michiganpandas

Hi we started at a "low" dose 20mg that i KNOW FOR SURE was too high....my daughter was wired the first few weeks....however, it was her first episode of pandas so i really can't totally judge.....we are still at it and that is all she is on.....she is "better" but, left with bad ocd fears/thoughts that she can calm herself down from (due to probably therapy)...but, i want them gone for her. I am considering upping it to 25mg....but, i could also easily consider lowering it to see if that helps!...i really wish we would have started with a lower dose than we did and then up it to the 20mg.....maybe the first increase in the zoloft does "activate" our kids in a bad way, but if we ride it out for a few weeks it helps?? i don't know....I just hate these decisions WE have to make.

Hi...I know I have said before that your daughter sounds like she is in the exact same place as my daughter...we are just stuck with this ocd...fearful type of thinking especially of getting sick and some separation anxiety. we are on nothing except zoloft 20mg....thinking of upping it to 25...and no more than 30....that is the possible plan...i just have not officially decided to implement it yet. i do see improvement when we do specific targeting in a problem area with emdr therapy....http://www.emdr-therapy.com/emdr.html we do also take vita d and omega 3....thinking of adding b-12 or b-6 CONSIDERING ivig...but, just afraid to shake things up also....i am soooo embarrass to say this, but i have been giving her honey for the last couple of days and have actually had really good days since starting this...i know it probably has nothing to do with anything....i'm just trying ANYTHING! wouldn't that be awesome if it was that easy!

Hi When my daughter first started taking zoloft she also said some really scary and heartbreaking things and it scared her, too and made her sad.....it has now stopped......she was soooo bad before taking the zoloft so within the first week I can't make a judge of what she was saying.....but, it was about after the 2nd week until about the 9th week where she would tell me the sad things....(like, mom, i'm afraid that i don't love you)....none of this was my daughter, but boy was it hard to hear....then she would obsess over the fact that she felt that.....also said things like "oh, it's weird how i know i am here and alive, but it does not really feel like i am....how do i know i'm really alive?". We are still on zoloft (20mg)...but, she does not say these things anymore....but, still does have the ocd thoughts/fears type of thinking.....everything else is better and i think the zoloft has helped in the long run...i am considering to "up" the dose a little and see if it kicks out the ocd/fears. I have no idea if it was the zoloft or the pandas that was making her think that way (everyone claims it takes about 4 weeks to kick in, but maybe while it was kicking in is when those thoughts came out?? not much help from me, sorry! but, just our experience.

my daughter is like this....she got strep in march and was diagnosed with PANDAS...my daughter is very fearful that everything will make her sick....she is in therapy for ocd type of thoughts and is on zoloft which i hate that she has to be on.

My daughter has this...I think it's ocd type of thoughts....my daughter will think she swallowed something when she clearly didn't...or someone's spit touched her and they were not even near her and they didn't spit either......last week she worked on it in therapy and it seemed to help (so far...knock on wood)

thanks...it helps to hear someone else has used it.....I actually went to the homeopath dr. back in April...and I totally didn't trust anything from the visit (they recommended many supplements that all cost 20 bucks each)...I wanted to try other things first...but, Trameel was the only supplement I purchased that was recommended.....My daughter had the bad couple of days this week prior to the Trameel....then w/in an hour after taking it for the first time it helped....I would never give anything together, just figured maybe try advil the next day if needed....but, didn't. either way, thanks for the advice

thanks....i might try advil tomorrow if needed....the trameel did help...(but, I'm not a fan of "different").....(within about 1 hour she was fine and the throat clearing stopped and is now outside playing in the water on the trampoline w/ her brother)....I was about to take her in for a throat swab b/c I soooo don't want to go backwards. (and this was the week I wanted to attempt to cut back on her zoloft...glad I didn't b/c I would have thought it was from that)....oh, i hate how i hate this pandas crap!

we went to a homeopath doctor who said Trameel would help with inflammation of the brain....Has anyone heard or tried this? Also, for those of you who give ibruprofen often do you give it (on average)...We are going on day 3 of more anxiety than normal and today the throat clearing tic was even starting to come back....I gave the Trameel today and it seems to be helping (so far)???....i can't figure out why there is more anxiety....she has not been around anyone who is sick and we are totally stress free and eating foods that have never caused a problem....the ONLY thing that is different is her ear piercing hole was infected and is now clearing....would that cause anything!??

very interesting!....ok, now you have me thinking I will get her tested Glad to hear you found that out about the milk

my daughter is for sure pandas...(well, maybe lyme, too,..but, we have not looked into that more... yet)...just the standard test from regular doctor)....right now she is about 90% back to normal (not on any antibiotics...but, is on zoloft).....i just am so scared of her getting sick again and going back to how horrible it was in march thru may of this year.....so my thought was to make sure she is not exposed to anything that might be a bother to her.....she still complains of her stomach hurting after eating....mostly when she eats something junky...but, i think it's just her ocd thoughts that are scaring her....anyways, that's why i was tossing around the idea of allergy testing.......otherwise, no typical allergy symptoms (runny nose, itchy eyes, etc.) so i probably just need to chill out on this issue! lol

the basal ganglia did not show any inflammation in my dd's mri....and she was in full blown panda's then....but, they say you can't see it in an mri??....my guess is that doctors can tell with the dumb tests that they do (follow the finger tests) that they don't need an mri......i insisted on one and they insisted we didn't need one....i guess they were right.....but, now i don't worry (about a tumor!)

