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Hi! My name is Michelle and I have just come across this site and hope that someone could help. My daughter is 15 years old and had PANDAS all through her elementary school years. We would know she had strep before her throat even started hurting. Her sentences would always start with the words, " do you think it's okay..." We would go straight for a throat culture and it would be strep. Her OCD behavior would continue until she had been on antibiotics for a while. Until we figured out it was the strep that was causing this behavior, we thought our child was going crazy. Well, here's my concern now that she is a teen. For the past year, she has been in and out of the hospital on the child behavioral unit. She is back again and is on suicide watch. She was diagnosed with major depression, eating disorder, suicidal and a cutter. She obsesses on all of these behaviors. She has tried Zoloft and Prozac and neither helped. This visit she is starting Effexor. Last night I started wondering if there is any connection to PANDAS and the behaviors that she is now experiencing.

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Absolutely. I would turn every stone to rule out every infection on this planet before accepting a purely 'mental' diagnosis. I missed so many of those cues for years, the fears, the paranoia, the obsessions....always thinking that they were just a phase that my very bright, imaginative daughter was going through. When a teacher complained about her humming in class, I just thought it was because she loves music and wasn't particularly challenged in school. I missed so many cues because I did not know one thing about ocd and tics. As she got older and the tantrums grew more intense and the behaviours became more bizarre and the emotions became more unstable, well, I really wasn't sure if it was hormones or if I should start to worry about a bigger problem. By age 13, we clearly had a big problem and I kept telling the doctors that there was a pattern to it. I just couldn't figure out what triggered the pattern. And I could not find a doctor who would listen to me that when I said there was a pattern. Finally, at 16, we know that she has several triggers that set off an autoimmune reaction....PANS. We went through the hospitalization and much of what you mentioned and none of the doctors at the major university hospital helped us with anything. They simply wanted to drug the issues. Fortunately, our local PA ran infection panels and we were able to start treating the triggers. And guess what? My daughter is much better! We are early in our journey (and it will be a long one) but I see that we are finally on the right road. Get your daughter tested ASAP! Do NOT accept that she is destined to live like this. There is hope.

QueenMother

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Michelle,

I sent you a private message so check your mailbox.

QM

 

 

Michelle,

I sent you a private message so check your mailbox.

QM

I can not thank you enough for the hope that you have sent me! I will not stop until every every test has been run. I read the book, Saving Sammy, years ago and woke up yesterday morning with it on my mind. I began searching the web and found this site. I feel that my daughter is "different" from the other kids at the hospital. Even the doctor says that she notices mood swings that she feels are triggered but don't know what is triggering them. If we can't find the answers while she is on the unit, I found a doctor about 30 minutes from here that works with PANDAS patients. That will be my next visit.

Edited by pchelle
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Hi, My name is Mary. I have a fairly new diagnosed teen daughter, age 16.

She was diagnosed with severe depression in 2011 and OCD in 2012 and was well managed with 200mg zoloft. In January 2013, she got mono and her depression and OCD symptoms returned with suicidal thoughts and cutting. It has been up & down for 5 months. She was hospitalized inpatient in March and then put in a partial program. She has missed a lot of school and one of her triggers is school stress. She has a great therapist she sees weekly and a great prescriber who knows PANDAS and diagnosed her with it. She is currently taking augmentin, aleve, probiotic 2x/day but this has been on and off. She is on 200 mg zoloft, 10 mg ability, 50 mg trazadone and 10 mg amitryptyline (for headaches). She is also on some supplements.

It has been a rollercoaster ride. I would like to talk to other parents going through this, to hear their story and treatment ideas and for support. Feel free to message me. Thanks :)

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Hi!

I am so sorry for everything you are going through! It sounds so much like my dd's story who is 15. I posted last week for the first time and as I read you story, I thought I was reading my own post. I am heading to my first doctor visit today to get the ball rolling. I don't even know if she has PANDAS, but she did suffer with it all through her elementary years. She has now been diagnosed with severe depression, she is cutting and has constant suicidal thoughts. She just got out of the hospital last week and they changed her medicine again. They got her off the prozac and started effexor and abilify. I am so nervous that these rx are wrong if we are dealing with PANDAS. She also has missed 70 days of school since December and trying to catch up is a huge stress. I will keep you posted as we begin our journey. I will keep your family in my prayers

 

Pchelle

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  • 2 weeks later...

I, too, would check every single possible infection, and I would also look into alternative treatment, as well. We did not know our DS, who was dx with Asperger's, really had PANS until he was 15, and ended up in a psych hospital, destroying the house, etc. And, the only reason we put 2 and 2 together, was because of his brother's sudden onset 5 years earlier (and still took 4 years to get a dx.)

