Mommy2MCL

My PANDAS specialist mentioned we should start DD on a mouthwash and it should help. He mentioned Listerine because of the active ingredient. As for an actual cleaning you should have some type of prophylactic antibiotic and a loading dose 1 hour before cleaning. Also, I took my youngest to the dentist today and was explaining a bit about my daughter. She said she would be fine with just x rays and an exam for a bit while we get this under control.

Our PANDAS doc drew blood from the whole family. My PANDAS daughter has PANS from a Mycoplasm Pneumonia infection. Her younger brother had higher IgG and IgM Myco numbers. He does not seem to have PANS but I now know to watch him incredibly close. With my daughter we have seen worsening symptoms each time she has flared. I can't imagine her after years of this. Luckily we are treating and hopefully on the right track.

My daughters tonsillectomy was years before her PANDAS diagnosis so I don't have much experience with this.. But have you checked his iron levels? We had a long conversation with our PANDAS doctor about RLS and he mentioned it was basically an iron deficiency and the big pharmaceutical companies play it up for money. It may be something you want to look into. Also we are on a Ferrous Gluotanate, which is an iron supplement (email me for the name if you want it bc I can't remember off the top of my head ) 1x a week. As for antibiotics, I would start them and then get in touch with your dr. This could be a tonsils flare or he could have picked something up in the last 3 weeks.

I just meant that through healing I would hope to see less of a flare as we go through this. We are two months into diagnosis so I may have some misunderstanding or not come across the way I meant it so I apologize. We have had two MAJOR flares due to teeth, so I am preparing for a long road ahead of us...

I am frightened too! We have at least 10 baby teeth... I don't know the answer to that as I am just coming off a flare caused by teeth. But our doctor said increased precaution should be taken anytime you take them to the dentist. Since my daughter is on Zithromax he wants her to take several rounds of Augmnetin before we have a cleaning. I will now also know to call ASAP when it starts again, hopefully it won't I would think as you build immunity the flares should not be as bad... And I really hope that teeth are not always related to a flare. Our Doc suggested NAC to help with inflammation... Any good or bad stories?

Hi Chubbermommy! Yes we gave ibuprofen and it helped. Her tooth cut through prob Sunday or Monday a week ago. She displayed tics we hadn't seen in months, emotional liability, OCD and compulsions. She is on Azithromicin for MycoP. I thought we could handle it and I made the mistake of not calling our specialist until Friday when we saw little improvement. When I called they wanted to stop Zithro and start Augmentin. But by Friday I think she was doing better and putting her back on Augmentin actually caused regression because the tooth was better. Yesterday and today she has been so much better after we restarted Zithro ! WE also let her soak in Epsom Salt. I have read that it has tons of calming properties and figure it can't hurt (I hope) So I am not sure what medicine your DS is on but I would definitely call if you can. My worry is we have only lost 8-10 teeth... How do I deal with this every time.

Yay! I've been wondering about your daughter since your last post. I think you should take it as a sign of a positive treatment. I just wanted to add that while you may see quick progress it can also slow down so please don't be discouraged. To me as I began this disorder I had so much doubt. But each small step of progress helped to diminish that. Thank you for updating.

I would also suggest you have them test for Mycoplasm Pneumonia... I believe you would want them to check IgG and IgM numbers.

I would talk to your Doctor too... We are in the midst of a flare, which I believe could be caused by a front tooth finally cutting through. 5 days in I called and they wanted to change her antibiotic... This is our 1st flare since starting antibiotics so it truly hit me like a train. Looking back I now see her increased anxiety before we fell off the cliff... I will know better next time...

I don't know the answers either as we are only in our 2nd month of treatment. But your story reminds me so much of our story.

Hi Rachel, Before we had a PANDAS diagnosis my daughter had a sinus infection that lasted 6 weeks. For the last 4 she had Zithromax. I saw a dramatic decrease at the end of 4 weeks... In mid December we were given Zithromax for Myco P. And we saw significant improvement in about 10 days. Just remember that anything small counts...

