michiganpandas

nothing in michigan....most here go with Dr. T (phone consult)...or Dr. K

we started zoloft when pandas first hit and it was bad....my daughter got A LOT worst after starting the zoloft....(sounds a lot like your daughter)....all doctors said to increase the zoloft.....i stayed the same dose (20mg)....then she finally got back after about 3 weeks to just exhibiting the bad pandas that we started out with in the beginning so we stayed at that dose....finally after a few months I caved and upped the zoloft to 30 mg and again she was bad for 2 weeks then back to her new pandas normal.....after 9 months I finally started to slowly lower the zoloft and actually saw some improvements!!!! (not totally rid of ocd and anxiety) but, I am glad to have her off of it....so I would suggest to get off or even just keep it at .5 ml (seriously, when we were lowering it she actually did well at this VERY low dose).....your child will probably not be better right away, but just realize that it takes time.

I am always afraid to write anything positive...but, yes we are better....not perfect....but, in a better place.

I saw this, too.....and yes...my daughter has a horrible time swallowing....but, it is mostly when she is nervous/anxiety is high. This is what also contributes to her fear of throwing up

Right now our whole family is driving home from the Florida 3week therapy....I sat it up by just calling...dr.storch called to ask some questions...wanting to make sure she was ready for therapy...after the appt. was made we then scheduled our stay at the Ronald McDonald house...it was beyond amazing and helpful....I am sad to leave...our basic overall lesson that we learned from our appointments was to not only expose her to her fears (which we were doing....but, they helped it be more intense)....but, when she does get OCD worries to basically just agree with her that if it does happen then she can handle it....for example my daughter's fear is throwing up....so now when she says she is scared of throwing up we now respond to her with "if you do we will help clean it up!".....prior to therapy we would always reassure her that she was not going to throw up...which totally made her OCD increase and ask us all day if she was safe from throwing up.....it seems so easy...but would have been horrible to do to her initially without therapy....she knows why we are responding that way. Anyways...if you have any questions about the program or stay there let me know.....I took a ton of pics of the Ronald McDonald house and again just loved staying there (and I am high maintenance myself!) 2 hours and 45 minutes now left for our drive home to michigan

My dd does the exact same thing...it is always when her anxiety is high

I know it is rude to bash doctors.....but, do not..I repeat ..do not ....go to dr. Freij!

This is what I knowi need to deal with.....the ups never last , but when it is going well for a good amount of time it makes the blips even harder! I am not at the age of hormones yet, but I wonder if that plays a role,too...hang in there....the ups may never last, but they do return Ha!..editing to add that my daughter is not at the age of hormones yet

My plan was to try to get off the Zoloft and antibiotics before the 3 weeks here in Florida....I also really wanted to do ivig also before...but could not get brave enough to attempt scheduling it...my daughters biggest fear..and I mean it was huge..was throwing up so I know that would have put her anxiety level off the charts....but now 2weeks here in Florida has helped so much that my daughter would now accept the risk of throwing up as a good exposure to conquer so if the ivig is needed she could for sure hanle it.. Seriously, I totally know how you feel about the Zoloft..it is scary to mess with things...but it is an awesome feeling each time we lowered it and to see that she was ok....I just went really slow...also I did not tell my daughter when I lowered it until we were here in Florida.

Hi.......we probably could be your control study!....my daughter was exactly the same as you described regarding anxiety, OCD, and tics...but her OCD was pretty severe with fears..not compulsions.....only other difference is we are only 1 1/2 years into this.....anyways...we did not do ivig, but it is still an option I often think about......we are currently into week 2 of storch's program here in Florida and are very very pleased.....I hope I will be able to say she is 100percent back to herself by the end of next week...but, even if not we sure are a lot farther than I ever dreamed compared to last year.......what I wanted you to know is that I have been weaning my daughter off of Zoloft 1.5ml since January...I was scared to do so because her anxiety was sooooo bad and all docs said to actually increase the dosage...well, when I started decreasing she actually showed improvements!,,..not huge ones...but best of all did not get worse.....I went really slow and then when school was out I went a little faster....usually on the first day I deceased she would seem to have more stomach pains...but it only lasted a day (and she always complains of stomach pains anyways)....she is only on .3ml now , off antibiotics and I am so happy.....so best of luck when you do decrease and so glad your daughter is better!!!!