I don't think my daughter has any allergies, but was thinking it might not be a bad idea to have this checked out so that she is not exposed to anything that she is sensitive to....however, she is about 90% better so i'm not sure if it would be really worth putting her through the testing? any thoughts or opinions?

are you going to try this?

Hi....this exactly what my daughter is experiencing now....she went from being HORRIBLE with symptoms (tics, dizzy, separation anxiety to the maximum degree and ocd in many ways...had to be homebound schooled).....she had strep in March (confirmed)(same time as your daughter)......anyways, right now her only problem left (after 2 x's on antibiotics....just for the normal 5 day course) is the fear like you described......she thinks things are getting in her and they are clearly not and this happens all day long....(chemicals, soap, dirt, anything)........she has been doing therapy 2 x's per week since april...(but, that was to work on the separation anxiety) we are starting this week to work on the scary thoughts she has.....can you PLEASE keep me in mind and let me know if you start any type of therapy that is helpful or if you decide on abx and they end up being helpful....i'll do the same for you....(but, i honestly don't really know how to use this forum correctly w/ sending personal messages???? right now we are not opting for the abx, but i wonder daily if they would help?

I was wondering if it is at all possible to maybe start a thread/topic where people who have had long term improvement could post their success story and what helped them......i feel like it might help especially being new to all of this...my head spins daily! but, it seems like there are so many people who have success then backslide???....i know if we got to the point where my daughter was better for longer terms i might not visit here as much....but, probably would on and off....and it might be nice to post a success where new people can view it at the top? does that make any sense....i know it always helps me to read where some of you have been and how far some have gotten.

yes...my daughter does at night....but, does not have tics/movements during the day....the doctors have all said this is normal, but i don't know if i agree..i have slept w/ both of my kids next to me and my pandas daughter clearly has more twitching all night ......(my son does twitch, too..so yes, it is normal, but my daughter does all night)

we did.....they wanted to rule out a tumor, but they totally thought it was not a tumor....mri came back good......the only thing it showed was cysts in the sinus region which they said everyone has and is "normal"...i didn't even know that those showed up until i got the records myself to review them.....they had to put her under b/c of the tics and she is 8. also....please let me know how it goes if you decide to take off the abx....(don't you hate all of these decisions!!!)

thanks...that helps....she is on zoloft (20mg)...but, sometimes i worry that it was the cause of this (although she did have these thoughts 2 years prior and they did go away.....but, now hear we are after a known strep case and they are back....she does go to therapy so i'll mention the epr.....right now her therapist has been doing emdr (not sure if it's similar)....but, therapy has been working on getting rid of ALL of the other stuff she was experiencing....(SEVERE separation anxiety, couldn't go to school or activities, couldn't play w/ friends, etc.)......so right now we are at the point where she says she "knows it's just thoughts...and it's not real"....but, she still continues to have them.....it is actally both...she's worried she did something wrong (asks over and over if she cheated on something she wins or did well...when she clearly didn't)...and she is fearful of getting sick/throwing up..so that goes along with the fear of ingesting.

this is once again where my ignorance shows up.....if strep is hiding in the body then wouldn't long term antibiotics kill it?....why do the pandas symptoms show up once the abx. are stopped? this is what i don't get.....do the antibiotics help with something else besides the strep itself?

I love that you are asking this....we opted to not put my daughter on antibiotics (diagnosed this March)...she has been slowly getting better.....we waited until she hit a 2 week mark of staying the same (almost better, but some anxiety) and then gave her a 5 day course of azitromycin...i didn't really see a difference (level of anxiety stayed the same)....she is still now the same (which is now 2 weeks after the 5 days of abx)......i guess if we would have started the abx right away i would have thought she was slowly getting better because of them (does that make sense?).....but, i do debate everyday if she should be on them because of the success of others on this forum. I do know that ANY time she complains of a sore throat we are putting her on them and I think next year we will put her on them around Feb-April because she gets sick EVERY March....i don't want to take a chance. I also debate about getting the tonsils out.....i think we might go that route

just curious if anyone has a child with this type of ocd and if it goes away or how to handle it.....my daughter had this one time when she was 6 for about 2 months....and now has these thoughts again since the PANDAS "started" this year...any meds that could help? she is always scared she put something in her mouth (for example, she'll see a catepillar and ask if she put it in her mouth...she thought she swallowed wood chips today and had to start spitting...(they were no where near her mouth).

where in michigan are you located....my dd goes to dr. Leleszi in Farmington Hills (child Neurology). (Michigan Institute for Neurological Disorders)