dcmom

Hi Momtotaylor, We too are going through this with our 5 yr old daughter. She had major behavior and personality changes overnight. After four weeks, we found out about pandas (thanks to the internet) and she had a postitive strep culture. She has responded positively to antibiotics. She has been on a cephelosporin, amoxicillin, and now zithromax. All have seemed to work the same so far (although we are only on zithromax day 6). She has missed a lot of school (kindergarten) due to overwhelming anxiety and OCD issues. She is back to school now, and happy to be there. The mornings are the hardest. Clothing remains a huge issue for her- she is only happy in pjs. Getting dressed (and using the bathroom) brings up such anxiety, and this has not gone away with the abx. I wonder if this is just a permanent change, is this something we need to work through with therapy, or is there still brain inflammation? How have you dealt with the clothing issue? I go back and forth with coaxing her to get dressed, or just letting her go happily to school in her pjs. She is only 5, she shouldn't have to go through this anxiety.

Sandy, Please let us know where you are located, so someone can maybe recommend a knowledgeable doc for pandas, they are hard to find...

I just wanted to add an update on dd condition. We did 14 days of cefadroxil. We saw some improvement, but OCD issues still there. We saw a very helpful psychiatrist in VA. She put Julia on 10 days of therapeutic amox, followed by a daily preventative dose. She thought it could take six weeks for the symptoms to subside. We saw an immunologist in DC (no help at all- doesn't really believe in pandas). We saw an infectious doctor in DC- very nice, we spoke about strep, however all of his info (by his admission) was from the pediatrician's book published 3 yrs ago. I saw two very helpful neurologists, one in MD, one in NJ. The NJ neurologist was very informative and knowledgeable about all studies and theories. He was the first doctor to admit that even if one cultures negative, the strep can still be there- seems obvious- why do other doctors have such a hard time with that? He also discussed the theory that strep can go intracellular. He thought tonsil removal can help in some cases. He seemed to reserve IVIG and PEX for EXTREME cases- which I don't know if I am in agreement with. He has a patient who is 22 and hasn't grown out of pandas (although she is doing very well). He put her on a 10 day course of zithromax (we are on day 2). He took a blood test, we are awaiting the results. I am REALLY hoping the Zith helps. (She is functioning much better already though- just a lot of anxiety around OCD issues). I am curious to see her blood test results. I wanted to update the thread, because I have found researching everyone's stories so helpful. And if anyone needs doctor recommendations in my area, they can email me. My current struggle is that I really am thinking of trying IVIG or PEX if we have another episode. Have others been successful in having insurance cover it? It just seems like if I can prevent her from a lifelong struggle with OCD, it would be worthwhile. (And from my VERY minimal research, they seem like relatively safe procedures.) How does the risk compare with a tonsillectimy? If anyone could offer insight I would appreciate it.

amy s, That is awesome. I am sure you know how great it is to hear good news! Hope is important for all... I hope you (and others) will continue to post successes.

Hi. I am totally new to this, but, we saw a psychiatrist who is knowledgeable in pandas (with our dd), and she indicated that most medical tests (titers, mri, etc) have been unreliable for pandas patients. I hope you have good news soon...

Michele, I am so sorry for what you are going through. My daughter is only 5, so I think, all in all, this is a little easier to deal with for me than if she was older. Her teacher has been great/understanding as well. Getting out the door in the morning has been a major issue for us. During her worst OCD time of this episode, I don't think anything would have helped. The hard thing is that it is really a struggle within themselves. Now, however on the abx her issues are winding down a bit. We have found a child psychologist that deals in anxiety issues to be very helpful to us. I was doing the sticker thing, and it did not work for the morning. Now, at the psychologist's suggestion, we have been trying immediate gratification in the morning. If she can get up, get dressed, take her med, and go to the bathroom (all her major anxiety points), then she picks a wrapped gift from a treasure chest on the way out the door. At her worst, this would not have helped (may have made everything worse-upped the anxiety), but now since she is able with some difficutly to do this stuff- it is a good motivator. While I am totally for hitting this pandas thing with abx (we are considering IVIG), it seems (in my very short experience) that maybe some cognitive behavoiral therapy can help for the times when their issues at are at a semi manageable level. Have you seen a psychologist or psychiatrist? They should also be able to help you with the school by speaking to the teacher and or principal. Good luck!

My daughter has had her first episode of pandas recently. Thank you to everyone for your valuable information. This episode, and the research that I have done have me in a total panic (I am sure you can all relate). We are seriously considering IVIG- maybe, assuming we can get this under control, if she has another episode. Part of me wants to not let it go that far, and do it now (she is 5). Has anyone been able to successfully control pandas long term with antibiotics? Have those who have has IVIG, had success or disappointment? Has anyone had luck getting insurance to cover it, and if so, how? Thank you for your insight. I wish somewhere we could compile all of our info in some type of format.....

