thereishope

My theory... Some kids is part genetic, some kids part strain, and there's environmental factors added to the mix too. For my PANDAS child, his first PANDAS excaerbation was his first known strep infection. He had been swabbed previous times when he had croup, general illness,and it came up negative. So, Ithink for him it was his first strep infection. My other kids, their first strep infection was at the same time as my PANDAS son 3rd strep infection. I had ruled strep out in family members every time. Neither of them show signs of PANDAS. Ages at time of strep infection was 8 and 2. Found out they had strep when I was just ruling it out. All 3 of my children do not get symtpoms of strep. My older son went on to have Mycoplamsa just short of a year after his first known strep infection.No PANDAS or PITAND present then either. It looks like they are in the clear of PANDAS and I pray it remains that way.

It sounds like it might spark rages.If you go to the main forum page and type "Singulair" in keyword, threads will pop up. Here's one for example... http://www.latitudes.org/forums/index.php?...mp;hl=singulair I saw some posts warning about it dating as far back as 2008.

Good to hear you had a good appt. However...be watchful on Singulair. Some PANDAS kids do not react well to it.

Well, you guys are the healthiest people I know so I know diet Isn't the problem! As others have mentioned some people have gone on more than one antibiotic. I know recently one boy who had a stubbon sinus infection lasted for quite awhile. Finally the combo of Zith and Augmentin got rid of it. You don't think you guys can have more than one infection (not just strep)? That would also make it harder to eliminate the strep.

Thank you for coming on here and posting! I hope your son and your family has continued health and happiness!

I have many times I still wonder what I did in the past that warrants my child to suffer with this. I feel like I did something. When he was sick, there were times I just cried, I felt sorry for myself, I wanted to just run. But at some point, you will somehow find the strength while you surrounded in chaos and at some point you pull yourself up and you just keep fighting. It becomes an out of body experience.

I'm right with you! You summed all the anger that we all feel perfectly! Let that anger empower you to fight for your child and get him better!

I was googling about his last night. All I saw for false positives was the suggestion that the person recently had a strep infection that was erradicated and even though the antibiotics killed the strep, there was some left on the back of the throat still and that gave a false +. But then I read somewhere else where that theory was disproven.

If he is responding from exposure, the antibiotics won't help with that. The antibiotics will help to try to prevent him from getting sick. If you are keeping him home, you may have to do so for a week to let it run its course in the classroom. As for Ibuprofen, sometimes it works for my child, sometimes it does not. You can call the ped and see what the highest dose if Ibuprofen you can give him. It may be different than what is on the label.

So principals are PANDAS specialists now, huh? It's not their place to diagnosis. Do you need help assembling info or anything? If you want, message me his school address or email, I'll put together a packet and send him info...not that he'll understand even half of it. You don't have to take the offer, but it's there.

My son does the same. Screaming, kicking, where do they find the strength? One time it took something like 3 or 4 nurses AND my husband to hold him down to get a swab.

Maybe he didn't get a good swab on the second swab for the culture. I'd trust the rapid. Did her PANDAS behaviors improve at all while on the antibiotics?

I am so sorry you're going through this. Have you had all family members checked for strep? If not, check everyone. Also, if strep has been the past culprit for you, I suggest taking him in for a strep test. Yes, you run the chance of a false negative since he's on abs, but some have gotten even + rapids while on abs. If he can take Ibuprofen, try giving him that too. Some have found that it will help ease PANDAS symptoms. Give it a 1/2 hour to kick in. Does he have seasonal allergies? if so, keep those under control as best as you can. We're here for you, Nita. You're not alone.

Okay. here is the link the article as it appears by elsevier... http://www.elsevier.com/wps/find/authored_...anynews05_01495 The title in that page appears as so... I actually do not see the author of the article. Does anyone else? All I see is this... Media Contact: Maureen Hunter Strategic Marketing Manager - Elsevier +1 215-239-3674 m.hunter@elsevier.com Boy, I really don't want to start another witch hunt where we all attack someone. So, I want to really think this through. The way this article is done is confusing! I'd just drop it if it wasn't hitting so many outlets. This is Leckmans' "paragraph" So, who knows if he actually even read the whole article. I think the issue is with Elsevier, not necessarily Leckman, and how it was written. So, the part we have a problem with is... So, when we write a comment, include a link to the Columbia mouse study to comabat the study they used to disprove PANDAS. Then Swedo's quote about other triggers in subsequent episode to combat the second paragraph about no strep infection and remind them about how some kids will have strep w/o a rise in titers, if that is what they finally used to deem they did not have a strep infection. And, finally, how more research needs to be funded so an actual diagonsitic test is developed to avoid all the confusion in the med community. Anything else?

