memom

Great news. I wish both you and your son continued healing. Keep us updated with progress. memom Ellie

Hi Lynn, We are headed for our second visit with Dr. B. April 1. Per his words, he does not start with the big guns until he has tried a few other things first (full laboratory workup, antibiotics, and steroid burst). Have a good visit. Ellie memom

Thanks for this. I continue to tell patients that mercury is a know neurotoxin, can't be good to have it injected into a growing baby with a growing brain. memom

He told us that our son had a 20% chance of having PANDAS, the main reason being that my son could “function” at school. He said that it would be virtually impossible for him to turn his behavior "on and off.” Very interesting. My 17yodd was diagnosed at 16yo after she experienced an explosion of symptoms including severe OCD after another strep infection, but in retrospect had been showing milder symptoms of quirky behavior for many years (at least 4 maybe more). It was in fact that she went from a good student to failing every class that we all became aware how sick she had become. But no sudden onset severe symptoms as the original start of this back when she was in elementary school, functional but quirky. It wasn't till a series of chronic strep infections that pushed her over the edge to not functional. We watched her symptoms get even worse about a year later when she got a bad strep infection again. I knew what to watch for and it was remarkable. Explosion again. The problem is, not returning to functional baseline since 15yo. So we too would not have fit the criteria. But somehow surgery, antibiotics and two month long steroid bursts have gotten her to 75%. Definate Pandas. Any stress or illness now triggers worsening symptoms. Hoping for IVIG soon. No college next year. She has lots of repair work to do both medical and educational. Ellie

Group B strep is one of the streps that is often resistant to Clindamycin/erythromycin. These are commonly used when someone is allergic to penicillin. I see it all the time in the work I do. Ellie

Don't overthink it. Narritive of what you remember with reference to onset symptoms, what those symptoms are, labs, treatments with results from treatments, how it is impacting childs life, etc. He is looking for those things that would point to Pandas diagnosis. He will ask questions if he isn't getting what he needs. Good luck. Let us know how it goes. Ellie memom

[DD17 Pandas sleeps more when her symptoms are worse. She remarked how tired she gets when her OCD is bad. She is in bed by 7pm, asleep soon after and I have to wake her at 6:30 in the morning. When her OCD was better on steroids, her sleep needs much less. My 20yo with adolescent onset also had fatigue as a big symptom. Energy much better with 2 months antibiotics (even exercising again). My take is that the emotional issues take a lot out of these kids. All the repeating is exausting. Ellie

This really fries my you know what. I can understand hesitating with paying for PEX at $40,000 a pop, but antibiotics? They won't hesistate to pay for psych meds which can be very expensive and don't treat the underlying problem.... Don't get me started. I would consider getting antibiotics online with a Canadian pharmacy if I needed to. memom

If you do not mind me asking, what helped your daughter get better? Dr. K mentioed dealing w/ older kids w/ PANDAS as with children that have had it for a long time is a little more difficult. I know we have a long road ahead of us but since your daughter was on the older age spectrum of PANDAS like my daughter, I am just curious as to what finally helped her. First of all, we are not yet at 100% but the only path to any improvement started in August (17yo) with tonsils pulled, no antibiotics. Saw definate improvement within 10 days. October started Augmentin, but too low dose at 500 twice daily and a month of steroids. Saw another improvement to about 75% but back sliding as soon as steroids stopped. Increased Augmentin to 875 twice daily in mid November with no improvement for the next month and a half. January changed antibiotics to Zithromycin 500 mg daily, got brother treated with full strength antibiotics for very elevated strep titers, and repeated month of steroids. Day one of steroids this time saw improvement to 95% which lasted the entire month at 85%, (as the month goes on they step down each week with the steroid dose). Unfortunately, here we are, two weeks or so after stopping the steroids and dd17 last night told me she needs to be put back on the steroids because she is struggling again and is exausted. For us the steroids have been wonderful to get her baseline improved. We will be discussing IVIG at our next appointment with Dr. B. We have tried everything to date and believe IVIG is our only last step. I will say the second steroid month gave us such better improvement than the first I think due to her brother getting treatment. It was pretty amazing to see it work so fast. Good luck. memom

