thereishope

Welcome. Reading your story, makes me wonder if those diaper rashes were strep too. Here's some info on PANDAS kids as it would pertain to your post.... -Some PANDAS kids will react to exposure only. This would explain an rise in tics with exposure to strep in school. -I wonder if the cough was a habit or tic that morphed into OCD. A tic cannot be stopped by a bribe, but sometimes an OCD habit can. Soem of my son's OCD was able to be controlled by him through bribes. Not many, but a couple. -Because a cough is involved, you may want to also rule out Mycroplasma Pneumonia. This is also a trigger for PANDAS kids. -Not all kids will have a rise in titers. Did she have a rapid strep and culture done prior to the blood test? If so, what was the result? Was this blood test done because of the classmates having strep? Taken from the PANDAS Fact Sheet If you have not had a rapid and culture done on her throat yet, do that. Even though the her titer test was normal. Here are some links you may want to read... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Would you mind sharing the name of the neurologist you will be seeing? If you wish to keep it private, I understand.

What ever happpened with the allergy shots? Did you stop them?

No c-section. But I learned from my second child to get epidurals before they break water. I delivered her in about an hour after they broke it. With each baby, the baby got bigger. One of the reasons, I am done having kids! Oh my goodness! Hope you had a c-section! Wish I would of...

I get confused on the carrier status. Just because a child does not show strep symptoms, it does not make them a carrier. My kids prove that. Does anyone know if he has kids? Does he understand how the secondary symptoms do vary between a PANDAS child and a non-PANDAS child? I think someone needs to remind everyone that the acronym PANDAS does not say "strep throat". It stand for strep infection. I just don't understand what any naysayer's explanation is for cut and dry PANDAS kids. If he, or anyone, says PANDAS doesn't exist, I just want them to give me an explanation for what I experienced with my son.

Nail biting is an OCD habit in people. It's hard habit to break. Will he wear the gloves at bedtime? If so, you could put a topical antibiotic on at night and cover them. If he is avoiding washing his hands, can you replace hand washing with a hand sanitizer. The alcohol based is what kills the most germs, but that might burn. I have seen ones on tv that are more like a lotion and shouldn't dry out hands.

My daughter was 9 lbs 10 oz at 38 weeks !

I also read that Mycroplasma is also known to cause Tourette's. However, I don't know if the mycro P is erradicated, if the Tourette's induced by it stays or goes away (making it PITAND).

Link to the fb page http://www.facebook.com/pages/Pepsi-Refres...82.309749594..1

I have a question, once the inflammation goes down, is the child suppose to be "back to normal" or is there a span between inflammation going down and normalcy? I just keep going back to the thought of there being a bruise that needs to heal and that is also why timelines in recovery vary. I also think once the inflammation goes down, there's a lot of reprogramming that has to go on within the child's brain. Their thoughts were messed with so much. I can see how confusion over "what is normal?" might occur in their heads. That would explain why my child had residual OCD.

Did you read my thread about the new DSM-5 being in production? the DSM-4 was published I believe in the early to mid 90's, even prior to Swedo's landmark paper. Currently, they are revising the DSM 4 and omitting, changing, and adding new things. I see this as an opportunity to try to get PANDAS into an official, let's say...handbook for doctors. if it is listed in it, it will get a diagnostic code and officially be recognized. Yes, it is a book on mental disorders. But when PANDAS surfaces, it is (my opinion) a temp mental disorder. God knows when the next DSM will be in production. The DSM 5 isn't even scheduled to be out until 2013!

Mass General is noted as the recipient of all donations given to the PANDAS Foundation on the website. Dr Geller is based there.

About preschool, if it means anything, my 2 boys didn't go to preschool until right before 5 years old. Turned 6 in kindergarten. They are well adjusted, on track for school, and doing well. One year of preschool is definitely enough. My PANDAS son is 6 and currently in kindergarten. My daughter will be attending preschool next school year. I am so nervous sending her there knowing at that age, fingers are still put in noses, hygiene isn't that great, etc. It's gonna be hard for me.

If you add anything else to the poll once it's started it deletes all info and won't let people revote.

I looked at the site again very quickly. Now I'm not sure if PANDAS would fall in that catagory. It's actually titled "Mental Disorders Due to a General Medical Condition Not Elsewhere Classified" . I think that may be if you don't know the reason for the disorder surfacing. However, there is this catagory "Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence ". I would like that better than falling in the anxiety disorder catagory like OCD does. It does have the clause usually first dx in childhood which leaves it open for teens and adults as well.

