Tamistwins

Ditto on the thanks

Hi Santi, I have left a message for him to call me back but he has not returned my call. That was 2 days ago.

Hi Can anyone help with a better understanding of my results? Both IGM and IGG according to Igenex and CDC are negative, however, I have a lot of INDERTERMINATES plus 2 out of 3 children tested positive. One on Igenex and one regular lyme western from labcorp. IGM 30 kDa + **31 kDa IND **39 kDa IND **41 kDa IND 58 kDa ++ **83-93 kDA IND IGG **39 IND **41 ++ Thanks, Tami

Aww so sorry it does seem like its never ending. Good luck with the T&A. Speedy recovery! Tami

Yes my children are on cipro because their titers were elevated even while being on azithromycin and minocin plus they picked up mycoplasma pneumonia too.

http://www.ncbi.nlm.nih.gov/pubmed/20231435 Induction of TGF-beta1 and TGF-beta1-dependent predominant Th17 differentiation by group A streptococcal infection. Wang B, Dileepan T, Briscoe S, Hyland KA, Kang J, Khoruts A, Cleary PP. not the same team but assuming research along the same lines http://www.ncbi.nlm.nih.gov/pubmed/19940258 Cellular mechanisms of IL-17-induced blood-brain barrier disruption.

Hi Ifran, Those are great questions do you have the doctors email address? It is clear001@umn.edu I think it's best for you to email him hopefully he will answer your questions quickly!

This is the response I got from the doctor explaining his background. He emailed me back same day I emailed him. I am an immunologist who has investigated the immune response to StrepA. Recently we have some results from mouse experiments that suggest that that immune response could explain behavioral changes. There is disagreement in the medical community with regard to whether PANDAS is caused by strep infection, can exacerbate existing OCD, or has nothing to do with it. I believe that at least some cases of OCD is initiated and exacerbated by strep infections. I am a scientist, not a medical doctor and for that reason can not recommend treatment. Moreover, it appears that removal of tonsils does not always eliminate the problem (not carefully studied yet). In short Pandas is still very poorly understood. I hope to test tonsil tissue from pandas cases for a potentially virulent immune cell induced by strep that could open up the brain to autoimmune antibodies as described by Dr. Cunningham. I would need considerable lead time to arrange for the tissue, if your child ultimately has a tonsillectomy.

PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with strep. Many families have found that other things aside from strep can trigger their child such as virus, EBV, mycoplasma pneumonia and even lyme. PITANDS is for other infection triggered agents.

Hi both my children will be having a T&A in December can you send me contact information and I will gladly allow a tissue sample for research. Thank you, Tami

Thank you!

Oh Saidie, I'm so so sorry I know how you feel. It is good that your son expresses how he feels yet how sad it is. I have cried way too many times in front of my children too it is so unbearable at times and just can't be controlled. Up until this point I had nothing good to report. We were at the lowest of lows. I have 3 children with pandas two are confirmed pandas/Lyme. We have tried different antibiotics and ivig numerous times and we still weren't Doing well. My two older children who are 8 just had another ivig on Monday and Tuesday. My son who was my really difficult one because he had strep, mycoplasma, mono and clinical bartonella. Well our immunologist increased his ivig this time from 1.5 kilo per gram to 2.0 kilo per gram and I don't want to jump the gun here but there is an almost immediate improvement in his behavior. No screaming tantrums no meltdowns if he doesn't get immediate gratification, I feel and pray like we are on our way to getting my old sweet natured child back. It's been 3 days of him being compliant. I can't express how i feel. I just hope it lasts. He did develop a neck tic that e didn't have before and I'm not claiming that the bump in the road is over but it's a changed personality for now. And I want to tell you how bad he was. Crazy OCD for years, banging head on hard objects due to terrible strep infection. Demanding, odd, screaming, hitting, talking back, bed wetting, I pray he will continue to heal. My daughter his twin only got the 1.5 g and she is horrible, nasty, defiant. It's unbelievable. I wonder if the 1.5 g only stirs things up but isn't enough to help. I don't know just wondering, I hope things improve for you and hopefully the Zithromax will help. Tami

My children also have low strep titers. I was told by both Dr. T and Dr. B not to immunize any further. It wreaks havoc on their already compromised immune systems.

Hi if you know which lab work to ask for can you get another doctor to order the labs for you? If yes I can tell you what blood work to request. Email me at tamistwins@gmail.com Gl, Tami

This is great info to know. Is there a box or something on the form? No you just need to tell the person who does your paperwork that you want results sent to you .

I always get lab results sent directly to me as well as to the doctor, you need to request it at time of the draw.

You should call the lab directly to have them mail you the results.

THank you so much Alex, I haven't had a chance to review the links yet but I greatly appreciate all the information. How is your son doing after the T&A?

Hi everyone, I was wondering if anyone has any links to specific articles to bring to an ENT in preparation for a tonsillectomy/adenoidectomy. I was going to go to a surgeon who is aware of PANDAS, but, I thought I would first try to go to someone in state who actually removed my tonsils so many years ago. He is a very good surgeon but his bed side manner isn't the best. I want to be prepared to explain why I want the surgery for both my children even if on appearance the tonsils don't seem enlarged. Any help would be greatly appreciated! Thank you, Tami

My son had issues with mycoplasma. We treated with biaxin and other meds he still had issues. I think we finally had a negative result but now again while being treated with minocycline and rifampin he now has a new infection ugh I haven't a clue y some kids can't get rid of it.

Tami--how far are you from new Haven? Dr. Jones is excellent. Hi I have been to dr. jones with my older two I was looking for someone closer by, thanks for the recommendation!

Thank you Wendy, I hope your children continue to heal quickly.

Thank you Wendy! My little one has been on antibiotics from a young age due to PANDAS so hopefully that was helping him to some extent. BUt I do see his separation anxiety and ocd getting worse at times. He is different from my other two, he is very verbal which is great because he can tell me his symptoms. He waxes and wanes, for the most part he is such a pleasure and happy child. I am speaking with Rose now thank you for her number

This sounds alot like my son, he has awful ocd and is so nasty, rages nothing like the kid he used to be. He is 8. Have you tested for tic borne illnesses. We have documented repetitive and frequent strep infections, definately pandas but we are also treating clinically for bartonella since regular pandas treatment wasn't doing the trick. Still praying for a miracle. I wish you and your family speedy healing, tami