Definate evidence of prior infection. Though if you read above thread about IGM may not elevated for reinfection, just IGG so this could be recent reinfection vs infection fir the first time. The IGM elevates with first time infection and go away over a period of several months. memom

Hi Debbie, I am exausted from reading your post. There is little doubt in my mind all the behaviors are connected and continued Pandas. I agree with SFmom. Dr. T., Dr. K, Dr. Latimer (Bethesda) are good choices. Getting on antibiotics seem to be a no brainer until this all gets teased out. As others have said, when treated appropriately with good follow up, these kids get better. You have had a long road that has had many turns, each one promising symptom relief and yet here you are. One of the symptoms that spoke with me was the mental changes. Many on this board found that when their kids came out of an exacerbation, the first thing to return was the clarity of their eyes and that distant look went away. When their brain is swollen, you get changes in their personality, anxiety, rage, difficulty processing cognitive thinking. My daughter was a little older when she had her first extreme pandas episode (but like your daughter had probably had for many years before but manageable symptoms). When she started getting better, the first thing I saw was the clarity in her eyes came back and that lost look was gone. My first chance for hope. Keep the faith. Get the best treatment you can from people who know Pandas. Get everybody in the house checked for strep with cultures and blood work if needed. Good luck, memom

Zoloft is not making my daughters symptoms worse but not really helping. Hope to start weening soon. memom

I'm glad you asked this question. I was about to do the same. My 17yodaughter has never been tested for mycoplasma but her symptoms mirror momaine. Numerous strep infections and elevated titers and positive cultures. No rage. In fact, that would be against her OCD which pushes her to not be angry with anyone (long story). She also could do nothing but sit in her chair and watch tv during her worst time due to her OCD. On the other hand, my son who is 20, had sudden onset depression/rage/anxiety/fatigue 4 years ago. No one ever considered it could be anything but mental health issues. Long story short, after 4 years of failed treatments, I became suspicious it was Pandas while watching him try to find his way through a simple intro college course in November. His mental processing was identical to his sister who we discovered Pandas about a year earlier (though in retrospect has milder symptoms for years with severe exacerbation after repeated strep infections). He had definate encephalitis type disorganization with his higher mental processing. Strep titers very elevated, elevated Cam k., and now have had the Mycoplasma drawn (though it was drawn after a full 6 weeks on Zithromax so may have been higher) and was IGG elevated twice normal. Don't know what is responsible for his symptoms, but the rage is like nothing I had ever seen and very much not who he is. We have seen definate improvement with Augmentin though were starting to see improvement at the end of the 6 weeks of Zith. memom

Aarg, I have to mirror Alex's remarks. But first, get your ducks in a row and be sure a thorough workup is done with a Pandas specialist (the two mentioned are great). Make sure you and the physicians are convinced it is Pandas and that it is Strep related vs Mycoplasma and strep. Given her symptoms, it is reasonable to consider she may be dealing with more than one culprit. Even with IVIG as a goal, a month of the correct antibiotics and maybe even a steroid burst prior to doing IVIG may help it to work. Getting two experts opinions even if you have to pay out of pocket for those consults are more than worth their weight in gold. You will pay more in copays for therapy and medications/phychiatrist appointments and with no hope for recovery. I want to briefly share my regrets with my now 17yo daughter. I followed the path you are being led down with Zoloft (and yes, the highest dose we got to was 250mg daily!!!! with no cure), therapy for a year and here I am, still without cure. The only thing that has helped was to get her tonsils pulled in August, daily antibiotics since October (6 weeks of Augmentin 500 twice daily followed by another 6 weeks of 875 twice daily, and now Zithromax 500mg daily for the past 8 weeks), two month long steroid trials one in October and the second ending about 2 weeks ago. She is now at about 75-80% better. Now, after loosing almost 2 years of her life, we are finally hoping to hone in on IVIG, and you can bet if we do it it will be the high dose, not monthly low dose. I am so tired of defining my life as a parent struggling with 2 of my 3 kids with years of mental health and mental processing struggles that I would sell my soul for cure. I have tried gluten free, vitamins, methylation, you name it. No help. I too am not normally a drug pusher, but have been dealing with this for so many years, it is miserable. My poor son has missed two years of what should have been college years being disabled with mental processing and rage/anxiety and depression. All due to Strep and now we think possibly Mycoplasma. For the first time in 4 years, I am getting my son back after simply 6 weeks of antibiotics and 5 day steriod burst when 5 SSRI's, two Psychiatrists, two Psychologists and 4 years of his life lost. If i knew what I know now, I would have done things very differently. With these older kids, time is not on your side to wait it out. Good luck, memom