Well, even things like phonological disorders (my son has) falls within the DSM book. It's not a mental disorder. There was a section marked something like mental disorder caused by medical condition. I tried clicking on them to get more of a description but nothing was there. I suppose I'd have to refer to the DSM IV book to get a feeling for that catagory.PANDAS is like a temporary mental disorder caused by a med condition (autoimmune). If it had a catagory in that book, it would also force psychiatrists and psychologists to acknowledge PANDAS. I was looking at it this way, we can at least get a code for diagnosing PANDAS. That may help with insurance too. I didn't see the Swedo name. I'll have to browse around the site more. I just thought it was neat they were actaully asking for input. Granted, suggestions may not be used, but it's a start.

If we want to suggest PANDAS being added, what catagory do you think it should fall under?

If it means anything, my son had strep triggered PANDAS 3 times. All 3 times, he remitted with just antibiotics. Honestly, I know if I had gone to DrK in his second or third exacerbation, I probably would have been told he needed IVIG because of the severity and the timeline in recovery. Not that I actually had a consult with him, but from following everyone else stories, I probably would have been told that. I have mainly been through those 3 journies w/o this forum or any support. it's intersting to think how things might be been approached different if I had visited this site earlier on. Anyway, like I said, my son has had strep triggered exacerbations 3 times and he is doing well now. No PANDAS symptoms. He has been strep free (knock on wood) since March 2009. All PANDAS symptoms and residual OCD gone since Aug 2009. So even though I do have a lot of respect for Dr K, my son is proof that abx alone can work. However...I don't say he's cured. he's in remission. I do not think anyone can be cured. Side info...my son was 5 at age of onset. We realized he had strep about 2 1/2 weeks after sudden onset. We caught the strep in excaerbation #2 and #3 within a day of sudden onset. So I realize we caught we caught it fast every time. I really believe each child is different. There is no set rule or set treatment. What works for one may not work for another. A lot is following your parental instinct and just hoping and praying for the best. I think it's important for those who cannot ever afford IVIG to know there is hope and for those who would rather not to do IVIG (for whatever reason) to know some kids do get better w/o it.

I'm glad you took him to the dr. Strep can be the cause of ear infections. Make sure you take him for a follow up later to make sure it cleared after abx.

In regards to autoimmune issues and preterm labor, my OBGYN for baby #2 and #3 said with toxemia, the body sees the fetus as a foreign object and sets out to rid the body of that foreign object. I had extreme inflammation and blood pressure was very high. He went on to say that if you have subsequent babies with the same man, your chances of toxemia lessen.At least that how I think he explained it. It was years ago. For those who had premies...may I ask if they know the reason for prematurity?

Remind them he can get a false negative strep test if he's on antibiotics.

PANDAS son....did not receive anything while pregnant or in labor. Except...I was induced due to his size at 38.5 weeks. Non-PANDAS son.....went into labor at 32 weeks. Lungs are developed so I did not receive that med. They did stop labor for about 24 hours. Not sure what meds were used. Reason in hindsight...toxemia. Non-PANDAS daughter....Given nothing during pregnancy or labor.Except...induced at 38 weeks due to size

It's disgusting how the FDA allows HFCS to be labelled as "natural'. People, if its says all natural, still read it. That is not regulated by the FDA! Also when it says "sugar free", it doesn't always mean fruit sweetened. It usually means Splenda or aspartame has been added. They grown corn now specifically for HFCS. When the corn is fully grown, you cannot eat it since it tastes awful and has nutrional value. In King Corn, it explained how this is the first time in history a farmer cannot feed his family from his own crops.

Some PANDAS kids have adverse reactions to SSRI's. I'm not saying to take her off of them right now, but rather it may provide some explanation. Taken from PANDAS Fact Sheet.... http://www.latitudes.org/forums/index.php?showtopic=6265

yes. It's normal to feel so overwhelmed by the situtaion that you take it out on each other and all the small, unimportant things, seem huge and starts fights between the two of you.

Corn causes inflammation? That explains a lot. I mentioned these before but the documentaries Food Inc and King Corn are worth watching. It's explains how almost everything derives from corn and almost everything we eat has corn in it.