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Thanks! I'll complete it tonight now that I know what it means. My son's symptoms did vary with each exacerbation. Hi, yes This was really hard to phrase. I meant that if the initial event subsided (presumably with intervention like antibiotics) and then you had a recurrence/relapse, what happened then. I just couldn't figure out how to ask the question. I'm trying to see if symptoms differ in subsequent episodes or are mostly the same symptoms at different intensities. Buster

Welcome. I am happy you have an appt with Dr Latimer. A lot of the symptoms your daughter had/has other kids do too including staring at the sun, crawling around like an animal,having animalistic ways of eating, overall eating issues that result in weight loss, etc. You're not alone and PANDAS isn't as rare as some doctors make it out to be. Until the appt in Sept, I would also consider giving her Vitamin D (perhaps why she stares at the sun), Omega 3's, and probiotics. Some kids also have an easing of symptoms with Ibuprofen. Here are some useful links you can read. Perhaps they may answer some questions or lead you to new ones. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 If your daughter is interested in connecting with other kids and teens, I suggest this website www.pandas-syndrome.webs.com It was started by a 13 yr old boy with PANDAS I'm happy you found this forum!

Welcome. Personally, I would look into it. There are red flags that you posted. Also, a good number of parents on her have been told by someone (whether it be school, a therapist, doctor) that they needed to look into possible autism or Aspergers and it was the PANDAS symptoms. Because she has carried the Aspergers dx for 2 years, I agree to seek out a doctor already familiar with PANDAS/PITAND. I think you may encounter more of a battle with a basic ped that isn't familiar with it.

Ear infections can be caused by strep or perhaps he had a hidden sinus infection that cased problems in his ears. Sinus infections canbe caused by strep too. Even if the doctor says no to other family members being tested, do so anyway. PANDAS kids can react to just being exposed to strep and you want to try to prevent reinfection if you can. And a strep carrier can infect someone (some doctors will say they cannot). How is your son and the tetracycline? I had a reaction to it when I was teen. Most people can take it no problem, but do watch for side effects.If you don't see any improvemnt on that antibiotic, I'd try to get it switched. A lot of people have had success with Augmentin and Zithromax. Some have also had the most success with Omnicef, Keflex. Some do improve on basic amox and pen, but not the majority. You can also start him on a probiotic to be taken spaced out from the antibiotic and Omega 3's. Is he currently on psych meds? Some PANDAS kids do not react well to them and they should be used with caution. If your son does in fact have allergies, keep them in check. Allergies can worsen PANDAS symptoms as well. What allergy med does he take?

Welcome. Ohio, in general, isn't a good state to have a PANDAS child in. They really seem to guard their antibiotics. If you could travel to one of the specialists, it would be a good idea. Now, some pediatricians do prescribe long term antibiotics and are willing to learn along with the patient, so you don't have to rule your doctor out yet. You could also try to find a DAN! (Defeat Autism Now) in your area. They tend to be versed on PANDAS and might be beneficial.

I'm a little confused on ques #7.What is "in subsequent exacerbations, post antibiotics" Meaning during recovery (once we feel the infection was gone), what was present? Does it mean, viral triggers? Or does it mean any exacerbation following the initial one?

Did you try this...

Hello. Which swab came back +? How soon after finishing antibiotics did you retest? Did you retest the throat and the anal area? Now, I have a question for others...if a child has anal strep, should they also be tested for strep in the gut? Did you get the rest of the family tested for strep too?

Oops. Yes, I think I misunderstood you. Sorry. And I don't think anyone would take offense to what you wrote.

My son had contamination, germ, dirt fears along with excessive hand washing and eating problems. When he was overcoming his OCD, he did not overcome all the OCD at once. It was like peeling away layers of some of his tendencies. Some of these tendencies are so much more elaborate than you would think. The fact that he has dropped the excessive hand washing is great! Celebrate that! Is he using a lot of hand sanitizer, wiping hands on clothes, using sleeves as "gloves"? Will he eat with utensils? You ask about replacing one issue for another. Yes, that happens sometimes. If I saw that happening, that new issue would be dealt with quickly so it didn't become ingrained in him. Has your son replaced it? Will he touch food that he does not plan to it?

Well, to be honest, I am a little surprised they are even asking you such detailed questions considering you will actually seeing the kids only for a couple hours a week. Now, my answer might also depend on what grade you are teaching:) Overall, I don't think you really have to worry too much about having a "special needs" child causing a lot of havoc for that time frame. In our religion class (don't know about yours), a craft, stories, interaction, and even an occasional dvd is used. It's just not 2 hours of sitting and listening. Just make sure you have some religion based books available in the event someone does get antsy or if the kids are younger, print of some Veggie Takes coloring pages to have on hand just in case. My PANDAS son is a visual learner. If he sees it, it makes more sense to him. Even if it's just a picture or written down. Also, one more thing, in our elementary school they do such neat things now to get the kids' attention. Instead of being just strict, the teachers will do things like "If you hear my voice, put your hands on your head" or if the kids are antsy, she will have thems stand up and do stretch in the classroom just to break up the day. One teacher ends the day with, if the kids behaved, she turns on music at the very end of the day and let's them dance.

Kay, I had a bout with agoraphobia too! At age 18. And when I was just a week pregnant with my PANDAS son, I had an exposed nerve in my gum. No gum disease, but boy did it hurt! EAMom, I know you said you needed a lactation consultant due to late onset lactation, but I needed a lactation consultant due to my son having difficulty latching on, which caused him to lose weight in the first couple weeks. After he got the hang of it, nursing was no longer an issue. Makes me want to follow up and ask how many PANDAS kids with eating issues related to PANDAS had nursing issues early on as a baby!

