thereishope

I agree that there's a fine line between being understanding and reinforcing the fear and giving the OCD (if that is the reason ) more strength. With my son, even if I knew darn well he wasn't making it to school that day, I went through the whole routine of getting him ready, eating breakfast, having lunch ready to go. Often we didn't make it out the door, then there were times we at least got in the car and drove to the parking lot of the school. I always tried to have the mentality that you never know if that's the day when an accomplishment would be made and the opportunity for that to happen had to be there.

Personally, I don't think it's appropriate for the school nurse (or is it just a health aide) to call your child's doctor for that. With PANDAS and PITAND, reasoning is gone. A PANDAS child, while in an exacerbation, often cannot compromise, be bribed, or be threatened with being punished. It just won't work. It's one of those things...unless you live it, you just don't understand.

I have not had IVIG so I can't give an opinion on timeframes. But I'm bumping this up so hopefully others will answer. As for my son, he kept getting sick over and over for awhile so I was very overprotective of him. For my own mental health, we did baby steps. First it was meeting elsewhere (so I didn't have to worry about kids picky their noses and touching our stuff), then it was only one friend over, and now we are back to our social involvement pre-PANDAS. I still keep him away from people if I know that the possibility of illness is there and I still avoid closed in play places like McDonald's. Places that area breeding ground for bacteria.

Buster, you'll regret it more when someone just browses the thread and we have a headline that reads...PANDAS parents not only blame the bear, but cats as well! I can see it on one of those tabloid papers right now!

When I explain it to people, I use the word "disorder". I find words like disease or illness will scare them too much. My son is currently doing well and I still say he "has" PANDAS. It may not be surfaced right now, but the opportunity for it to resurface in dormant in his body. I also say PANDAS goes into "remission".

Do you have your 3 year old on antibiotics right now? That giggling like crazy...I've read some on here say they experienced that with yeast overgrowth. As for age appropriateness, all I can do it relay it compared to my kids. I have a 3 year old girl. She is clingy with Mommy (has been since the day she was born) and she has a hard time settling down sometimes but none of the other things you mentioned.

Welcome. Sudden onset with a positive throat swab. And doctors still doubt this. Can I scream now? I'm assuming he was put on antibiotics for the + throat swab? Which one and for how long? Let's see March 18...what is that...about 3 weeks ago? Have you seen any improvement at all? Here are some useful links that are good for newcomers to read. They may answer a lot of questions or lead you to ask 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 PANDAS Flowchart (good for trying to figure out the diagnosis) http://www.latitudes.org/forums/index.php?...ic=6688&hl= Also, I suggest visiting www.pandasnetwork.org. There is a wealth of info there. And don't feel shy about informing your ped about the website or supplying him with printouts. One more thing....as for getting the actual diagnosis, that is important but you may be able to start treating PANDAS by getting him the appropriate antibiotics in a timely manner. So, if your doctor is willing to do the antibiotics (even without an actual diagnosis yet) that is great. Finally, it's time to bring everyone into the doctor and make sure no one else in the house has strep (even if they have no symptoms).

I'm allergic to cats (real cats, not analogy cats). If I am around a cat and my throat starts to itch and I start to sneeze, I will continue to have that problems for a couple of days afterwards...even if a cat is not around. So, there's your antibody staying in the system after erradicating the trigger.

I think there's still a stigma in society with things like OCD or anything that may be seen as a "mental disorder". I know with us it's autoimmune but the symptoms that arrise mimic a "mental disorder". I think that perhaps your husband is still coming to grips what has happened and he is still finding a way to come to an acceptance. I think as time passes he will come around and slowly open up to others. I deal/dealt with PANDAS in different ways. While we are in the chaos, I keep to myself. As he healed, I opened up. Maybe it will be the same for your husband. Let your husband know that as for school, it should be kept private and the teachers should not be able to diclose info on your child to other parents. If you tell the school, tell them you want the matter kept private. Telling the school can be very helpful in that the teacher will tell you if odd behavior surface. As for family, well, I would probably tell thsoe you come in constant contact with. So they are totally caught off guard if OCD,meltdown, etc should arrise when they are around your child. I'm not going to lie, I had nasty things said about my son and his behaviors by people we "let into our world" and I will never forgive them for that, but I am happy that I have found a type of peace now that I am comfortable sharing my experience with others. Some things I still keep to myself or share with a very selected few.