Thanks for the replies!!! We are on Azithromyicin and it has been better than her September flare (when she got a crown). So this is probably day 4 or 5.... Hoping it stops soon. My biggest concern is she has about 12 teeth to lose.... Any ideas on how to stop this each time she loses a tooth. I guess getting her infection numbers today. We actually ran labs today so it will be interesting to see what it comes back as...

DD is diagnosed with PANDAS with main infection being Myco P. The past few days she seems to be in the midst of a flare. I've been racking my brain trying to figure out her trigger... She could have been exposed to a new illness but who knows... School also started and that also could be a trigger but Monday that a tooth that has been vacant for almost a year is finally breaking through. BG- In September DD had a crown put over a cavity that fell out. This resulted in a 5 day flare... Worst we had seen... We didn't realize they were related until we had talked with our PANDAS Dr. Then it made since. So my question is am I just grasping for answers or could our setback be bc of the new tooth... Any one experience this?

I know... I just need to get her in... I think I read it has to do with people who have QT anomalies... Something with the rhythm of the heart. DD's defect will cause blueness in the lips and extremities, extreme fatigue, and loss of appetite... None of which we have seen... Thankfully.

There was a study that came out last year. This is just one of the articles but many come up... I hadn't really thought much of it but in the past 2 days 2 people have posted in a couple of the Facebook Forums I belong too. So that got me googling... http://thechart.blogs.cnn.com/2012/05/16/popular-antibiotic-linked-to-higher-risk-of-heart-disease-death/

Thanks everyone! Yes the dr coded it as OCD & post encephalitis... Someone needs to write a PANDAS for Dummies... Thanks for the advice

Does anyone here have any information? Good/Bad? What does your PANDAS Doc say about long term antibiotics and its effects on the heart? I am FREAKING out because my DD was born with a Congenital Heart Defect, Pulmonary Stenosis. She has had 3 balloon valvuloplasties at 2 days, 13 days and 2 years. At 4 we were cleared to see the cardiologist for 4-5 years. Now she is 8 and has the PANDAS diagnosis.... She was put on 250mg of Zithromax on Dec. 14th and we have taken it daily. Before that we started Augmentin since Nov. 7th... So 1st I am going to message our PANDAS specialist, and next make her an appointment with her cardiologist. Her cardiologist is apart of Texas Children's in Houston and I have heard they pretty much deny the existence of PANDAS. I will email him but what do I say? He is very specialized with what he does but what if he doesn't believe in a PANDAS diagnosis?

I would think the best thing is to find a PANDAS specialist in your area. They can order the blood work to show current or recent infections. If symptoms get better on antibiotics it could be PANDAS. But without blood work you won't know what to treat

Has she had recent blood work? I think you should start there. See if she has any co infections and treat from there. My daughter was on Augmentin for a month and her symptoms stalled. Once bloodwork came back she had an active Mycoplasm & past infections. Once we changed antibiotics we were so much better. Right now she still has a hard blink and that is her only tic left. She had up to 12... And also some leftover anxiety but so much better...

Have you checked to see if the sinus infection has come back? Has he been tested for Myco P? If his symptoms went away on the Suprex it seems that may be your clue towards infection. Good luck!

Could they or should they try her on antibiotics? If the pediatrician acknowledges it why not try to see if there is any relief?

With her symptoms I would call until you can find someone to run the tests. Thoughts and prayers for you and your daughter...

Our PANDAS specialist does not take insurance, like many of them out there. We are new to this and I was wondering if their are any tried and true tips that help the reimbursement claims be processed. We have seen him 2x and once was already denied. I understand that these may not be paid out but if there are things I could do to help it that would be great. Thanks so much! Megan

Have you tested for all co infections? My daughters blood work came back clear for strep (even though she had had it 3 weeks prior) but high IgG and IgM for Myco P. Once we switched to Zithro she has really improved. Also, if you have tested for co-infections and know strep is the culprit. I think right now the main concern would be finding the right antibiotic to start your sons healing process. Or at least find out what his risk are at contracting another infection if the antibiotic is not the right one.

:-(. I have heard that too. I am hopeful that that will not be our case but only time will tell. Have you looked into mold? We have to start that now...