michiganpandas

that is/was my daughter's BIGGEST all time fear...throwing up. We did Rothman last summer. You will watch a lot of youtube videos....our favorites were the "Family Guy Chowder" video and family on a roller coster having a blast until the mom got sick...you'll see those ones for sure! Exposure is the best help, but it's for sure not easy. The school year after sudden onset of this fear my husband had to meet my daughter at school every day for lunch just to get her through the day and b/c the lunch room is a place where throwing up usually happens. For 4th grade (this year and the year after we did Rothman 3 week) we had to basically force her to go and told her we refused to meet for lunch. She had a back up plan for comfort at school (could go help the librarian with a friend) right after she was done eating. It was not easy, but eventually got better she ended the school year with only missing 3 days of school for totally normal things! Best of luck to you guys...the ocd fears are incredibly difficult to see your child have to suffer!

Next year is my daughter's last year of elementary....all next year and throughout the summer I plan to visit her middle school as often as possible. Maybe this summer you could pop in once per week if it is open and walk the halls...or have a popsicle on a bench outside of the school...or walk around the fields and kick a ball, etc. I plan to do this to make the transition a little easier....maybe you could talk about this with her and come up with a plan.

we have a success story.....my dd was very severe with intense ocd fears.....was non-functional at onset for about 2 months.....then slowly went through the small ups and continued big downs, but never free of the ocd. Finally with time (1 1/2 years)....my daughter started doing a lot better. Attends school (voted President of her school which makes me beyond proud)....She is a now a "normal" child. Now is she completely free of ocd....not entirely, but she understands it and recognizes it and gets past it fairly quickly. She used to do compulsions all day long...maybe 100 x's per day....now it's maybe 5 times per week! which is no big deal...we can handle that! *this is what helped us......5 day steroid burst along with keflex antibiotic 10 days. *rothman center 3 week intensive ocd therapy *treating with antibiotics when ocd returns all day long (have had to do this 2 x's since January...it helped clear it both times) *sadly had to stop an activity that she loved and was really good at, but due to ocd she had too many panic attacks there.....I think this is why some kids need to also end up being homeschooled for the same reason....sometimes it's just too hard to get past the fear of the panic and it's associated at that place *TIME stressful situations....we always have the following with us just in case: rescue remedy drops ibuprofun pepto calming creme

yes,,I forgot...the tampa aquarium is also free if staying at RMH..and my kids loved it....we also went to go see Winter the dolphin, but it was a lot of money and actually more fun seeing the dolphins at the Pier. We also went to the zoo (can't remember which one? ) but, they went on a camel ride and fed the giraffes. We had my daughter work on her 2 main fears....vomiting and eating sugar.....the eating sugar fear was beyond annoying to have because EVERY stinkin day she would come across junk at school (rewards) or at friend's house...and she loves sugar/junk foods.....she would eat it and then totally panic all day with a fear that it was going to make her sick. She still has issues with this one, but it is a lot better. The other biggest one was the vomiting fear....she would ask me at least (no exaggeration) about 100 x's a day if she was going to throw up....and would have a panic attack at least a few times daily...it was HORRIBLE! It is great that you are starting now with exposures....if you have any other questions let me know

my dd went there for the same reason....INTENSE fear of vomiting.....you will watch several videos of vomiting......our personal favorite is the Family Guy chowder scene and also a spanish lady on a roller coster vomitting over and over with her family freaking out....oh, the fun memories! lol....feel free to find those lovely videos on youtube! .....she also had to go to "rate my vomit"....and rate the vomit pics people send in! It did help my daughter.....not pefect at first...but, it has given her skills to refer back to and I would say that they were, by far, the best therapy that we could ever probably get....I thought for sure we would be back there this summer, but so far my daughter is doing so much better compared to where we were last year that I do not feel she needs a refresher at this time You will walk to the RMH because it is right next to it....my kids had fun trying to catch lizards on the walk there. The St. Pete pier is awesome and you can see dolphins each night (usually) around 5:30 We visited St. Pete beach and Clear Water beach. We also drove to Disney on a Wed. after therapy and drove back to the RMH that night (back by around 11:30). All of the things we did were beyond amazing that we even did them.....my dd could not even attend a movie at the theatre without intense fear....so we actually were trying to force fun things with her (again, only a pandas family would understand this)....it was perfect, because we could then go to therapy the next day and discuss what was hard, etc. We had and loved Dr. Rahman! He is pretty much a hero to our family!!! The RMH house was sooooo nice.....meals provided....and friendly. You can go to the Sunken Gardens for free...Dalhi Museum for free....and work out at the YMCA (but, that was too far of a drive...I just ran around St. Pete)

this has worked the best with us so far....I am also trying to treat with this only when symptoms pop back up

steroid burst?

