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My son was at Rogers last year for eating disorder related to PANDAS. He was in the inpatient 24 hour ED department for minors. The program is good especially for kids who are very ill and need immediatiate refeeding. Rogers was very good about keeping him on the antibiotics he was already on. They seemed open and interested in learning more about PANDAS. Rogers was a great facility for his immediate need for refeeding they dont put up with any excuses for not eating and do what they have to to get the kids nutrtionally well enough to accept therapy. Rogers wanted my son to go to their residential program after release from their inpatient program but we were able to find a program closer to our home. He then was in Sheppard pratts ED day program for 30 days.

Does anyone have any knowledge of how accurate the PCR strep test is for our PANDAS kids? My son is having PANDAS flare but not showing any other signs of strep. Doc is sending of PCR for strep and did not run rapid. Im sure PCR works great for "normal" kids but PANDAS kids always seem to not follow the rules of test results. Should I trust the PCR results?

Thanks for the replys. I took 18 YO to ped yesterday and they are running PCR strep test. We will know the results today. Doc thinks it combination of allergies, stress and exposure to whatever the strange rash we had was. I agree with the doc but he did not provide us with any solutions other than take him back to his therapist for a while. I will be putting him back on antibiotics and ibuprofen. Hopefully this will curb this PANDAS flare. Thanks Again Melissa

18 YO son with PANDAS probably since infancy. He was hospitalized with Eating Disorder one year ago. He had been doing very well until about 6 weeks ago. Our 7YO nonpandas son had what looked like scarlet fever rash all over and myself and two of our older kids had same rash but not over whole body. We all felt fine no fever no sore throat. Took 7YO to doc his rapid was neg and culture was neg. during the same time the pandas son started saying he was starting to feel like the ED was acting up. He even said this feels so weird because I havent even thought about weight or eating since last year until now. my question is should I have 7yO titers tested to see if he actually had strep Do I bother testing 18yo who didnt have any strep symptoms and titers usually dont rise anyway. Do i test any of us for other things I would like to have proof that his current exacerbation of PANDAS ED was set off by something that one of us in the family had six weeks ago. Thanks for any thoughts on this mess. Melissa

my 7YO had strep last year from feb thru may -10 days of antibiotics, he would seem better but on thirteenth day would wake up with fever and sore throat then would start another 10 days of antibiotics - tonsils and adenoids removed in April only to test positive again two weeks after. It took 30 days of Rifampin with 10 of those days on clindamycin to finally rid him of the strep.The entire family followed the same medicines we all started it at the same time. He has not tested positive since last May. We had to have a compounding pharmacy make the rifampin into liquid.

Dont be sorry for the suggestion of bedbugs, they are possible everywhere, they always cross my mind when we travel. This rash is what I think of with Scarlet Fever except we all felt fine. It is very slightly raised, not bumpy like bites, covered the 7YOs skin almost completely, very ruff, felt like a lizard, and now he looks like one with the flaky skin on his face. I am taking him today for a strep test. I dont know if it will show up since it started 10 days ago and is now gone, but I need to make sure he is negative in hopes of getting the 18YO back to base with his PANDAS. The 18YO reacts terribly when the younger kids have strep. If it is strep at least I know what I am dealing with and can treat it. Thanks

No symptoms before the rash. The only thing I noticed before we left on the trip is that the 7YO's face looked a little puffy. This time last year he fought strep for over four months and his face was puffy off and on, but then he had typical strep symptoms(fever, sore throat etc). It could be parvo but 7YO was the only one with red face. The other big kids had rash on face but you could feel it more than see it. Theirs was more on the ears, behind the ears, neck, and back. Mine was mostly on my arms. I took pictures when the rashes were fresh so I could show the doctor if needed when we returned to the states. I may take the 7YO to pediatrician tomorrow and have him tested for strep. The 18YO (PANDAS) is now on antibiotics so I'm guessing his rapid would show negative. I read that if it is scarlet fever it continues to stay contagious during and after the rash if not treated. Do you know if that is true?

Anyone have any thoughts on this situation? -Last Friday April 26 our family flew to Aruba for vacation -Saturday I woke up with itchy rash on inner forearms on both arms(first thought it might be allergic reaction to sheets at resort). -Our seven year old wakes up with rash on face which progressed to rest of body over the next day. - Later Saturday our nineteen year old and 22 year old started having rash on face, ears neck and back. -The older kids and myself had the rash but it never got as bad as the seven year old. -The rash looked like scarlatina, it could be seen easily but some areas it could be felt more than seen, it felt like a lizard. Red, lightly raised, a little itchy, mine itched worse than the kids. -None of us felt sick no fever, no sore throat, felt normal. The little guy was a little cranky. Our 18 year old(PANDAS CHILD) had to fly into Aruba Saturday a day after the rest of the family. When he arrived I could see his tics were acting up and he said his throat hurt and he was stuffy, but no rash or fever. I started him on antibiotics(I go no where without extra antibiotics). All of our rashes have cleared the seven years face is now dry and scaling. Could this have been Scarlet Fever on all four of us with no symptoms but rash? Could it have been a viral rash? Any other thoughts on what it could have been? Thanks for any thoughts!

