thereishope

For those overseas, do you have a doctor that is on board with you? Perhaps if they contact Dr Cunningham? part of the problem is probably shipping blood overseas back to her. For those overseas considering doing the test...what is your purpose for the test? Are you in doubt of PANDAS or is there a lot of gray area that makes you doubt a PANDAS diagosis? If you have a clean cut case of PANDAS and a doctor agreeing your child is PANDAS and willing to help, I think it's okay for overseas kids to pass on it. jewels, who are you seeing in the UK? I believe there is a hospital out there seeing PANDAS kids.

I believe they can do a test on the stool for strep in the gut. They can also swab the nose. Have them check to make sure there are no signs of a sinus infection since strep can be the cause of that and the nose swab may not detect it. Sometimes kids have gone through MRI's to rule out a deep, hidden sinus infection.

Unfortunately, a lot of parents will just call and say "Tommy is sick" without full reason. Or they will send the kid sick anyway because they need to go to work. You can discuss with the daycare about sending notes home with the parent requesting they notify the school with known cases of strep. If they refuse, ask them if they send notifications home about peanut allergies. Did they request parents notify them about known cases of H1N1? Like previously said, a lot for PANDAS kids do not get symptoms of strep (no sore throat or fever). Also, there is a chance there is a carrier in his room. Can he be switched to another room? I want to quickly ask anout the negative strep tests. Were they done as follow ups after a +? If so, how soon after finishing abs. Also, were they rapids AND cultures?

Have you tried Ibuprofen to see if eases any of his PANDAS symptoms? I hope you guys have fun on the train! If by any chance he begins to look overwhelmed while you're there ( a lot of people and big, open places with tons of sensory overload can do that), just bring him to a quiet spot or in a bathroom stall and softly talk to him or try breathing techniques.

Many have found that there is a calm before the strom with some illnesses and fevers. When my son had H1N1, I thought we were home free with PANDAS symptoms since they weren't present during his 105 fever. Then 4 days after the fever broke, I saw some PANDAS blips. Granted, what you experienced is NOT a blip, but just relaying how sometimes the behvaiors happen post fever. When did you switch to the Azith? Is it believed that the fever is a result of the Mycro P (which is a common symptom for Mycro P, but not all get). Perhaps she has two insults on the immune sustem right now. The mycro P and something else. When a PANDAS child is sick with more than one thing at a time, it can really send them into overload.

If amox works for him, then maybe that's his antibiotic and stick with that. If you feel more comfortable with something stronger, Augmentin is amox with an added ingredient.

Welcome. Has your son ever had a negative strep test? Has the doctor discussed him possibly being a carrier? Strep can live pretty long on surfaces. Like you said, change tooth brushes after being on abs for 24 hours, clean the bathrooms and other rooms, with a bleach solution if you can, change bedding, wash stuffed animals he sleeps with, etc. As for the daycare, I admit, I worry. I wonder if my son got reinfected over and over at his preschool. Have a serious talk with them. Make sure he doesn't share cups with anyone, ask how often they sterilize the toys, make sure they inform you if there are any cases of strep in his room. Here are some good threads you can read regarding PANDAS.... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Something you could pass onto the daycare if you wish to help them understand http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

If I remember correctly, the OCD was the last thing to go for my son. The uncontrollable, physical rages and meltdowns were thankfully one of the first things to calm down. Glad he had a good day!

I am hoping if my son stays healthy things will remain calm. Even with his sinus infection that lasted almost 2 months, I didn't see PANDAS symptoms surface. That pleasantly surprised me. That was about 10 months after his last strep triggered exacerbation. One or two questionable things popped up but the kind of behavior when you can't determine if it's his age (6) or the disorder.

I'm glad she's doing better! I was in on the conversation about the crock pot idea, but didn't come up with it. I forgot about that! I may have to do that during the day. I think my boys need a humidier in their room but I'm nervous. I was reading up on them and I just don't know which one is the safest. Each had pros and cons. I think I will throw out my old one with the replaceable filter and get one that can go in the dishwasher. I hate worrying that every little decision I make can somehow affect him. Now I'm not even convinced he has allergies to dust mites. I stopped giving him the flonase and he seems okay. Unless I'm just keeping things clean enough that the dust mites are under control? My husband is allergic to dust mites and he's okay. Come to think of it, I need to change the filter on the furnace tomorrow.

I'm so glad that your son is doing well. Would you say the eating problems were anorexic, contamination fears, choking, etc? My son had eating issues as well. He never really voiced why he had them. I think it was a muti-faceted problem. Thank you for the update. I wish you and your family continued health and happiness!