Did she start back to gymnastics? Sadly I think these kids get too much anxiety with even the sports they love. My daughter had taken a break from her sport, but when she returned the anxiety was too much....she ALWAYS begs to keep going to gymnastics and says she LOVES it...which she does...but, I think whenever her heartrate goes up or she has to do something really hard she gets the anxiety back....and it lingers.

Dr. Rahman is great!!!!! (and I am picky!) But, just a suggestion...maybe mention that you do not want your child to have an intern/practicing therapist....we had this a few times a week....one would sit in the session to listen/learn....which I think is great and needed.....then afterwards my daughter would get an extra session right after with the intern.....it could actually be a really great experience....ours was VERY nice....but, I think that the session was better ended on Dr. Rahman's note and not revisiting the same session just for practice. Pros and cons to the situation....and not sure if you have a choice...they didn't really ask us, but I probably could had said no????

Dr. T prescribed us azithromycin 2x per week. I ended up giving it 3x's per week for 2 months and then cut down to 2 x.

I am at work so only read some replies...but, just wanted to mention that w had activation with zoloft at 20mg...and again when they upped it a little it got worse.... but, I decreased it slowly on my own decision based on what I read here....she did better with the decrease HOWEVER, when we got to the point where she was completely off she sadly got worse again, so I put her back up drop by drop and she actually was BEST at only 4 small drops....there is not going to be any doctor or neurologist that will ever start you this low and all will say it's a placebo (it's not because I put it in sierra mist (which is required to mix) and my daughter has never been told if I have gone up or down So, my opinion to anyone getting on zoloft or any psych drug is to allow the prescription to be written for any amount (the higher the better because then you get more of the prescription)...but, then only give a VERY small amount....you can tell them later for the follow up that you started lower and if it worked 4 drops is only .3 ml......it's probably about 4mg As for the study....I had the knowledge of it and I declined at the time when we were in that 6 month period for the same reason you mentioned...spinal tap and also my daughter was SOOOOOO bad with anxiety that we could barely leave the house let alone travel or get all of those tests down BUT, I'll admit...I could kick myself for not doing it....I think it would have helped a lot and it would have been beyond nice to have doctors who are knowledgeable about all of this! good luck in your decision!

I read the books with her...and did ERP on my own with her...it does help a lot......but, I will say that after we went to Rothman in Florida it was even more helpful because she heard it from someone else...and they were able to push her more (rather than me...the mom!) Now after being there I can refer back to what she learned there...or if anything comes up that is fearful for her I will always word it as a positive..."hey, that's good that it happened...you got an exposure". mine is also sensitive to clothes....we learned to refer to "GUTI" there...."get used to it"...(and again, because she learned and was told this by someone else it's easier....me coming up with "get used to it" would never fly)...when I say that now she still has issues, but she usually does get used to it!.........but, I'll admit that we do just avoid a lot of the uncomfortable ones as much as possible.

Love Dr. Rahman....Dali museum is free for 1 visit if staying at RMH..so is sunken gardens. Make sure to try to see dolphins at the Pier around 5:30 each night. We were not cured after our visit...but, gained valuable skills. My daughter was afraid of thowing up (would talk about being scared approx. 100 times a day...I counted!)....never hardly brings it up now...fear is still there, but it's better....but, when other ocd things pop up (now scared of concussions)...all I have to say is..."well, you better get this ocd in check because I don't even want to think about how Dr. Rahman would do exposures for concussions!) We would go back for a refresher, but as of right now it's pretty cool that we don't need to