Daughter has done two month long rounds. She weighs about 110 lbs. 50/40/30/20/10. Next round 40/30/20/10. Son weighs about 140lbs. 60 daily for 5 days. Daughter on round one took one week before improvement started. On round two, day one of treatment. She was not quite as bad when we started this second round as she was for first round but definate improvement from first day of starting and had a better response than with her first round. I think the difference also was how it was prescribed. Dr. L. split each day's dose so not all at once. The second month prescribed by Dr. B. and took entire daily dose all at once. Also, brother not yet recognized as a strep source during her first round. About a month after her first treatment (was in October), brother tested for ASO/Anti dnase and found to have titers more than three times normal with elevated Cam K. levels. So, maybe better response second dose because brother had been on a month of Zith already when she restarted steriods in January. Son not sure. Started a new antibiotic at the same time but seems like by about day 7 noticed jump up in improvement. I hope this helps. Ellie

No use of steroids. No pretermers. No meds in labor. Ellie

Hi Jyl, I too am dealing with two teenagers/young adults with this. My dd17 has been on steroids twice, a month each time. I can tell you will certainty that 10 day dose will not result in weight gain. My daughter on her first month round did gain weight, but as soon as she went off, it came right off (all apetite related). It did not seem to repeat with this second month's dose. I agree this age is tough. That's all I'll say. My 20yo son is a bit easier. He is motivated to get better as it has kept him from his future with further education. While all his friends are in their second year of college, he has failed two attempts due to the brain changes with focus, anxiety, and mental processing among other symptoms. By the way. We had great success on the steroids. Round two was even better than the first round. Less OCD returning after this second round (but has been more than when on the steroids where she got to 90% the second time). I will tell you that I think a 10 day dose will just let you know if IVIG may be helpful. I would be surprised if you see long term benefit, though anything is possible with this disease. Good luck, Ellie

Tired mom, I just read your note on the exorcist post about the recent outburst being triggered by mycoplasma infection. Pandas relapse can be triggered by this bug. Others on this forum have had this. Augmentin will not work against Mycoplasma I don't believe but Zithromycin will. Dr. T. has some special interest in Mycoplasma as a trigger. Consider having a consult with him. Ellie

Here is a link to the discussion about the test and how to contact Dr Cunningham to get a kit for the test. http://www.latitudes.org/forums/index.php?...unningham+tests Ellie