I've experienced both ways. Once with the fever being there and once anincrease in symptoms about 3 days after the fever broke.

Worried Dad, I sort of defended him too. I am still a little confused by the article and really need to disect it. Maybe it's the way the reporter inserted his quotes or something. I do think a simple comment posted by a few parents saying that a diagnosed PANDAS child can have an increase in PANDAS symptoms with stress, etc etc. And post a link to a reputable website for more info. I still can't do it today. Maybe I will be able to do it tomorrow.

Welcome. I have to ask some follow up questions. -How severe was the onset of tics? -Are there any other symptoms? Following is a ist of some of the possible symptoms. Not all have to be present... -I would also ask what kind of baby was he? Was he overly clingy, colicly, poor sleeper, heavy into rituals (ie. bedtime routine)? -Have you taken him in for a strep test since the onest of tics? Even w/o symptoms, a child can have strep and the vaccine could in some kids put the immune system into overload. -Currently, what is your doctor suggesting? Here are the links to those bigger threads that Mom referred too... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Signs of OCD in a young child http://www.latitudes.org/forums/index.php?...ic=6153&hl= PANDAS Flowchart http://www.latitudes.org/forums/index.php?...ic=6688&hl= I know it is overwhelming. Print them out, read through them, and you will probably have a laod of questions afterwards. Feel free to post any question you have! I'm assuming by your name on the forum you are a stay at home mom? Am I right? SAHM's know their kids. I'm one. If you're instinct is telling you something isn't right, follow your gut.

Really? Do you have any more info that you are allowed to share? Do you know if it was just a conflict in time? Unfortunately, Dr. K. has dropped out of speaking at the AO Conference. I am bummed about it. Now Dr. B. is on the actual speakers list instead.

Huh, I honestly don't know. Yes, he an immunologist and in an interview he said he started seeing PANDAS patients at the request of someone from Yale. I would hope that if someone contacts his office or PANDAS Resource Network (where he is on the advisory board), they will share what steps a patient needs to take if ultimately their goal is IVIG with Dr B. Good question! Who wants to contact and find out the steps? I'd hate for someone to see him to find out they should have seen someone else first.

If I can publicly post a comment, I do that so even if the writer disagrees with what I say, the public still has a chance to read my view. I agree, that almost something like our own "press release" in response to the article would be nice. But it needs to be polite and to the point. If we start a lot of lecturing they won't read it. Do you want to take a try at writing it?

See, I think would say Dr K. I believe there is a connection between autism and PANDAS. I think both camps can learn a lot from each others research. Dr K, Dr T, and Dr Latimer are all speaking at the Autism One Conference. They will also be in the think tank, as well as Dr B. So, maybe if you feel up to it, you could send a copy to all of them. You never know, it may reinforce something one of them already has a hunch on but hasn't made public.

We'll keep her and your family in our prayers. Let us know how the appointment goes. From his interviews, it sounds like Dr B is very "pro-IVIG" (if you know what I mean) for PANDAS so I have a feeling he will prescribe it.

Well, I think when I find a little more time (hopefully in a few days while the story is still fresh), I'll just simply go the various places that are posting this article and comment. I always try to write it calmly so they will hopefully take the comment seriously and I include a link to a site such as www.pandasnetwork.org so they can see what these disorders really entails. I'm tired of this disorder looking like a just a bunch words or a game of whose going to win the debate. People need to remember that there are kids, adults, families really and truly affected by this. Again, there's just too much drama and suffering in our own, independent lives to keep playing games with these people.

OMG! I have a google alert set up for PANDAS...that's how I find out about these articles. between the day I posted this and today there are so many websites posting this stress story! I feel like we need to go in "damage control" mode.

Oh, that's right. I wouldn't worry about the whatever caused the bronchitis in your other daughter doing something to dd7. You're gonna worry until you get her swabbed, so I say just get it done.