I don't think I've heard of a PANDAS child reacting that bad to Zithromax. Has he been tested for Lyme? Did his behavior improve while on the Amoxicilli? How long was he on it for and how close to his baseline did he get while on it? You could switch to Augmentin.

I don't know if this even has a chance to have anything to do with it, but I'm gonna throw it out there. I know you had carpets cleaned. Maybe some bacteria got thrown in the air and that made her sick?

My son just turned 6 when he had H1N1. It was 7 months past his last strep triggered exacerbation. His PANDAS didn't vamp up as bad as it had months earlier with colds and allergies, but 4 days after his 105 fever (w/ fever reducer in him), I did see some PANDAS surface. It wasn't real bad but both my husband and I agreed it was PANDAS, no doubt. Luckily, it was very short lived. Maybe I should add that the H1N1 symptoms, like the bad cough, didn't hit my 6 year old as bad as my 8 year old.

Does she have a fever? Is she usually symptomatic with strep? Is this the daughter with the bad allergies?

This was a poll about what everyone's kids react to. Strep, strep and other infections, etc. http://www.latitudes.org/forums/index.php?...ic=6929&hl=

That one made me smile!

I was wondering the same, EAMom about other triggers. For those who believe their children react to strep only, follow up questions are needed. Has your child had a virus since the strep triggered exacerbation? How many strep triggered exacerbations have occurred? I also wonder if they realize their child is having a reaction to other triggers. For my son they are much more mild than the strep triggered ones, but there was a change in him. I'd have to review my journal, but I don't think my son had viral triggered setbacks until after his third strep triggered excaerbation. But, then, I also look at my son and he's starting to NOT really react to viral triggers anymore. Or they are really easing up. But I know darn well that if strep comes back all heck will break loose all over again.

Did you see colleen's response about dosing.....

I htink I'm starting to get a little obsessed with the whole chemical thing in food. If I slip and accidentally forget to read a label, birng home then realize food dye or hfcs is in it, I'd rather throw it out then give it to the kids. Or I give it to my husband:) I bought a loaf of Healthy Life bread w/o reading the label. I ALWAYS read bread labels. Of course the one time I don't, there HFCS in it! I try to buy Aunt Millie's or Arnold's. One of my other surprises was food dye in dry pancake mix! Why?

Allergies are a PANDAS trigger for my son. However, I have not had allergy testing done on him so I don't know exactly what he is allergic to. So far I have noticed cause and effect. Spring seasonal allergies and dust mites.The ped said we'll do actual testing if we notice more problems rising or they become worse. They do sell vegan Omega 3's. They do not derive from fish. I've seen them online. Also, some pesticides that are now illegal in the US are still part of our soil. So, even though they may have been banned for years, remnants of them are still there. You can do a quick search online to find the "dirty dozen" and see what is a must for organic. Things like apples, pears, berries, potatoes should always be organic. I've tried my best to overhaul my kids' diets. Granted, I can't buy everything organic (too pricey for everything) and they still get some things with food dye, but the amount that is put into their bodies is much lower now. We have also dramatically cut down high fructose corn syrup. That's in almost EVERYTHING. Also, nobody should ingest Splenda or aspartame. Some good documentaries/movies to see are "King Corn" and "Food Inc".