 

I would look at the possibilty of strep, viruses (don't let them tell you that IgG doesn't matter, because it does when it's high), lyme, bartonella, babesia, erlichiosis, rocky mt. spotted fever, immunizations, giardia, h-pylori, c-diff, mycoplasma pneumonia, and more.

 

Do you have, or know of an LLMD? So many of us have found that lyme is involved, and honestly, they are the only ones who can really know what to do if it is lyme and co-infections. It's terribly important that you deal with possible yeast (caused by methylation issues and abx).

 

I was going to PM, but looks like there are several people here who are new, so here are my recommendations:

 

1) Test for the above infections...you might be able to get your PCP to do the testing.

 

2) See if your PCP will do an immunological workup, if not get an appointment with a PANS friendly immunologist (listed at the top of the PANS forum)

 

3) Consider seeing an LLMD to make sure that lyme and co-infections are not a part of this. Remember that, even if Lyme, bartonella, babesia, erlichiosis, RMSF test negative, there are lots of false negatives, so sometimes it needs to be dx clinically. If your child is in and out of psych hospitals, it's important to cover all bases.

 

4) Consider alternative medicine. We have used ART, chiropractics, homeopathy, acupuncture. Not only do these help treat the underlying conditions, but they also help with the immune system. These alternative treatments have made a HUGE difference for my family, but you don't need to do all of them...just one or 2.

 

While you're at it, consider the methylation...how the body is able to rid itself of toxins...is important. Your PCP can run a simple MTHFR test, and if it comes back positive for the mutation (which i suspect it might), post it on the PANS forum, and members there can help you figure out what to do next.

 

5) Make sure you really, really support the gut. The gut is the 2nd brain, and actually there is brain tissue in the gut. So, probiotics, good diet, all will make a difference.

 

 

This is where I would suggest you start, based on personal experience.

Edited by tpotter
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My 16 year old recently had strep. Within in weeks she stopped her school work was sore all over aggressive and raging. She spat on members of our family. The look on her face was as if she couldn't understand what you were saying.. She did a second round if higher antibiotics. We showed moderate improvement. We did additional blood test her ANA was 1:640. They are saying she is depressed. I don't buy it. ???????

 

What is an LLMB.? And an mthfr

 

They are telling me to treat with anti depressants and watch the ANA?

She is feeling better now that school is out.

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Thank you for all of the great info! I am still waiting for a call back from Dr O'Conner's office to get this started. I will make sure that all of the test you recommended are run. I will also research the methylation and work on the "gut" you suggested too. I have read how important that is, but out of nowhere in December, she decided that she would no longer eat meat. She is now a vegetarian (not that she eats veggies) and I know that her body is lacking so many nutrients. I will keep you posted and do my research!! Thanks

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Hello My sweet sis. It was so good to see you all this weekend! We are gonna get our babies well!!! I am so thankful you found this site. All of these years of our kids going through these Horrific problems and we thought we were the only ones. It isn't just our family having "crazy" genes! Not that we are "normal" whatever that may be. :wacko: There are amazing parents on here and I thank the Lord for leading us here to them. We finally have hope...all of us. Thanks to all and I love you Michelle! My DN and DS are gonna get well. :D Call me when you get home I got some great info from an angel of a mom on here that responded to my post.

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Hey Sis! Be sure and read "Success Stories?" posted on June 12. Great info and hope!! Did your DS tell you that he came by mama's house to say goodbye to my DD when he woke up? (at 12:30 am) I KNOW that it took everything he had to get himself there. He feels so responsible for her well-being while we are in town. They have such a bond and want so bad to be there for each other. Don't stop searching for a doctor in Alabama. Call UAB...there has to be someone at that huge research hospital.

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  • 1 month later...

 