Agree!!! I still smile every time time he ASKS to go outside, plays with his sister, raves about school, learning and friendship. etc. Things others may never pause at.

My son went from very low point of being non-functional to eventually being "normal" again. This is the reason why it absolutely drives me crazy if someone says PANDAS is controversial or doesn't exist! Then for God's sake how do you explain my son??!!

Something else to add is how some long term "chronic" PANDAS cases may have been sudden onset that wasn't recognized because of the age of the child when it surfaced. Then, as the years pass by, the parent does kind of forgets how overnight the child became colic, or stopped sleeping through the night, or became overly clingy. And I can see a parent forgetting that since everyone around them would tell them that's how a baby and toddler is like. If the child has OCD as a toddler, a pediatrician might say those tendencies are acceptable because kids like routine and thrive with them. If the child continues to wet themself or the bed, the doctor will say it's part of potty training. So many PANDAS or PITAND symptoms can be easily dismissed in younger kids as a part of growing up.Then over time it just worsened and the lines become more blurred.

Something else...I don't think Cunningham's results are exclusive to strep. This was discussed on here before I believe. It shows there was an infection of some sort playing a role in it. Someone correct me if I am wrong.

Did any of you ever have high strep titers or just positive strep tests and/or trial of abx? From Buster's Corner on www.pandasnetwork.org in regards to strep... •46% of subjects presented no ASO rise •55% presented no Anti-DNAseB rise •and 37% presented no rise of either ASO nor Anti-DNAseB

My son had eating issues. Amongst them was not eating at school. Luckily, it was an odd schedule and he came home shortly afterwards, so even if he did not eat it wasn't a big deal. I don't really know why he didn't eat there. If he was fearful of contamination at the school, if he didn't want others seeing him eat...he never told us. But, every day I made his lunch and he brought it to school just in case it was going to be the day that he'd change and start eating again. I made sure it was the same thing every day to avoid changes. He'd bring his lunch with him but never ate.Then out of no where he'd start to eat a few bites. I think it started with one thing...he'd eat the applesauce. The he graduated back to eating everything normal. He didn't do well with a lot of praises so (he hated being complimented when he was in exacerbation) so we never made a big deal out of it when he did eat. Never asked him, just looked in the box to see. We told teh teacher that it was okay if he didn't eat. Some of my suggestions ( and you may have done them already) would be to try to get him involved in making the meal. There were times my son only ate what he made so he made his own lunch. Also, let him know ahead of time what is in his lunch so he doesn't feel caught off guard. Let him know (without making a big deal out of it) that he doesn't need to eat everything in the tote.

Hi. Even though I've been dealing with PANDAS since Sept 2008, it has just passed the one year mark since our last strep triggered exacerbation. That was the one where all 3 of my kids got strep. The first time for my 2 non-PANDAS kids. So, it's very likely that was a strain that year that got a lot of us. As for school, I spoke with teachers, slp (my son gets services for speech through the school) and the prinicpal. I asked the principal to ask the school health aid to call me when strep hit my PANDAS son class or my non-PANDAS son class. They have been good about it. One link that's some have found helpful in getting the school to kind of understand it is... http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf Finally, you can seek out a 504 plan for OHI (Other Health Impairments)that would specify your child's unique needs and protect them. If you can the dx of PANDAS by a doc in writing, you can get it for PANDAS.If you don't, you can seek it under a different diagnosis such as OCD. Even though your child may not have classic OCD, sometimes you just have to play by the rules and bite your tongue to get what your child needs.