An email update form Diana Pohlman (PANDAS Network)... "February 18, 2010 Dear Parents, I am writing on behalf of the PANDAS Network, www.pandasnetwork.org. There has been far more contact with the website than I had anticipated – about 400 families – since July 2009. I had anticipated maybe, maybe, 100 emails by January. The folks that have reached out are some recovered cases, however, most are new onset cases. Since Beth Maloney’s book came out, “Saving Sammy”, there are more cases of older children who suspect long time undiagnosed PANDAS. The starting of this website and the release of this book were sheer coincidence. Next week I’ll send out an email regarding how some of the families are reporting progress in healing. I’ll just let you know now – my son is symptom free – after a 2 year struggle. So hang in there folks. There is a lot of confusion on the Latitudes forum – so I’ll try to not complicate things further. Background of PANDASNetwork I wanted to be clear that this website was created out of our (a few parents and a few docs) desperate desire to communicate the sudden onset of PANDAS to doctors in 2007. About 20 families also had a similar sudden onset in 2007 and we banded together via the Latitudes forum and then shared our stories with a few caring doctors. There was no, and is not yet, sophisticated mechanisms put in place to create a fully functioning non-profit or volunteer base. Several parents are discussing how best to do this. We all work or our kids are still ill…..so it takes time. This brings me to the next part of this note – trying to create a knowledgeable support network for our children and newcomers. Meeting with Dr. Swedo and others Last Month January 2010 Dr. Sue Swedo, Chief, Pediatrics and Developmental Neuropsychiatry at the NIMH, the doctor who named this syndrome, agreed to meet with me for an informal meeting in Washington D.C. about 2 weeks ago. Dr. Paul Grant, also from the NIMH attended, Dr. James Leckman of Yale Child Studies Center and for the latter portion of the meeting, Dr. Beth Latimer, Neurologist. Dr. Leckman, in particular, travelled many hours from CT to attend and show his support of all of us. First,please understand, Dr. Swedo and the others are deeply moved by our children’s illness. They are working very hard to create a cohesive diagnostic criteria for PANDAS. They are also working hard to champion funding for a study on PANDAS that will lay to rest the debate of whether this illness exists or not. When we spoke they were often moved to tears relating stories of families struggling with PANDAS. Parents – please clearly understand – these doctors and several others not named here -- understand our growing number and absolutely are trying to find a way to help our children. To that end, Dr. Swedo and others will be speaking at the Autism One Conference this May in Chicago http://www.autismone.org/content/world-changes-may [separate from this meeting, Dr. Kovacevic said a paper documenting his PANDAS patients should be published in the springtime. When I learn where it will be published, I’ll let you know.] Brief Notes of the Meeting Dr. Swedo recently wrote a Rebuttal Letter to the Editor in Neurology Magazine in response to a recent study by Schrag, et al –http://www.neurology.org/cgi/content/abstract/WNL.0b013e3181bd10fdv1. Her response in support of PANDAS should be published in the next few months. We discussed the fact that better guidelines for PANDAS need to be created. Identifying this illness at its onset is far more than sudden onset of OCD or tics. Dr. Swedo was very clear that if it is a PANDAS syndrome then the child should respond to antibiotics within a few days – not a full cessation but a positive improvement. I explained that many of us see early, subtle improvement but convincing the doctors to keep us ON antibiotics, which is usually needed in the first month or not more, was difficult. I expressed that many of the children, including mine, though initially were launched into a PANDAS episode by strep – as the child is convalescing – they become reactive to other viruses. She said that PANDAS in her mind was simple reaction to STREP ONLY. She then said another definition is being worked up for this reaction – PAND – pediatric autoimmune neurological disease wherein viruses also activate symptoms. We talked a lot about a hoped for study on PANDAS through the NIMH. There were no specifics given but I do know they are working on finding a way to get this going. I told Swedo that post-treatment guidelines needed to be worked on, i.e, family members often have undetected strep; immunizations, flu shots and tooth extractions are activating the convalescing child. We talked about a certain serotype of strep (maybe M1 or M18?) seems to be harder to kill off with the antibiotics and that there seem to be some areas of the country that has more resistant PANDAS cases. No one is certain. There are reports of one child in a family getting PANDAS and shortly thereafter a second child developing PANDAS. They are not sure what to make of this yet – genetic coincidence or strep serotype. Swedo and Grant know that we have gathered approx. 200 case stories of PANDAS and are trying to find a way to help us use those stories in a productive way. Swedo has herself has heard many similar stories. I told them it was urgent that if they want to stop the onslaught of inaccurate reporting on PANDAS that they needed to help us find a way to write A SCIENTIFICALLY BASED BOOK. The sensationalized stories are not enough to convince the medical community. At this point, all the doctors are pushed to the maximum with their other professional responsibilities – I’ll keep prodding to find a way help them get the word out to the medical community. I just saw a clip of the movie, Extraordinary Measures, and it reminded me of what hand-to-hand struggle these PANDAS researchers are going through to prove our childrens’ illnesses and how much we parents need to keep pushing for help. Lastly, during the summer many PANDAS researchers will gather at the NIMH to discuss their findings. Something that has not happened before. Certain doctors in Denmark are very interested in Dr. Cunningham’s work on CamKinase increase in PANDAS children. The Columbia “mouse study” used her work to induce PANDAS in the mice. Her work is very important and I hope any non-profit we come up with…..will help fund her lab. Hope this note was encouraging. The doctors really feel it is not long off before PANDAS will be understood. They expressed a great deal sadness about the tremendous financial strain some of this medical treatment causes us let alone the emotional trauma. Thanks and wishing you well. Diana Pohlman California"

tired mom, Are you thinking the Mycro P didn't clear? If so, Augmentin will not kill Mycro P.

My non-PANDAS son had it. He's doing well. Thank you for asking.

I wonder how it is determined if a person gets clindamycin, Biaxin, or Zith for Mycro P and PANDAS.