They had plasma exchange at the NIH, and ended up having pex at Georgetown U hospital with their other child about 8 yrs later. They felt it cured the first, and although it is soon, up to this point the second seems to be cured. On another topic: when this family had the PEX it was done through a central line (this is where most of the risk seems to be), while researching, I saw PEX can be done through central line or a limb (central line being faster)- does anyone know if it has been done through a limb anywhere? (Seems like it would be an easier decision....)

Two things have come to my attention: I have run across 3 to 4 families that have had two children with PANDAS in my short time researching. Since they think there is a genetic component I guess it is not that impossible that our other children could be at risk. The other is, I spoke to a family from the original NIH study that had all of their children on daily prventative abx (to keep strep out of the house) until their pandas child went through puberty. Do many of you put siblings on antibiotics? My pandas dd has an 8 yr old sister (who happened to have strep last week- which I can only surmise caused pandas daughter's symptoms to increase a bit). I am of course concerned for both of them....

I don't have her phone number right now, but she is in Herndon, Virginia. She saw us pretty quickly- but, I just took the first time she suggested.

Hi Colleen, My daughter took 14 days of Cefadroxil prescribed for the strep (not a pandas diagnosis) by my pediatrician (she prescribed 10 days, I had extra in the bottle, so I continued). She has just switched to a 10 day course of therapeutic amoxicillan, after that I have a prescription for prophylactic amoxicillan indefinately. We saw a definate improvement in her mood/ symptoms. Still some ocd like stuff, and moodiness hanging on. Unfortunately her sister has strep now. She is on amoxicillan for 10 days. I will have them both cultured again when sister is off the abx for 2 weeks (unless any symptoms increase for either of them). The MD we saw for PANDAS has had good experience with amoxicillan for pandas symptoms. I am wondering if dd should see an ENT to check her tonsils. Her sister's came out in first grade, and she wasn't sick at all for almost 2 years. They were infected when they came out (after a strep infection). I guess it seems most think a T&A isn't helpful. I am also wondering if there are any other ways of checking that the strep is eradicated (can a culture sometimes be negative, and there be strep somewhere else in the body?)- should we see an infectious disease doctor? Have others found immunologists to be helpful (considering that is where the underlying problem is)? My pandas daughter is a very picky eater. She is on the abx, and I am giving her probiotics (does it matter which kind)? What other simple things do others recommend (remember she is very picky) to boost immune system or help with daily abx intake? Vitamin C?

HI. I live in Washington, DC, and my daughter recently had her first episode of PANDAS. Dr. Swedo recommended a psychiatrist (who worked with her on some of the original studies): Dr. Susan Perlmutter in Herndon, VA (that is NoVa). I think some on this forum may have seen her as well. She was very nice, and informative. She seems to be very knowledgeable, and yet willing to admit there is just not enough known about this disorder. She put my daughter on daily abx, and is going to consult with dd's psychologist and pediatrician. It is comforting to have an MD, at least on your side, and able to help work with the other doctors. Someone on this forum also recommended a pediatric neurologist in Maryland Dr. Beth Latimer. I had originally called her office, and they said she does work with PANDAS patients. I am not sure what a neurologist will do, though. We are 99% sure our dd has PANDAS, she had a pretty textbook episode- therefore, I am not sure what a neurologist can do for her. I hate to put her through a lot of testing, just to prove what we know. But if you are not sure it is PANDAS, then a neuroligist who does treat pandas could be helpful in confirming the diagnosis and/or eliminating other things. My dd is still on abx from her first strep/pandas episode 2 months ago. I, too am afraid of the possibility that she has not cleared the strep. I am wondering if an infectious disease doctor would be helpful? Please let me know how the steroid burst goes. I was so overwhelmed with info I didn't ask Dr Perlmutter if she is an advocate of that. Do you know if Dr Swedo is? I am thinking if/when my daughter has another episode, I would like to try it. What type of doctor did you find to do it? Does this mean you are considering IVIG? Please keep us updated, as the information everyone shares here is so helpful! Stay strong, your daughter is lucky to have such a pro active mom!

Yes! We saw a child psychiatrist today and she confirmed that my dd seemed to have a clear cut case of PANDAS. I am of course very stressed, but thankful to have a doctor to help us. She prescribed another 10 days of antibiotic, and then a daily lower dose of antibiotic indefinately after that. I guess we just wait (on pins and needles) now to see what happens next. I will follow up with a throat culture in a week for PANDAS daughter. My husband and I will get cultured this week. Do you think I should do a follow up culture on my other daughter (she has strep now), or only if either has symptoms...

Ok- well her sister was just diagnosed with strep today. I guess this could be the reason for Julia's backslide in progress? I guess we (parents) should get tested also?