PANDAS son woke up this morning with fever, and body aches. If we find it is the flu are the PANDAS doctors recommending using antivirals like Tamiflu? My son has been fairly symptom free for 6 months and so far today we are not seeing any issues. He had IVIG and Plasmpheresis about a year ago.

Great post! Diffrent thoughts from doctors, researchers, parents etc. all contribute to finding an answer for our kids. We all may not agree with every opinion but taking a look at all possibilities is what will make progress. Even the nonbelievers in the medical world who have taken the time to decide why they do not believe can be a valuable(also a pain in the A'') tool. With out the naysayers the believers would not have to work as hard to prove what is the best treatment for our kids. It will take these doctors giving their all, to find answers. Until we have 100% answers it would be nice if all of the medical community would be willing to look at the things that researchers have come up with so far. Ignoring our kids problems or covering them up with SSRI's will not make them go away. Our kids need help now! The one thing that bothers me most is doctors who practice as if they do not believe because the head of their practice has decided that their practices protocol will be to not believe in PANDAS. A doctor who practices against something he believes in(because their boss tells them too) is not living up to their code of "Do no harm." Being a good doctor is an unbelievably hard job and a huge responsibility. Doctors please do not make your decisions on treating or not treating an illness because your offices protocol book says so. Make decisions based on medical knowledge. "A good doctor is a leader not a follower." Each PANDAS doctor may have a little diffrent course of treatment for our kids but thankfully they have spent much time and effort to come to their conclusions. Thank you to all of the doctors, parents etc. for your effort to help our kids. Your work will "lead" to answers

Thanks for all of the ideas, I will try them and see, anything to lessen the amount of time he spends on thinking about food. He has been checked for Lyme with Lab Corb and all bands on Western Blot were negative. Although I am not sure if I trust it. My older daughter also PANDAS had bands 18 and 23 Pos. but the one doc she saw who is suppose to be somewhat Lyme literate said because she isnt having major problems and her CD(I think thats what it is called) is 87 that we will take a wait and see approach. 87 is w/in normal range but I thought that most normal immune systems were at least 150. So back to son, he had an xray of abdomen to rule kinks, masses etc. and everything was fine. I guess a trip to Gastro is in order. I have been dealing with my kids PANDAS issues for 19 years and it seems like a new symptom is always popping up, Some days I feel like a crazy person I can only imagine how hard it is on these kids. Thanks again for the advice Melissa

My 16 YO son has since the age of about 9 been concerned about eating certain foods. He is always worried about how much fat is in a food item. He sees the word fat and his OCD sees "this will make you fat" although intellectually he completely understands nutrition, calories etc. In 2010 we were dealing with loosing weight, restricting food and water. Now we have him back to eating, weight is normal but he thinks he is fat and thinks about food all the time. He is constantly in the kitchen looking at food he takes a little piece of this a bite of that, he is driving me crazy! He will not eat what we have for dinner unless it is chicken or something else low in fat. He spends way to much time preoccupied with what he is going to eat next and worrying he is fat. Also he regurgitates his food, sometimes within minutes of eating. He is not physically making himself regurgitate but undigested food just comes back up with no stomach muscle involvement. he regurgitation began in February, as soon as he stopped restricting food and began to eat "normally". His pediatrician treated it as Gerd but this is something else. It is PANDAS and eating disorder related. I guess my main question is what doctor do I take him to. There are no doctors in our area who seem to understand PANDAS. We tried therapist for the eating disorder but they had no clue about PANDAS. He has been seeing a neurologist, again they have no knowledge of PANDAS. HELP! Thanks Melissa

My 15 YO son has the same thing with regurgitation. He throws up sometimes almost as soon as he swallows something. He has been doing this for about 5 months with no answers. Somedays it is bad (he can fill up a 20 oz cup in a short period and other days it is a small amount that he can swallow. It is anywhere from immediate to an hour after he eats. Sometimes he cant even keep water down. So far it has not affected his weight and doctors dont know what it is. As far as labs November 2010 AST 37, ALT 15 June 2007 AST34, ALT19.

Daughter has band IGg 18 and 23 pos with Lab Corp. Her CD 57 is 87. She has been diagnosed PANDAS and most of her symptoms seem like more PANDAS. Doc is some what LLMD but admits he is just learning Lyme. He feels she is OK and should just wait and see if she starts to feel bad in the future. Does anyone have any thoughts on this?

