to her. She is usually very compassionate and receptive. I hope that is the case this time. Do you think I should ask her for Augmenten for this latest possible exposure? Will it matter if the virus has already passed?? For those who take daily antibiotics, what are the side effects and downsides to that? My friend whose son was diagnosed with PANDAS, his doctor said no to daily ABs because his tics were minor and transient and that the benefits didn't outweigh the risks. I am curious what those risks are. He also has autism and is non-verbal so not sure if that makes a difference. The mother said she actually sees this as a positive thing kinda because it lets her know when he is sick since he cannot tell her. So that may be another reason for the no ABs. Is it possible that this will be the worst of it - that it won't progress or get worse? Is it possible she will grow out of this?? I wish I could stop worrying so much. My head is spinning.
  15. Also posted in the PANDAS forum... I have recently written our story. I am hoping others here can read it and watch the posted video of my daughter's eye tic. ANY input would be more appreciated than you can know. http://heatherrayne....our-experience/ She was sick again this week (about 2 months after the 1st episode ended) and I have noticed a few "eye rolls" again today. I thought we were in the clear. I am so scared and nervous and worried for her. Further info - she has no other symptoms. She does great in school and socially. She has always displayed some VERY minor neurotic behavior - such as list making and having to do things a certain way or she will get upset (but not to the point of tantrums or rages). She organizes things her certain way...stuff like that - nothing life altering. Other than that - pretty darn typical. More info - We live in SE Wisconsin. I haven't really found too many Docs around here (been reading this and various sites for quite some time now). But someone I know has a son who was Dx by a pediatric neurologist in Milwaukee. So, at least I know there is a doc around who believes in PANDAS! I wrote a letter to our primary family doc (who I have had for 20 years now) and also printed a letter I found on here (written for medical professionals whom are unaware of PANDAS). I am sending that to her today. That first episode, she got better very gradually after a 2nd round of antibiotics. I think having lost her ipod (she plays games on it) may have made a difference as well...not sure. But now my DH bought her a new one (grrrr). This morning, I noticed nothing. And last night, only 3 individual eye rolls. I am REALLY hoping this won't turn into a full episode. I did write to her teacher and explain everything and she said she would pay more attention and let me know when/if she notices. She said she has noticed in the past. I was not happy to hear that, obviously. I did go ahead and order her the Kids Calm Multi which has the same magnesium in it as the Natural Calm (I called them to make sure). I actually take it myself for palpitations (PVCS/PACS). And regardless, her eating is so picky, she could certainly use the nutrients anyway. I have a history of anxiety myself and when this started in October, I had a complete relapse. This has really overwhelmed me. And when I saw yesterday that it could be coming back...it broke my heart. My family thinks I am over reacting...that she will get over it. Thank you for your time!!!
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