tired mom

From a woman Dr. in Jersey who CLAIMS to be a PANDAS expert...Don't see a correlation between rages and Pandas. Also did not seem to think that my 8 year old niece who began to exhibit the same exact symptoms as my daughter could have gotten it from her.(My daughter lived there for 9 months due to contamination fears in our home) Saved the best for last..Took my daughter to a childrens service center when she was 10 and had severe ocd symptoms that came on very quickly and I had no clue as to what was happening to her and after an hour meeting with the director of the center she told me ...there is nothing wrong with your daughter she is just trying to control you...2 weeks later she lived with my mom for 6 months because she was unable to function in our home.

philamom-my daughter as a small child has had a history of throat infectons and continues to now. She was never swabbed when she was younger because ear infections always accompanied the sore throat and an antibiotic was always prescribed. She has not tested positive for strep lately but she still has high myco levels. I must add that my daughter was a very severe case and 3 times since the age of 10 she needed to stay with family for an extended period of time. She was disfunctional in her home envirorment and she perceived me as her trigger. It was a difficult time and it is hard for me at this time to rehash those days..Maybe someday I will be able to share....time heals. I must add that if someone 8 years ago had the knowledge I do now I WOULD have done pex in a heartbeat and been able to save a childhood.

Jag 10-It is my daughter she is speaking of. The dramatic change came at 18 with no meds involved. As one of the Pandas docs said to me...IT DOES GET BETTER to a much more manageable degree with some flare ups.From my experience and this is just my take on it..The point we are at now the flare ups are so minor that meds would NOT be warranted. If you read Swedo's literature she mentions 50% of Panda's children outgrow it by LATE adolescence. I believe that we have been fortunate to have fallen into that 50%.

My daughters throat has looked like that many times and came back neg. It is painful and I too have been thrown by the neg.culture. After dealing with this so long and knowing you are almost 16 I can tell you it gets so much easier with age. My daughter is now 18 and in the last few month I have seen dramatic changes with no treatment.Your maturity at such a young age can only speed your recovery. Stay focused on things that make you happy.

Eight years ago I lived minute by minute and could not allow myself to think about the future. It was so scary to think about what could be. If PANDAS was rated on a scale of 1 to 10 with ten being the worst I can say my daughter was a 15. The scars take long to heal and I am still at that stage. The child I watched grow and suffer is away at college and enjoying life the way it was meant to be. It is not 100% but pretty close and to tell you the truth I really don't remember what 100% would look like. There is a light at the end of the tunnel, but it is a very long tunnel.

This is a hard one that I personally feel you are the only one to answer that question. You know him better then anyone and deep down do you feel it is an empty threat? Anyone in the professional field will tell you if he threatens to hurt himself or someone else then seek medical attention. We all know that really does not work. I hope you find the answer to get through the week. I must add with all of the symptoms, manipulating is at he top of my list.

Good post Vickie. We have not went for the Big Guns but I can relate to what a financial impact this can have on a family.I was fortunate to have the means to pay for seeking help but in all honesty this forum has been the most healing. It is nice to touch base with a Pandas Dr. and talk with someone who truly understands but in the end you come home and feel some sense of loss because you realize that these specialists are not as accessible as your regular Dr. and much further away. The information provided on this forum is priceless!!!

Hang on. Easier said then done huh? I believe your son is older, Right? My dd is now 18 and last spring is when she seemed to have her( Hopefully last) meltdown in her room. So frightening to handle alone but I must admit at those times I did not want my husband to intervene,it just complicated things and he does not have the patience. The waiting is the hardest part but there is healing. So again, just hang on..

I could not help but tear up as I read your update. I am familiar to all the pain and suffering you and your family have endured. This is a perfect example that we should not have to wait for a miracle just receive proper treatment. I hope things continue to heal for you and your son.