Dear Tired Mom, My heart goes out to you during this frustrating journey. Many of us on this board have walked in your shoes, hit dead ends, had false starts and dashed hopes. I am here to give you hope and resolve not to stop until you turn over every stone in the way between you and your daughters recovery. Listen to your gut. Trust your instincts. Trust the patterns of behaviors that don't fit with a diagnosis of anxiety only. To answer your question, yes, there are families on this board who are just now getting treatment for their adoloscent or adult children. My daughter 17yo definate pandas with milder symptoms since early middle school (not diagnosed just wondered if what we were seeing might be outgrown with time), followed by extreme worsening after series of strep infections resulting in incapacitating OCD, inability to read or write, barely able to get through with 2 credits in her Junior year of high school. Pandas suggested at this time but given information that the best route of treatment was mental health with ssri's and CBT (eversion/response/therapy). We wasted about a year getting nowhere, when she had another strep infection at the end of her Junior year and I watched as her symptoms became even worse. At that time, I changed tacts, read every post on this board from the beginning, took notes, and mustered the courage to follow my instincts and find someone who has treated hundreds of these kids. I initially did a phone consult with only one lab test in hand (strep titers) that had been drawn almost a year earlier, and our story. The physician was more interested in our story than her ASO or Anti D Nase B, but did put us on a path of discovery that helped us to become absolutely sure about the diagnosis. Please consider doing the Cunningham test (yes, out of pocket $400.00), but really puts validity to your suspicioun of Pandas (when clearly abnormal) and is helpful for physicians in getting clarity about diagnosis. When you are able to with confidence say Pandas, there are few treatment options that really help. Again, spend the afternoon, read every post and reply's on this forum. Rage and anxiety absolutely are seen with some of these kids with Pandas as are things like disorganized mental processing, ADD, depression, dilated pupils, OCD, tics, choriaform movements, mental fogginess, black circles around eyes, sleep disturbances, fatigue..... I also have a 20yo son that has what looks like adolescent onset starting 16yo. Primary symptoms anxiety, stomach pain, rage, mental fogginess, fatigue, depression (all sudden onset 4 years ago not responding to 5 different ssri's, two psychiatrists, two psychologists) now being treated by Dr. K. in Chicago with improvement on antibiotics (two months now) and a steroid burst. He has improved in all areas except the mental processing (better but not good yet), and anxiety (also better, not good enough yet). No real hx strep (though sister with Pandas and many strep infections) but significantly elevated titers and elevated Cam Kinase (Cunningham test). Keep the faith. Find someone who will listen. Please consider Cunningham tests (takes weeks to get results, can do without Dr. order) and most of all, listen to your gut. I have seen improvement with both of my kids. Dr. T., Dr. L., Dr. K. all good choices. They get Pandas and they get that there is no one perfect presentation. These guys are still in the process of defining this disorder. PM me if you need more information. At the very least, ask your Pediatrician or FP md to start her on a month trial of antibiotics, (Augmentin XR twice daily or Augmentin 875 twice daily, or Zithromax 500mg daily) while you are finding another physician for a second opinion. Good luck, keep the faith, Ellie

I wish I knew. It is the hardest thing I deal with every day. Ellie

Lynn, Boy, sounds very similar. I will bet you will see elevated Cam Kinase, and strep titers. You are right. It becomes very difficult at the ages my kids are to get them on board for treatment. Most of the time they are tired of false promises and dead ends you have tried before. When they are so far under emotionally, it is hard for them to imagine feeling better. That's why I have felt that we are at the very end for both of my kids to try and get treatment. I am willing to use college funds if needed to get any treatment that may work (because they will both be unable to use them anyway unless things change). One of the most difficult things with these older kids, is to piece together when the earliest symptoms really began. With my daughter her big flare began when she was 15 but she had milder symptoms of OCD starting back at least several years before and flared to severe following a series of strep infections. According to Dr. K., pediatric onset and adolescent onset are actually different processes. Pediatric onset is autoimmune. Usually get flares with any infection. Adolescent onset may be strep in the gut causing inflammation resulting in elevation of a hormone called cholecystokinen (sp) which results in anxiety and all that goes with it. Treatment may be easier in this population. We will see. For now, we are seeing improvement with both, but have a way to go before fully independent and functional. My thoughts are with you. It is bad enough to have one child struggling and to navigate the path to healing, but then the overwhelming burden and guilt when you realize that while you have been focusing on one, another child in the family who has been suffering for years with vague but devistating symptoms has a varient of the same thing and now to navigate a healing path when all else have failed is hard. Keep me posted on your progress with your kids. If it is easier, PM me. Ellie