Fixit...you can always talk to them. They are watching over you and your son. I had times when my son was bad up and I'd just sit on the edge of my bed rocking back and forth crying like a baby. I had many coversations with my parents (who are up in heaven with yours) while I sat there crying and hyperventilating. There were times I would get this moment of calm and just sense a presence there.

http://thealternativepress.com/article.asp...n-About-PANDAS- "Saving Sammies and Samanthas": An Afternoon of Hope and Exchange of Information About PANDAS

This is the prayer I said every night when my son was sick.... The Memorare Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thine intercession was left unaided. Inspired by this confidence, I fly unto thee, O Virgin of virgins, my mother; to thee do I come, before thee I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in thy mercy hear and answer me. Amen. I continue to pray for my family's health and happiness every night.

Fixit, stay strong! Remind me, are you working with one of the PANDAS experts? The book is "Against Medical Advice" by James Patterson.

I agree we need to all work together. I think for some things the kids may be put into different catgories (dx at sudden onset vs long term). I can see doing this when trying to find subjects for research (that way the researchers are more confident about the dx) or for trying to convice skeptics. The sudden onset (and realizing it at the time of sudden onset) may be "easier" for some to understand and prove to them? I will always include sudden onset PANDAS, long term PANDAS, PITAND when explaining the disorder. We are all in this together!

Believe it is achievable. I think he can achieve sub-clinical. But don't let test scores tell you that. Let the calmness, easiness, and hapiness he will achieve speak for his recovery. Recovery is a long road, but you can and will get there.

Mom....is your son going to therapy for his OCD? I do believe that for some it becomes so ingrained in them (even as a result of PANDAS) that they may have some residual issues they need to overcome through ERP or CBT. It seems like ERP may be more successful for PANDAS kids...anyone agree? But, I also think eventually they would not need the therapy. I think a portion of parents on this forum would say they can see themselves as having a slight form of OCD...but they can live with it, fight it if needed,and they function completely fine. So, dare I say, even if you cannot rid the OCD 100%, it doesn't mean he will be slave to it. I will take my son as example. With the last exacerbation he had residual OCD. We had to rid him of it with at home ERP. The 2 previous exacerbations, all the OCD went away on it's own w/o therapy. But, with the last strep triggered exacerbation, once we worked on all remaining rituals, habits, etc, he was okay. He does not need to continue to work on it or fight it now. Now if we didn't try to conquer the residual OCD head on...I really don't know what would have happened. I will also say that with residual OCD, it wouldn't necessarily worsen immediately after going off meds. It will be at a plateau. Now if it doesn't get addressed in a timely manner, I could see it to start spiralling as the OCD learns it can take more control of the individual. So, Sammy still has OCD? But he manages it without any medications? Would it qualify as "sub-clinical," do you know, or would it register on the Y-BOCS scale? Do you know if he does CBT or ERP? Who is "Jamie" and where can I tap into his/her full story? I am very interested in this particular topic because of DS13's history and current state. It was "Saving Sammy" that sent us down this PANDAS path, and while DS is much, MUCH better thanks to abx, I have wondered if it would be possible to eradicate 100% of his OCD. The book had led me to believe that Sammy was 100% recovered, so I find this interesting info. Thanks!

Here's a copy of an email update I received from PANDAS Network. For those who did not receive it...

Has she seen an ENT? When I look at problems, I try to look at them from different angles. Maybe there's swelling in her throat, swollen glands, or she's overthinking it now and concentrating so hard when she eat that she is making herself gag. If it's just the 2 of you in a room and you cut something soft up really small w/a glass of liquid following, can she do it? If so, practice with her and maybe you can reteach her to eat with confidence again. Try having something distracting on like a tv and stroke her back while she tries it. Ensure her she cannot choke on that small piece of food. Maybe a small piece of yolk from an egg? Does the problem get better when Ibuprofen is in her system?