My two Pandas kids are older and have been there. One qualified easily for honors because of test scores one was not recommended. In our school district you as a parent can ask(demand) that your child be in honors if you feel they should be. I wanted mine in honors more for the classroom environment. Honors classes are typically easier learning environments. The kids in honors are usually less discipline problems which causes less distractions. My kids are ADD and needed less distractions. This also leaves the teacher more time to work individually with students as needed. I would find out if she even needs to take this test and just put her in which classes you feel is best for her. My theory was If they couldn't handle it I could always take them out. It worked out best and they continued to stay in honors through high school.

Two of my kids have been diagnosed PANDAS with typically symptoms since about two years old. They are now 16 and 20. They do have a couple of weird issues I wonder about. One was born with only one kidney. No reason and it doesn't seem to cause any problems. Both kids and myself(I also probably had PANDAS as a child) have sugar in our urine but blood glucose is fine. Doctors always freak out when they check our urine and they always insist on blood glucose test and its always normal. One of my kids that is not PANDAs always has blood in his urine. No medical reason. Lyme is also suspected in my oldest WB bands 18 and 23. Does anyone have any thoughts on the kidney issues?

One child with no pos bands and one with 18 and 23. My kids are older 16 and 20 so I am not sure if the fact that if they had lyme they could have had it for a long time could make a difference.

My sons breath had a funny smell when he was younger and PANDAS was acting up. I always felt it was yeast overgrowth in his gut causing the smell. Never knew for sure.

My 20YO daughter has not been diagnosed with Lyme but her WB results were positive 18, and 23. We have not been able to find a LLMD to look at her yet. My question is she had to take Prednisone for reactive airway flare up recently. She had a rare side effect of severe fatigue. She slept about 20 hours a day for three days until we took her back to doc and they said stop the Prednisone. It took two days after stopping meds for her to not feel so tired. Does anyone know if this reaction could have been because of lyme?

My advice would be let her have it at home. My 20 YO PANDAS daughter had a pacifier until 2.5 years no big deal right? But now I have a 20YO who sucks her thumb all the time. When we took pacifier away she began sucking her thumb and never stopped(we tried everything). It is definitely a coping mechanism for her and she says "She feels sick to her stomach if she cant suck her thumb." If I had only not taken her pacifier away. To make matters worse she holds a piece of an old rubber doll up to her nose while She sucks her thumb. The doll is no longer a doll it is just a leg, an arm or split open mid section. She prefers the leg but any part will do if the leg cant be found. DISGUSTING! Luckily she only does this around family. Otherwise she is a normal, successful, independent adult. Just an adult who sucks her thumb and hold onto rubber baby parts. So, a pacifier is no big deal You can take a pacifier away, but I cant figure out a way to take my daughters thumb away. LOL1

Oh wow! My four YO son who weighs 35 lbs has been on Melatonin since about 18 Months old. He started with 1mg and he would wake up having night mares so he now takes 1/2 Mg sublingual(Cherry from GNC) and that works great for

Both my kids have tics. 15YO has terrible handwriting and no positive lyme bands. 20YO handwriting is not affected and she has two lyme specific bands positive.

My 15 YO son lost 10 lbs in 6 weeks over the summer. He has been very particular for several years about what he eats (it has to be healthy and low in fat). When I realized how much weight he was loosing we finally got him to admit he was cutting back on calories because he was afraid of getting fat. He started at 5'5" and 116 and went down to 105. One of his OCD's is fear of fat. We now have him to a point where he is eating more (although it still has to be healthy), but it is something we watch closely. My older son (not PANDAS) is 17 6'1" and 138lbs, he is very thin but has always been thin.

I have older PANDAS kids 20 and 15. I dont Know where you live or his religious beliefs but the best thing my teens ever did was get involved with an Organization called Young Life. We are religious but not church going, but my teens found YL to be the peer community for them. It is such a positive group that have young leaders that mentor high school kids. YL is religious based (no particular denomination) but its main focus is having fun in positive ways. Yesterday was the annual Turkey Bowl football game, where all the YL boys get together and play football and the winning team gets a goofy trophy that gets passed down each year. YL tries to have organizations for each high school although they are not school based. The kids in the group try to find kids who might need a little direction and show them what YL is about. They have a web site that you could check if there is a group in your area. I have found that with five kids they want to belong somewhere and YL makes all kids feel like their family. It is truly amazing!

I have one PANDAS child no Western Blot bands pos and one PANDAS child with possible lyme. Does anyone have thoughts if any symptoms are seen more in Lyme kids, PANDAS kids or Lyme and PANDAS together. Both kids have some of the same symptoms but they also have symptoms that are different. Both have tics, one has frequent urination one dosen't etc.