This sounds like fun but I'm out. Have to work the long weekend. Ellie

I wanted to give an update on my ds20, where we've been and where we are now. Since it has been several months since I posted wondering if the struggles we've had over the past 4 years with my son could be Pandas varient, I will do a brief (ha, if there is such a thing) update on history. Sister 17yo definite Pandas probable onset late elementary school/ early middle school with severe OCD and some choreaform movements. Effective Pandas treatment began this August and is responding to T&A, steroids twice, full strength antibiotics and hoping for IVIG sometime before summer to get her back to 100%. Now pre IVIG at 70% tapering off second round of steroids. DS20 sudden onset symptoms at 16yo end sophmore year high school. Had been good athlete, great student, self starter, motivated young person. Had hopes and aspirations of further education. Taking honors classes pulling mostly A's. Sudden onset depression/ anxiety, fatigue, mental fogginess, difficulty processing, rage and anger. No life trauma's to consider for triggers. Grades started falling off, athletics stopped. Weight loss, stomach pain. Sister at the same time ramping up with OCD, recurrent strep infections. Approached it with mental health arm of healthcare system (had never even heard of Pandas at this point and for the next 3 years). Psychiatrist diagnosed anxiety and depression. Began meds. No big help. Still felt anxiety, mental processing difficulty, depression and stomach issues. Stopped meds after about a year, and tried to muscle his way through his senior year. Was able to apply for colleges and was accepted on acedemic scholorship to a good 4 year college. Around graduation in June, sister got another strep infection and exploded with her own symptoms over the summer. DS20 left for college in August off meds and with some anxiety and worry he would be unable to handle the work. By October in full crisis at school 6 hours away. Unable to get to classes, further weight loss (120 lbs as a male 5' 6") due to anorexia from stomach pain, tremendous fatigue, severe depression, panic attacks, total mental fogginess and inability to write a paper or understand the coursework and dilated pupils. Started counselling and meds in hopes to keep him in school to complete the first semester (Pandas still unknown to us). Pulled him out and home about 2/3rds through the semester on medical leave. Restarted mental health care with a different Psychiatrist and psychologist with regular visits and living at home. Took meds until weaned himself again this summer as he felt they were not really helping. Tried an introduction to Botony class at a local college in September and completely was unable to process his thinking to allow for learning despite tutoring trial. It reminded me of what his sister's mental processing was like during her worst with Pandas. With a shot in the dark, I started piecing the puzzle together and wondered if he also was struggling from a form of encephalitis and decided to get his Cunningham test done and strep titers. Strep titers all elevated and elevated Cam Kinase at 158. Anti neuronal antibody titers all high end normal but normal. Begged a local doc to start him on Zith for 60 days while I did more research. Found Dr. K.'s information on adolescent onset and it fit pretty well. Two weeks ago had a phone consult with Dr. K. for both kids but mostly ds20. He agreed with my thoughts and changed his meds to Augmentin 875 twice daily and 5 day steriod burst (Augmentin for only 4 weeks then stop). What we have seen for response has been nothing short of amazing. After 4 years of going nowhere with mental health approach, within 14 days of Augmentin and 5 days of steroids, we have eye clarity and sparkle, increased energy and drive, motivation, decreased rage, significantly improved communication, laughter and a skip in his step. We are seeing his personality return and are almost giddy. Still present is the almost ADD difficulty in prioritizing and sequencing actions during a several step project and anxiety. The fact that we are seeing any movement in the right direction with this treatment makes me hopeful for him getting his life back (he so much wants to go to college and learn, and be able to live on his own like any other 20yo). A side benefit has been that his sister seems to be responding better to this second dose of steroids since her brother in on antibiotics. I hope that this may help someone else out there think about the Pandas varient. I know most of you have young children, but look at what we have been through when it was not diagnosed early. It does not go away on its own, and significantly interferes with normal learning and life as a young adult. Thank God for Dr. K. and describing and helping us with unlocking what seems to be the key to our son's lost 4 years. I will keep you updated. Ellie