Hi everyone! This forum is so helpful, and you all are such wonderful parents... My daughter has had her first (we think) pandas episode (I explained on a previous post). We caught the strep about 4 weeks in. She has been on a cephelosporin for 13 days. After the first 3 days we saw a huge improvement, almost back completely to herself (we were also doing advil at that time). Then at about day 5, there was a regression. No where near as bad as original, but definately more anxiety and anger, and OCD stuff a little worse. She also looks pale and tired to me (we had discontinued the advil). We restarted the advil yestarday, to see if it was a coincidence. Any thoughts? Did advil noticeably help your kids? Could she be fighting off another virus even on the abx(there is a ton going around at school, and her older sister seems to be coming down with something)? Could the abx not be completely knocking out the strep? How soon after completing abx would you advise a strep test? If that is negative, should I then do another one a few weeks later? Thank you all for your help! We are seeing Dr. Perlmutter on Wed. I am hoping for her opinion on whether this is PANDAS, that may help with our pediatrician. I am planning on using the rest of the bottle of abx (probably will give her a total of 3 weeks), and re testing for strep about a week later. Then I guess I will keep a close eye on her behavoirs. Also, and advice for siblings? This has been stressful for her sister (age 8). Julia's temper tantrums have been upsetting to her, and Julia has also been uncharacteristically mean at times.

Sorry about the last post- I am new here. Well we are in our first episode of PANDAS (I think), and I will agree that IF I get my daughter to school (Kindergarten) she is able to hold it together. But to illustrate how stressful it must be: she has long wiping issues after urination as part of her symptoms- she has had 3 accidents at school because she is now completely avoiding using the bathroom. She has very difficult mornings, after school there is usually a short period of issues, and then night time again. I definately read it in one of the studies, that the behavoirs seemed to peak in the morning as the children were trying to leave the house. For us that is totally true, whether it is school, the store, or ice skating... What stress on these little ones...

Hi everyone! Very excited to find this forum. I diagnosed my daughter with PANDAS over a week ago, and need some practical advice. She is a wonderful, sweet, 5 yr old. She had two "classic" cases of strep in 2008, no behavoiral symptoms that I recall. She started a few weeks ago, with frequent urination, LONG and extensive wiping rituals, worry, and out of character temper tantrums around all urination activities. The doctor diagnosed her with "vaginitis" after a UTI test was negative. Two days later, for one day, she had a low fever. By this time, it was next to impossible to get her dressed to leave the house. My little munchkin was unraveling in front of my eyes. Panties don't fit, pants not comfortable, tags bother her, hours in the bathroom, major temper tantrums. The next week, I managed to get her to school, late, a few times. Finally a parent in the class sent out an FYI that her daughter had just been diagnosed with strep with no symptoms. Could it be strep? I was desperate. I googled strep and behavoir issues and found PANDAS. I read as much as I could. It was her. Panicked (a portion of her brain is swollen?), I took her to the doctor with a printout from NIH on PANDAS. The quick strep came back negative. My heart sank. The doctor sent us home with a prescription for bacterial vaginitis. I knew that was not it. My daughter's behavoir was way too extreme. After the weekend (a heart wrenching week end), the nurse called, the throat culture from the lab was positive. Vindication, a prescription for Cefadroxil, but now what? Although I don't blame her, I really don't feel like dealing with that dr. again. My daughter has been on the medication for 7 days. We saw some improvement in her emotional issues and eating after 5 days. There is no more urination frequency. However, it is still hard/impossible to get her to school. She still will not wear panties- and hates putting on anything other than PJs. I have an appt for Thursday with a psychologist who deals with children's anxiety disorders. I have an appt next week with Dr Perlmutter, who worked with Dr Swedo, and was recommended to me by Dr Swedo. Here are some questions, but I am open to any advice: 1. Hope? Is there a possibility that she won't contract strep again, and therefore issues will resolve and that will be it? How frequently does your child get strep? Why does it seem (from this forum) that these kids get strep all of the time? 2. What do you do about school? Do you try to force them to go? Do you homeschool? How long do they typically miss for a relapse? (she has missed a total of 10 days in the last three weeks) 3. Should I give ibuprofin? The brain swells- this puts me in a total tailspin. Is there evidence or thoughts of lasting damage from this? 4. When the behavoir subsides, is it quick? Will she hang on to some of these issues, even when the biological factor is gone, because she has gotten into a rut, and is too little to understand what caused it. She does NOT like to talk about any of it. Do you feel a psychologist is helpful, or a waste? 5. What type of doctor will handle this long term, in the best way for us. Pediatrician, neurologist, psychiatrist? Can anyone recommend a doctor in the Washington, DC area? Thank you so much for any insight you can give. This has been a very difficult month for me (with worrying about her, and using all of my patience and strength), but my heart breaks so much for these children. To go from loving, happy and sweet to overnight consumed with anguish, worry, fear, anger must be so confusing to any age, especially the little ones. Best wishes to everyone in their search to find a solution for their child. Oh, and one last thing, I would love to put together a simple eye catchy postcard on PANDAS to send to pediatricians. I believe this is probably a lot more common than even the scientists think, and it is fairly simple to screen for. If my doctor knew what to look for (the urination issues are classic- and in strep season...) we could have caught it a few weeks ahead of time. Imagine those who don't make the connection to strep for much longer, maybe some never. Anyway has anyone done this? Any thoughts ? Ya know, a glossy postcard in a bright color with a cute panda on it, listing the classic signs and stressing a strep test just in case.....