jenbug

Wow! What a great example! I recognize some of that especiallyh in my oldest daughter..

Vickie--thanks That is a very helpful list. My son has a few of them, but not as severe as his oldest sister. Hers is definitely OCD. I think hers was less noticeable when she was younger, but got worse over time. Probably due to not getting necessary treatment then. I am going to try to get them into the neuro asap. Waiting is hard for me as I have OCD as well and got it very young too.

Sounds kinda similar to my daughter. She does't get the pimples and does have her period, but she will find food where she can get it..no matter how she gets it despite our efforts to cut down on her sugar intake. I also wonder about the possibility for yeast overgrowth? We use Culturelle and like it.

Thanks for the info! Interesting indeed. My oldest, who I think has PANDAS for sure has some symptoms of sensory stuff as well. She cuts out her tags, has to have socks juuuust right, etc. She is also funny about what she eats....

Okay, I know I have asked a lot onb here about myself and my ODD. Now, my son, who is almost 4, was just dxd with a rapid strep test about month ago. Since about a week before the test and until now, he has been belligerent. I know that most kids act out when they don't feel well, but his is getting to the point where I almost can't swtand him! He is not ticking or obsessing, but he is almost "obsessively naughtyy" if you kwim. Once he decides he wants something or doesn't want to do something (I know is common in childhood to an extent anyhow though) he will NOT stop...he will keep it up almost all day (from the minute he gets up til he goes to bed)or unless I enforce really harsh punishments that I don't like using. for example, this morning he would not get dressed to go outside. The baby and I went out while he screamed and screamed for about 20-30 mins. He just didn't want the clothes on. The way he carries on is soooo dramatic and really really loud. I am sooo embarrassed as my oldest does this too. I realize it could be age-appropriate or learned from the oldest, but I was giving him Motrin all week until today just to see what would happen. Today he is totally different then earlier this week when on the Motrin. I am wondering if he still has strep even after 10 days of treatment...I dont even remember what antibiotic it was (that's bad I know). Anyhow would you seek help for his behaviour? The pediatrician who I thought would work with us just told us to go to a neuro, so I have to do that Monday. Also, it is about a 1-month wait to get to the neuro... Any ideas?

Airial--thanks! I have started dosing my older 2 with ibuprofen twice a day. So far, it sesms as theough they are better with it than without. I am going to stop dosing this weekend for a week to see what happens. In the meantime, I called the ped and she is researching to see what we can do. We can't afford to travel to Dr. K., so she may consult with him and work that way. I also don't like the idea of longterm motrin use...tummy aches=yuck!

I couldn't find anything about doses other than this study...HTH http://clinicaltrials.gov/ct2/show/NCT00453180

I was just reading an interesting article about the pneumococcal(sp?) vaccine. It has supposedly reduced the amount of hospitalizations, etc. does anyonek now if this helps with PANDAS kids/those who already have PANDAS? http://www.medpagetoday.com/InfectiousDisease/Pneumonia/5396

My ODD has a severe allergy to penicillin. From what I have been reading, it is one of the lines of drugs that seem to work best for this. What others work just as good?

Thanks for the info ladies! My ODDs movements are strange at times and she makes really strange faces (my mom said I did too as a kid but have learned to hide it somewhat now) so, it would be nice to see the video of tics v compulsive movements:)

have Tourette's-like symptoms to be considered PANDAS, or is that just one of the symptoms?

((hugs))

What precautions, if any, can you take when giving your child Motrin/ibuprofen on a regular basis (besides the obvious-food). I have decided to try this with my oldest child. My daughter has OCD/Tourettes and pulls her lashes, hair, etc. I am going to be calling Dr. K in the next few weeks too. I feel as though adding Motrin once a day along with food shouldn't be too huge of a risk. I am also wondering if anyone has been to Dr. K, and if so, what does he do...like, what is the "process"? I am wondering if I sould talk to the ped first or go straight to him, and if insurance covers him ( I know it doesn't cover some stuff like IVIG though).