I looked at the inital results. What I am surprised about is that obsessions was such a high contender over compulsions-Ques #5. This also explains why many didn;t worry until over 6 month of having symptoms present. Obsessions can be hidden more.Ques #6 I'm also curious to know for ques #11, what the write in responses were. I'm sure any follow up survery will give an inkling to what was written in.

If you can do a search on your computer (under search program and files), search cookies. You'll see something about deleting temporary internet files and/or cookies. Click that and check mark delete cookies. All that does is delete browsing history and such. It will not hurt your computer and you should actually do this occassionally as a maintenance to make your computer go faster. You may have to re-enter saved passwords on websites.

Is this for Sunday school where you will have the kids for about 1 1/2 hrs a day on Sunday? I ask because it actually does affect my answer.

If you delete your cookies on your computer, you can submit another one.

Ques #11...I answered what was the main compulsion. MANY were present and the main ones varied with the exacerbations, but you can only give one answer. After sending mhy answers, I thought of an interesting question. What other diagnosises has your child received (or entertained as a possibility) prior to the PANDAS diagnosis?

As the stay at home Mom of 3 kids all on summer vacation, I can relate to getting cabin fever and feeling like the walls are closing in on you. Try to get out every day, get natural sunlight, and be around other people. I like the idea on online schooling. Do you carry an offical diagnosis of OCD or anything else besides PANDAS that protects you under Disabilities Act? When looking for a job, if you feel you really want to try this, look for a basic part time retail job in a stock room. This will help you ease back into the job force with easier hours and not so much public interaction. You can control your surroundings more. Don't worry about possibily having to quit. Retail is used to dramatic roll over so it really wouldn't be a big deal for them. But don't warn them about the possibility of it either.

Emerson, do not give up hope. Most of the parents on this forum may not have PANDAS themself, but I think every one of us have stories to tell you of suffering and ultimately finding a way to overcome it and now we sit here full of strength and determination to make a better life for our kids. We are all looking out for you too. You are one of our kids, Emerson, and we will help you. When you begin to get that sense of choking, if you can, pause close your eyes count to 10 and just try to swallow. When you get that lump, push as hard you you can to finish the swallowing motion. You WILL overcome this.

Breastfed

My son is turning 7 in Sept. He has had 3 strep triggered exacerbations and for awhile he had exacerbations with viruses and allergies too. Each child really is different. With exposure to strep, some do have the canary effect where they will have a worsening of symptoms just by being exposed. Their immune system begins to mount an attack in order to avoid infection. This is when one has to remember that PANDAS is caused by antibodies and not the strep itself. Currently, thank God, my son is doing well. I do believe if he should contract strep again it will all come back. At the beginning of the school year, I will once again, sit down with the teacher, give history and try to get through to them how important it is that my son does not get strep. I will contact the principal and have a standing order to get a call if strep is in the classroom of any of my kids. I don't have a 504 plan for PANDAS, but the school is willing to call me for reported strep. Do you have your son involved in anything out of the neighborhood where he can be around kids without any preconcieved ideas of what he will be like and react? I do understand what it's like to have kids ignore your child. Mine has experienced it, but mostly because of a speech disorder. His speech is so much better now, but in the past it was very hard to understand and kids were not nice. Your Momma instinct is to intervene, speak up for them, and get them out the awkward situation, but you can't do that. Don't give those teens fuel to the fire by adding "You Mommy has to defend you, huh". Kids can be cruel. Now, if they are really nasty that's one thing and I say intervene, but if something you feel really isn't a sucker punch, let your son deal with it and discuss it later with him in private or let him know ahead of time that you are watching but will not intervene unless they are really mean or he needs you to. Thanks for all of your encouragement. Vickie, I am curious, how old is your son? YOu said with your sons last exacerbation. Am I right in thinking we are not out of the woods? If and when he comes in contact with someone with strep.... are we going to have to go down this same road again? When school starts back he will be in the 8th grade and he wants more than anything to have a girlfriend and just fit it. School starts back on August 4th. I have been taking him to the pool this summer and I watch him when he runs into kids from his school and he tries to speak to them, for the most part, most of them want nothing to do with him. It rips my heart out. I want so much to fix this for him but I know that kids can be cruel he has expereinced it his whole child hood. He has gotten use to this treatment, so when they make it clear that they want nothing to do with him he just goes the other direction. He has been knocked down, (so to speak) , so many times in his life and I just want so much for him to finally be excepted by his classmates.

I love reading inspiring posts. Thank you! I totally agree with the name change and getting past naysayers on board now by being able to "save face". Gilbert is doing a PANDAS presentation at the Univ of Cincinnati in August. I contacted the coordinator to try to get in and you have to be a student there. Anyone a student at the Univ of Cincinnati? I would love to know what he says. I wanted so bad to be able to sit in that audience and speak up. The day will come, it just isn't the right time yet perhaps.

I believe mom md did allergy shots with her son. Here's a thread to read http://www.latitudes.org/forums/index.php?showtopic=6079&st=0&p=46452&fromsearch=1entry46452

People can donate directly to OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 73126

I'm so happy for you! I'm curious, since he finished all antibiotics in June, have you had him tested since? As for maturity, he has a lot of catching up to do. It may take awhile for him to catch up to his peers. With my son's last exacerbation, even once the strep was cleared, it still took months to fully get him back. It also does become blurred in knowing what personality traits are due to PANDAS being around for so long and what is just him. Try to dig dip, find continued patience, and hopefully it will change after a bit. Do make sure he is spends time with his peers so he can see how they act, but also maybe allow him some younger activities or toys if that is what he wants. Let him catch up on lost time of that childhood innocence.