My name is Frank, I live in the San Francisco Bay Area. My daughter is 15 years old. I suspect she has Pandas. She is high functioning Autistic. Was doing well till she turned 14. Had a couple of seizures shortly after her birthday. Then her behavior changed drastically. She became very defiant, destructive and violent. Had to take her out of school because she refused to follow instructions, was harming other students and teachers,and destroying property. Lots of OCD. A couple run-ins with police due to running into traffic and refusing to comply with requests to come to safety. Became obsessed with reorganizing the house and destroying and throwing things away. Had to move all our things into the garage and lock it. Also locked all kitchen cabinets and our bedroom door. Living room and dining area became a "no mans land". My wife and I eat upstairs with my sister-i-law's family. We bring our daughter her meals downstairs. Put her on zoloft, respital, had her see a DAN doctor. did extensive tests, blood, heavy metals, stool urine. Found she had heavy metals, also parasites and fungus infections. Test for Pandas was negative. Had her on a GFCF diet, Celation therapy. I'm not going to get into alot of specifics here as don't have all the data to hand at the moment. She was taking a lot of vitamins and also oxytocin to balance her hormones. Things did improve slightly for a while but she has regressed recently. Lots of OCD again. She is even aware that this had gone away and has come back again and wonders why. She refers to her OCD behavior as "back and forth". She can be calm for hours in the afternoon, listening to music, playing piano or studying Japanese (something she decided to do on her own). But then in the evening, things change. Its starts with repetitive questioning for which there are no answers, yet she demands answers and gets very anxious if we don't come up with the right one. This will continue until she finally goes to sleep. Another thing she does is blow her nose constantly for hours or days. Nothing relieves it and then it just goes away. We thought for years it was an allergy but now I'm thinking it might be a tic. We are at a loss as to what to do next. Nothing seems to really a change things for very long before she reverts back. Pandas just seems to indicate to me as something we should look into. Your site has a wealth of data regarding this subject which I've just discovered. Was hoping someone might have some suggestions of what we could do to as a next course of action. Thank you for your time.

 

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My name is Frank, I live in the San Francisco Bay Area. My daughter is 15 years old. I suspect she has Pandas. She is high functioning Autistic. Was doing well till she turned 14. Had a couple of seizures shortly after her birthday. Then her behavior changed drastically. She became very defiant, destructive and violent. Had to take her out of school because she refused to follow instructions, was harming other students and teachers,and destroying property. Lots of OCD. A couple run-ins with police due to running into traffic and refusing to comply with requests to come to safety. Became obsessed with reorganizing the house and destroying and throwing things away. Had to move all our things into the garage and lock it. Also locked all kitchen cabinets and our bedroom door. Living room and dining area became a "no mans land". My wife and I eat upstairs with my sister-i-law's family. We bring our daughter her meals downstairs. Put her on zoloft, respital, had her see a DAN doctor. did extensive tests, blood, heavy metals, stool urine. Found she had heavy metals, also parasites and fungus infections. Test for Pandas was negative. Had her on a GFCF diet, Celation therapy. I'm not going to get into alot of specifics here as don't have all the data to hand at the moment. She was taking a lot of vitamins and also oxytocin to balance her hormones. Things did improve slightly for a while but she has regressed recently. Lots of OCD again. She is even aware that this had gone away and has come back again and wonders why. She refers to her OCD behavior as "back and forth". She can be calm for hours in the afternoon, listening to music, playing piano or studying Japanese (something she decided to do on her own). But then in the evening, things change. Its starts with repetitive questioning for which there are no answers, yet she demands answers and gets very anxious if we don't come up with the right one. This will continue until she finally goes to sleep. Another thing she does is blow her nose constantly for hours or days. Nothing relieves it and then it just goes away. We thought for years it was an allergy but now I'm thinking it might be a tic. We are at a loss as to what to do next. Nothing seems to really a change things for very long before she reverts back. Pandas just seems to indicate to me as something we should look into. Your site has a wealth of data regarding this subject which I've just discovered. Was hoping someone might have some suggestions of what we could do to as a next course of action. Thank you for your time.

I think that, since you have seen these signs of PANDAS, the first step would be to either 1) confirm it or 2) rule it out. Since your DD has autism, do you already have a DAN! doctor in your cadre of caregivers? Many DAN's are fairly PANDAS-savvy or at least PANDAS-agnostic and will walk this journey with you. Or, you can check into the pinned threads on the PANDAS forum of this site and find PANDAS doctors in your area and make an appointment with one of them. Basically, the typical, introductory testing includes an immune panel which will help identify any atypical antibody issues (ASO, anti-dnase-b, myco p), etc.

 

The other thing I would advocate sooner rather than later is to begin some ERP (exposure response prevention) therapy for the OCD behaviors as, particularly in comorbidity with ASDs, it can nest in quite stubbornly if not met with effective, therapeutic responses. For instance, when your DD is insisting on asking repetitive questions and getting repetitive, specific answers, and you endeavor to give her those answers when and how she demands them, you are unwittingly aiding, abetting and potentially strengthening the OCD. ERP would, rather, instruct you to not participate in these question and answer sessions with her, to break the cycle, to stop "feeding" the OCD. So ERP therapy will not just help her; it will help you and the whole family learn good, therapeutic responses to these sorts of OCD episodes. Unfortunately, even if this recent behavior change is due to PANDAS, if the OCD gets a good toe-hold before you can successfully treat the PANDAS, you may have a harder time successfully eradicating the OCD behaviors after medical treatment. I speak from experience here . . . unfortunately.

 

Good luck!

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