Wow, that is interesting! I didn't realize you could carry it and not be affected! I will have to tell the pediatrician that at next appointment!

EA Mom--Thank you very much! My DS had a rapid strep that was positive about a month ago, but the girls were both negative. is that different than a culture? And, who is Dr. K? Thanks again!

Thanks Peg!

THanks soooooo much! I didn't even know where to start. As far as pneumonia...I am not sure that would show, as I am right now on a 10-day course of Levaquin for ear infection, sinus infection, and bronchitis...

Hello there...I understand your frustratuion about not knowing for adults. I have had OCD from about 8 y/o. It came and went ... I remember one summer being very ocd-ish right during and after a major illness. I don't remember all the symptoms though. Itcame back the worst for me after my oldest was born and some during the pg. If I try to go off my meds I literally make myself worried sick...if that makes sense..My oldest daughter has had OCD/Tourettes/ADHD from a few years yhonger than me. I am hoping that there is some more info on adults with this or who had it for a long time without knowing. I am 33 and was never dxd with it, so I wonder what tests they can perform to see if adults have it/have had it, etc. I am also wondering about clinical trials, etc. For years I have wondered where my OCD and autoimmune stuff has come from. I also felt different from other kids...Anyhow, as far as if it is PANDAS or just learned behavior over the years of having it, I guess either is probably possible...only science can tell. If anyone knows of clinical trials for adults with OCD, please pm me! Thanks

Peggy--Thanks that is why it is so hard for me to find info...As far as the rheumatologist, I am not. It hasn't even been suggested. I got the vitiligo on my left leg when I was a kid. Raynaud's too....I recently gave my pcp info on PANDAS, etc, so I hope maybe she can do some sort of testing for me. What kinds of tests can be done to see if you have PANDAS? It might be worth a try even if I am 33 y/o. Dawn--I live in Western Nebraska...I haven't even seen a neurologist--just been taking fluvoxamine (Luvox) for years. Forgot to mention that "It" came back really bad during my first pregnancy and after in the pospartum period and has been there since....it is very obvious when I even skip more than 1 day of meds..I have lived with this condition for so long that I just got content living with it while the meds work. Maybe it is just regular OCD, but I have a gut feeling it isn't. I remember being really really sick one summer when it came back and tapping my toes and counting a lot, so I am starting to wonder. There are also tons of autoimmune stuff in my family. My grandma had some sort of fever, not sure if rheumatic or scarlet, but she was shut in a dark room for a few days and then got heart trouble afterwards. I forgot to mention I also have a mild hypothyroid issue...there is RA and MS on both sides of familly, as well as tons of psych stuff. I also have unexplained very large hives on me pretty much all the time. Sometimes they are so big that they are the size of grapefruits. I know you all are not docs, and I don't expect a cure or anything but I am just excited to see that there is FINALLY some research being done on this horrible disease and that there is hope!

Hello everyone! My name is Jenny and I have had severe OCD (and possible Tourettes) since I was around 8 y/o. My parents rarely took us kids to the doctor so I do not know for sure if I had strep. I think I was only on antibiotics maybe once in high school... however, I did have a lot of sore throats, cough, etc. I have asthma, vitiligo, Raynaud's phenomenon, etc. My oldest daughter has had similar symptoms with the OCD/Tourettes and ADHD since around 6 or 7 years old. Is it possible for an adult to have PANDAS that was never treated properly? I have been on fluvoxamine for 12+ years and it is no longer working well...doc recently added BuSpar. I have had multiple sore throats tghis flu/cold season and my OCD has really been flaring (hence the need for BuSpar imo). I guess I just want to know if adults can still have this disease even past age of 21? I am 33 now and when I first had symptoms I was in about the 4th grade or so. I don't remember specs or if I was ill, but I know that it got better and went away for a few years, came back, went away, then came back REALLY bad when I was in high school.....any advice is appreciated. I live in a very small part of the country...not sure if the docs are too familiar with this here yet, but I did give my primary and my daughter's ped some printed stuff on ocd and pandas.....Anyhow, thanks for reading! Jenny