Your story is the same as ours....It even took me a while to believe the ideas of this group when I found it....(antibiotics, ivig, steroids, no pysch meds, etc.)....Every doctor and specialist in my area either did not hear of it or laughed and said, "well, you know it's a very controversial diagnosis and no one is going to treat it based on what the internet says"...ugh! Just wanted to say that you need to take a deep breath, sit back, and really listen to the plans of Dr. T and ideas here...also, realize that you will probably still have some ups and downs (wax/wane) that will continue. Also, if she has ocd specific fears or can't get back to school you might want to schedule an appointment at the Rothman Center in Florida for Exposure therapy...I would schedule it in August because that will give you some time to get her initially better with Dr. T's suggestions. Also, just to offer hope....my daughter was VERY BAD (could not leave my bedroom, go to school, licked food, tics, screaming of stomach and throat pain, INTENSE fear of throwing up and other very unrealistic things...very ocd)...... She is now back to a straight A student, does activities, has great friends...(is still moody, sigh...might be 9 year old hormones!..)..but, is functioning! She even just recovered from strep this week (beautifully) and only missed 1 day of school....prior to that this year she had perfect attendance. We are not "cured"....and we could get bad again, but I know there are options for treatment and I have seen her recover so I know it's possible again.

Have you tried a different antibiotic? ivig? we just started a bad flare and the tics came right back (on monday)....got on a different antibiotic and they stopped. any allergies?....we did not think there were any allergies at all....but, after testing my dd is allergic to cats (we had one), dust (so i dust a lot now) and a few other things also...we NEVER bring up anything about my dd's tics...(but, her tic is the loud throat clearing/grunt)....if your son's is really loud I can see how you can't ignore it...so sorry you are going through all of this....praying the steroid kicks in!

I know first hand with pandas it is near impossible to force anything when they are fearful...but, I always try to remember what they taught with the erp...if you start giving up on one thing, then it will make it easier to give up on more. (now with that said, we have given up on some things to make life easier...but, I never let her know that it's due to the pandas/ocd)...my daughter (who used to LOVE art also became fearful of it) Mine is scared because her ocd makes her think she is swallowing the the paint, glue, chemicals, etc. in the art room...basically the stronger smells make her also think she may have swallowed something poisionous. She has the nicest art teacher, but he HAS to explain things like "make sure you wash your hands if that gets on you...or it's dangerous to swallow this, etc)....so any little comment in class also scares her. I considered pulling her from it and school was okay with it....but, we gave it our best shot and so far she is doing okay with it. What I did to help was I brought glue bottles and paint home from the class...we touched them had them around us, etc....not constantly, but a few times a day and called it our exposure time. I also took her to the classroom after school and we sat in the room..also had her to eat a snack in the room...on a different day after school I had her walk in the class by herself and sit in there by herself for 5 minutes and draw.

Same exact answers as dcmom...we were also there for an EXTREME fear of vomiting.....also with Dr. Rahman who is amazing. I'm still just bitter that there is not a clone of him here in Michigan. We loved it there....I also loved that the parents were involved with the therapy....since the year prior was filled with separation anxiety with my daughter it was the first and only therapy I have ever been able to go to myself and it was beyond helpful for me and my husband to be able to experience a day of PANDAS and then sit down the next morning to talk about it with him and my daughter. Couple of things...if you have other children and go...we were able to leave my son in the waiting room which was great (he is 7)...there is a video type game and tv in there with cartoons on so that was great....but, after the first week we met another family at the RMH so we were able to leave our son with them and we took their daughter (the sibling) when her brother was in treatment. We couldn't do much with my daughter for an entire year (sudden onset March 2011)....so when we went to Rothman in the summer of 2012 it was so nice. It sounds funny to non panda people, but it allowed us to try to get her to do fun things and to deal with the anxiety of the fun things as an additional type of exposure. Now, we are still not 100% (I thought we would be, but we still have ups and downs, stomach and throat pains, anxiety and ocd)...but, all of it is to a much lesser degree than before we went. Make sure your child is in a place that they are ready to work. There was no way we could go in 2011...I knew about Rothman then, but she could not even leave my side and was sooooooooo bad. It took a year of us doing our own type of exposures to slowly get her out and about and in 2012 she was excited and ready to get better.