I have been there many times and have hit that same brick wall. It is so very frustating to explain something we know is causing our childs symptoms and have them respond so matter-of-factly that abxs. will not help the OCD. Don't you just want to look them in the eye and throw all the medical research at them and say "Duh!" I wish they could explain how The OCD is gone or a much lesser degree when an exacerbation has passed. A true case of OCD does not lay dormant and act up randomly. What frustrates me the most is the fact that they would shove a mind altering drug down our kids throat and not be willing to try a trial basis abxs.

Linda I can tell the wheels are spinning in your head and your on the edge. I wonder about the things you posted also. I have learned so much from this forum in the last year and I have to admit at times I felt so stupid. I felt stupid because I never realized that the sibbling rate was so high. My daughter is now 18 and my son is 14. My daughter is the one who got sucked into this disorder but her symptoms were severe ocd and rage and anxiety, I have never dealt with tics. With that being said, when my son was 10 and had an eye tic and other tics I chalked it up to all the stress in the home at the time. What I am trying to say is he is fine. My daughters symptoms were over the top and my sons extremely mild. It was 4 years ago he had some tics and he has not shown any other symptoms and has never been treated with long term abxs. My question is how can it affect one child so bad and the other one mild.

So true about not being black and white. To add to that no treatment seems to be cut and dry! At least all the experts seem to be in the same book, not necessarily on the same page. Not yet anyway.

I am only speaking from my own experience with dealing with myco. It has now been 1 year and as of last month my dd's level were IgG 3.0 and IgM 2000. Last year they were 5.0 and 3200. She was treated with 12 weeks biaxin and one month zith. I think it takes like "forever" to see normal range. So I really don't know how you would clear a myco infection.

I think it would fall under the catagory of Pitands. Same symptoms different name. The IgG is positive but that could represent a recent or active infection. It seems to take a long time for levels to get back to normal.

I am right here with you feeling your pain. Do a search about an e-mail " Life on a Train". It is one of the most beautiful e-mails I have ever received. Anyway, last year during my then 17 year old daughters exacerbation I told my sister I feel like it is time for me to get off the train. Somehow we get the strength to keep going and searching and someday we will look back and realize how strong we were..not weak..

My daughter had alopecia when she was 6. It only happened once and was a confirmed case of alopecia not hair pulling. Although this happened many years ago for some reason I still hold onto the index card on which I wrote..Broke out in hives 2 weeks prior, hair had a foul smell and 2 days later she had a perfect bald circle on the crown of her head. I still remember it was Easter Sunday and she was sitting on my lap in church and rested her head against me. Her hair should have smelled like Johnsons baby shampoo but instead it was a sour or fungal smell.Two days later there it was. Weird. No pandas then...not yet.

Glad to hear she had a great time. Hope it just keeps getting better.

It sounds like your dd's OCD is pretty intense now. I know when my dd's OCD was really bad her psyc kept increasing the Zoloft and when it was over 100mg I just decreased it and then stopped it. It did nothing at all for her. I know the frustration you feel but you are on the right track. It will get better.

Happy Birthday little man....

We are all there for you so no need to feel alone. I know that is easier said then done because everyone knows that feeling of total despair. I am so grateful for this forum and everyones kind words that I don't know how I survived all the years before I found this forum. That is when I felt helplessly alone .

So happy for you!!

My daughter had has bouts with sweating issues. It was not so much as night sweats ,more of an issue of excessive sweating. It was not like sweat pouring down her face it was more of having clammy hands all the time and needing to change her shirt often because she would sweat while not exerting herself. She would sweat more then the norm after a run or trip to gym. Last year it was a pretty major issue and not so much anymore. I would guess in her case with her myco levels being high the body needed some form of release of all the toxins.

My daughter in not autistic but when she had her first exacerbation at the age of 10 I remember thinking (did not know of pandas then)her behavior was very similar to autism. I do believe that Pandas resembles autism.

For myco have IgG and IgM levels tested. If it is myco then I would go with Biaxin. I will tell you it is a very hard bugger to treat. My dd levels still are on the high end but after a year they are slowly coming down and the symptoms are at a minimal right now. (Hope I did not just jinx myself)

Adding Chris and your family to my prayers.God Bless!!