My daughter (started Pandas last year w/ sudden onset) had low IgM.....just did a check again and it's even lower....Dr. T said that IgM is not helped with ivig. We have no current infections that are showing up...my daughter is getting better with time it is just slooooooooooooow progress w/ lots of ups and downs with anxiety/ocd.....but, what is important is that she has learned to try to deal with it... She was on antibiotics from Nov.--May (azit. 3 x's per week) and now i'm giving her a break in the summer.

PowPow....we will be in Florida next week for the 3 weeks...did you start the antibiotics while there or after the ocd intensive?....I'm wondering if the therapy alone made a big difference or was it the combo? My daughter was on azit 250 3 x's per week for 6 months..I think it helped maintain, but she still has anxiety and ocd...I took her off the antibiotics 4 weeks ago and see no difference.....just trying to prepare myself if they think the everyday azit will help....Glad to hear of the improvements

We do azit. 3 x's per week...I would try that to keep her protected. Homebound school is an option...but, if she emotionally can get there then go for it

My non pandas (yet) son has had 2 episodes with non stop spitting...i can't tell if it's a tic, allergies, or start of pandas.. so far for both times i took him to a clinic and they gave him 5 days of azit...and so far it helped...but, i really can tell he can't help it and it really does seem to so far coincide with the spring weather/allergies

My daughter also started the strange licking and eating with her food...that broke my heart to watch her like that...but, i didn't say anything to her about it..until she was ready then addressed it....also, she would do the spitting, too...everything for my daughter was related the ocd fear of throwing up...getting sick from eating unhealthy foods...and fear of swallowing chemicals/soap, etc. she also would chew on her clothes like crazy.

This is exactly how my daughter started..SAME PROBLEMS....including the throat clearing,sep.anxiety and fear of eating and panic attacks along with contant anxiety which caused dizziness and stomach aches, etc.. (and yes, we tested pos for strep...and also a year prior had a tick removed)...i don't have a lot of time to write at the moment...but, as for the eating what worked for us in the beginning to help the issue is to NOT make food an issue...i never talked about it..allowed her to watch a lot of tv (she would not leave my bedroom) so i would put food i knew she would eat that she thought was healthy right next to her. As for antibiotics...make sure you have her stay on as long of a course as possible (i did not do this..i listened to her doctors..BIGGEST mistake!!!)...get a pandas specialist! also...my daughter was homebound schooled and i slowly eased her back before the end of the year....it was BAD!....but, my daughter did get to about 80-90% better/back to normal....we are just now working on the ocd fears of the throwing up (still)

Hi...there are exceptions with my daughter...but, usually she tics with her throat clearing when nervous (and sometimes that can also be when playing..due to ocd fears she is not nervous about rational things)....also, watching tv sometimes.....but, video games and reading are usually two things she can do that I don't hear the tic. I really hate all meds and would never want to suggest something and then have it be bad for another child...but, just wanted you to know that the atarax does not make my daughter tired (although it does say it can cause drowsiness/dizziness)....I only give her a minimal amount (not the suggested for her weight, but less)....she is an ice skater and has taken it before skating and has had no problems. What I think was helpful about it is that it covered many areas of what the problem might be....anti-histamine (for inflammation/allergies)...and anxiety...but, not addicting....and also clears up some (if any) mucous that could cause a tickle in the throat. Sorry you are having to deal with it....It is so hard to hear it (my daughter's can get sooooo loud sometimes...this is NOT her...but, this is how hers sounds when she has it....http://www.youtube.com/watch?v=7T87zXFs4MM also...my daughter had it bad and cleared more times...and the atarax brought it down A LOT...but, when my son got sick 2 weeks ago it started again...I also started the atarax and it seems to be helping. (I only gave her 1 ml per day for the days she seemed to need it)