we didn't do anything with the steroids except antibiotics....we do also do epsom baths, but we always a few times a weeek so we probably did then, too

everyone is different....i am very afraid to try ANY kind of drug/medicine...and unfortunately it's why i'm here...i didn't treat quick enough with antibiotics and my daughter has suffered so much....so very much. We have been into this for 1 1/12 years now....and so far the 5 day steroid burst that I gave my daughter in the beginning of Oct. this year was the best of anything we have tried.....she was BAD...REALLY BAD before the burst so I caved to try it and glad I did....she attended school during the 5 days and I emailed her teachers to warn them to watch for anything out of the normal of her normal anxiety/PANDAS symptoms. During the week she had 2 flight/flight rages (but, we also had those before prior to the steroids the week before which is why we started them). Anyways, 3 days after the burst stopped were THE BEST DAYS since this started...she was 100% back to her pre-panda self for a few days..I LOVED IT!!!!! It has now been 2 months since the burst and she has only had a few down moments and is so much better....but, I can tell it's not going to last (but, still worth it!)....her anxiety decreased, tics were gone, and ocd was SO much better. Again, it's not perfect, but better, and at least I have an idea that ivig might work.

Get on a different antibiotic....be open to ivig now....we are still dealing with crap left over from PANDAS from our totally daughter (who sounded just like yours...very outgoing and then bam! hit with strep)....We also figured it out right away (I googled strep and ocd and figured it out), but I was stupid enough to believe the doctors to not listen to the stuff on the internet....I waited way too long to pay the money to see Dr. T....should have done that in the beginning....don't mess around with anything and treat aggressively now!

Pandas hit with strep (but, didn't know anything about PANDAS)....went for 2 horrible weeks not knowing what was going on and then started zoloft at 20mg....it was REALLY bad for 2 weeks after starting it (but, again, didn't know about pandas)....stayed on that dose for 5 months then upped to 30mg...again REALLY bad for 2 weeks after upping the dose. *Both times the dose increase was just too much at once. We started decreasing her dose over several months (1 mg at a time) until we got down to none....after a week of not taking it her anxiety increased again....so this time I went up drop by drop until she seemed to improve....she is is now seriously taking 4 drops...8mg...and that seems to be the amount that is working best so far (not perfect), but better than the higher doses and better than no dose. (note: she takes liquid and it is mixed with sierra mist so she never knew when I was increasing/decreasing or when she was not taking it b/c I still gave her just the sierra mist). Also...just to note...my daughter's anxiety since this started was VERY high daily...all day long...and there is nothing at all stressful in her life other than PANDAS. My daughter is 9 and 60pounds

We loved Dr. Rahman....but, our mistake was that we did not have a good therapist to continue when we returned.....we tried to continue on our own and I became very knowledgeable as to what needs to be done...but, having the parent be the sole person to motivate for exposures was not good (my daughter is afraid of throwing up so getting her to watch throw up videos (and me being the mom to have her do it) just didn't work as well as if we would have had a good therapist at home set up maybe even for an every-other-week type of appt. to encourage practice/exposures. We might consider going back for a refresher if needed...it was helpful, but when my daughter was exposed to strep again everything was lost....a steroid burst luckily brought her back and she is doing even better (FOR NOW...knock on wood). You'll learn a lot there....I wished I lived in Florida and could always go to Dr. Rahman....just thinking about him I laugh at all of the exposures he has been through himself with our ocd kids!

we had our great days start about 3 days after the steroid burst.....had 2 great days....then 1 bad day again....then a stable month of good....tics even went away for a month, too. We are seeing a slight decline again, but still better than before the burst.

the staff at the RMH are WONDERFUL.....my daughter had an episode at 11:30 at night in our room.....I just carried her outside quickly so we didn't wake others up....everyone there is so understanding (the other parents, too)....most of the kids stay at the hospital so it's mostly parents (mostly moms when we were there)....after 3 weeks we got to know some pretty nice people and I'm usually one to stay to myself....If you want to be alone there are enough rooms to escape to for a break....(small teen room, outside patio, living room, side rooms on each floor w/ a tv, etc.). The walk is nice there...my daughter LOVED catching lizards. I just can't say enough good things about the RMH also...some people told me there was a Panda's child there before us that had a fight or flight episode and the other mom's helped distract and he calmed down faster.

can you please pm me, too!!! I live in Michigan....would love to know more about where to purchase...thanks