I was VERY scared about this, too...and again, we deal with the same thing....always slightly anxious and same throwing up fear...I don't have any real advice other than to let you know that my daughter had 2 filled this month and although nervous she did get past it a lot better than I thought she would....here is what we did.. 1. did not mention when the apt. was until the day of it so she would not get more nervous (only on that day) 2. told her what to expect 3. had the ipad there for her to watch something else 4. they did not give her a shot...I think they used a laser or something....but, it was a lot less stressful 5. reward for afterwards The biggest scare for her was if she was going to get a shot...and while getting them filled it looked like smoke coming from her mouth during it and I didn't think to warn her about that .....that is when she started throat clearing ticcing again (which she always does when nervous)..but, it was sad to see her doing that with her mouth wide open at the same time. anyways, we didn't do much....and no extra drugs or meds...and got through it!!!!....but, I will say that it probably would not hurt to get the extra relaxing meds just to be safe!

we tried claritin for my son...it did nothing....and my daughter (pandas) is just like the others...does not tic if occupied...but, it got really bad in January where it was non-stop (as opposed to non-stop when not occupied)...my son was also non-stop for months....the atarax helped both....It is my thought that the atarax helped bring down inflammation, it helped break up the feeling in the throat,and also helped with anxiety...and I think this helped get rid of the non-stop/constant tic.

other random things that seem to help with the throat clearing are less milk/dairy let me know if you try the atarax....i have been so excited that it helped (and it also seemed to really help my pandas daughter a lot with anxiety, too)....she stopped taking the atarax about 2 weeks ago and her anxiety has been at it's lowest level since thisall started last year.....she had her first slumber party at a house since this started last year when she couldn't even leave my side......she also is now taking the bus home from school...I could not be more happy! (and to not hear the throat being cleared EVERY minute is beyond exciting!) KNOCKING ON WOOD/PRAYING that it continues

Hi...I have one PANDAS child who has had this (ESPECIALLY when nervous it shows up)...but, I also have another non-pandas child (at least non pandas for now) who has had this also...BOTH have been helped with a medication called Atarax...they both weigh about 50 pounds and I gave them no more than 10 mls per day (I usually gave them about 3 or 4mls per day) for about 3 weeks.....my son had the tic REALLY bad for about 3 months and the Atarax got rid of it in about 1 week...and it has not returned ....my daughter had it only when nervous, but then started really ticcing bad January for 3 weeks...then I started the Atarax and again it stopped in about 1 week. Atarax is an antihistamine and is also for anxiety. please note...that this was a very old school doctor from a clinic that randomly prescribed this for my son when I told him about the tic...he said to give it to him 3 x's per day (4 mls) for 10 days and then continue at night for a month....(but, i'm so anti meds that i did less and was soooooooo pleased that it helped!!!)

I agree with dcmom's advice....it helped us....and also get the book "What to do when you worry too much".....we read it every night and go over the tips in the book.

Hi....just quick...but, don't go to any infectious disease doctor at beaumont....very ignorant about pandas and gave my daughter a pet scan that they don't even know how to interpret....waste of time....go to the doctors mentioned above.....great that you found this all out right away.

this is exactly what happened to my daughter....totally normal and then suddenly living in a nightmare....so glad you figured it out faster than us....my daughter went for 3 weeks w/o knowing what was happening....there are different routes you can go...but, antibiotics are the first step and great that you figured this out so fast. praying for you!

Hi....The ocd is the only thing that is lingering..but, it is better ....i think the zoloft increase helped push her to 90% (along with exposing her (slowly) to to her two main fears...(got that idea from you) and the placebo effect that we are trying due to her doctor throwing that idea onto her (it's not hurting...maybe it's helping? not sure)..... She is (KNOCKING ON WOOD) going to school and enjoying it and when she does worry at home she calms herself down very quickly....the worry times are few and far between.... Since we have not really been on antibiotics at all I just wonder if it might be that extra..also, if she DOES get sick during this first month of school it might set her back more than it would if she had a longer run of success so my thought was to try to use the azith. just for a way to prevent any sickness now.