thereishope

Being that you live in WI, you might want to read the threads on Lyme as well. Here was one good thread on it, but there are many out there. http://www.latitudes.org/forums/index.php?showtopic=9327&hl

There's another thread on the board titled "What to tell school". I listed a few links there. What to tell school thread

I'm happy to hear school went well!!!!!!!!! Does your daughter do better with routine and knowing what to expect? If so, would you consider switching morning/afternoon by quarters or semesters so she's not lost in the class if they continue a discussion from the previous day? Just a thought...

I think when that study was mentioned it was going to single out kids in their first exacerbation. It would not include kids who have had subsequent exacerbations. Packer Fan's child has had more than one.

Does your child have a PANDAS diagnosis in writing from Dr K? If so, that would hopefully carry some weight. It is up to you how far you want to go with the school. If the prinicpal and staff at the school will not help and they are actually hindering your child's progress, contact the district and you can get an advocate o help you too. How old is your son? As for the IEP and services, schools guard that like it's gold. They give out the minimum. Was that 50 minutes one day a week, split up between days? My son gets speech servcies and I had to fight for 45 min a week. Thsi year, because of his improvement, he's down to 30 min a week. Again, if you want moer in his IEP and they are not budging, get an advocate..and I do not they think they charge for services. Finally, here's some links for you. Consider printing them off and handing them to the school. Just make a binder and hand it, in person, to the principal, one to the school psychologist and one to the school nurse. http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf http://www.schoolbehavior.com/disorders/p-a-n-d-a-s/ http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice http://www.latitudes.org/forums/index.php?showtopic=6506 http://www.latitudes.org/forums/index.php?showtopic=6265

Welcome. I am not aware of any. There are a few who have gotten IVIG covered by insurance, but I believe most pay it out of pocket. What antibiotics has your child tried? Have you cleared all family members of strep? Has he ever had a steroid burst?

I'm with you with the tick fear, philamom. I had to google an image of a tick, then I counted the legs and realized there were 8 like a spider. So, I had to ask my husband that grew up in WI if I would know the difference between a spider and a tick if I saw one. He assured me I would. I am searching for an Avon seller in the area to buy the bug stuff Lyme Mom recommended. And I know we have a deer living across the street in the yard of a foreclosed house.Oh, man, I never did good with bugs and now this...

Yes, you can engrave on the back of the original one and/or you can add extra discs. On the page, it says.. *Each letter is placed by hand and not machine engraved making these charms perfectly imperfect! If you would like to add additional name charms I would be happy to create a custom listing. Additional round hand stamped charms are $15 each. You may also add a customization to the back for $5 each charm. Please convo me! If you want the customization with names, you can click on contact seller and let her know what you want before you purchase it. She'll take it from there.I have a feeling customized pieces get their own item number. Thank you for helping with everything, Jill!

Here is a link to PANDAS Awareness jewelry. The collection so far is a necklace and a coin. PANDAS Awareness Necklace PANDAS Awareness Pocket token for Dad The words on the sterling silver token are “no child should suffer”. The emerald color jewel was chosen to represent renewal, growth, hope, and health. The center image can be chosen by the customer. Shown is a hand, but a star, scroll, swirl, and more can be chosen instead. Directions for switching out the image is on the webpage. If you would like to add something to the back of the coin or add an additional coin to the piece (perhaps with a child’s name) you can do so for an additional charge. The size of the token is shown on the coin page. It is in between the size of a dime and a quarter. $10 of every piece sold will go to OU PANDAS Foundation and Dr. Cunningham’s research. You can purchase these items online via paypal or you can contact the seller and make arrangements to send a personal check or money order.

JAG...I was thinking they may add an "i" in there and coin it PANIC. Don't like that....

Boy, everyone has these "insider scoops" but me!!!!!

Yes, it's the beginning of what can be a lot of good things for our kids, but the fact that he can walk away from this and technically say "I told you so" drives me up the wall. I agree, the new name will not have strep in it.

You know how I feel about that man. He said one thing behind closed doors and he says another thing in public. If you are going to be a naysayer of PANDAS, then at least be consistent about it!

I'm glad to hear he is making progress! Don't get too discouraged when some OCD that was shed comes back. That would happen to my son when he was still overcoming everything and he'd get tired, stressed or starting to attack another OCD tendency. I hope you continue to make great strides. After a while, once my son start overcoming a decent amount of the OCD. I would start seeing some OCD tag along for the ride and shed without us trying. Minor things, but still good to see. Hopefully, you will have that too!

How have their allergies been? Ours are coming back early this year. I may have to start my one non-PANDAS son on allerg meds in the upcoming days. Last year, I didn't have to start them unil late Sept.

My son is picky. He will not swallow a pill, will not let me try to diguise it in food, will not take one with sour coating on it. When the kind we bought was discontinued, I switched to a bag of Dr Sear's Brainy Kids for a month. My son tolerated, but said he hated it and only took it when I promised I wouldn't buy another bag. He said it tasted like a thick piece of fruit leather. Now, we bought Carlson Labs - Very Finest Fish Oil For Kids-liquid. I was nervous because of the price and what if he didn't like it, but many on here suggested it. Well, he likes it! He really likes it! He said it tasted like lemonade with extra water.He only has to take 1/2 tsp so it's not much at all.

Nicki,welcome. I'm in a rush but I wanted to comment about his upcoming kindergarten shots. I live in Ohio too. They are adding even more vaccines to the roster for entering kindergarten in OH!!!!! Now, a child will be required to have a second chicken pox, a 5th polio (depending when the 4th one was received), and another DTaP. Here's a link to requirements http://www.odh.ohio.gov/ASSETS/B20964AA72FB4227BE170B9FE00E2F3B/sch0911.pdf Anyway, in OH, you can opt out of vaccinations with a medical exemption (your son might be eligible for this), a religious exemption, and/or a philosophical exemption. Call your school now and see what paperwork you need filed so it does not disrupt him going to school. Schools are open for questions now even if the school year didn't start. Did you report your son's reaction to VAERS and the NVIC?

I can only guess that when a child goes into a full exacerbation following a vaccination, the child probably already had a hidden infection and that vaccine sent them overboard? The vaccine stimulates the immune system more. Nasal mist....I remember reading a good amount of people (my own friends, not just reading online articles) getting a sinus infection within a couple weeks of receiving the mist. Also, a mist is a LIVE vaccine. PANDAS kids and live vaccines are not a good combo. Finally, a live vaccine can be shed. On package inserts, it even says "FluMist® recipients should avoid close contact with immunocompromised individuals for at least 21 days." Why? Because it can be shed and they can transmit the virus. It's the same thing with the chicken pox vaccine. As for you other family members, I can understand if the parents may want to get a flu shot (just don't get the mist) to try to prevent the flu in the house, but remember it contains the H1N1 this year. I just want those who were against the H1N1 vaccine to be educated on this. Every year, the flu shot contains 3 strains of the flu. Last year it was separate only because it wasn't ready yet at the time the seasonal flu vaccine was developed for the year. So, for parents, it's your own personal decision. As for your other kids, again, that's up to you and also how you feel about the H1N1 vaccine being added or a flu vaccine, in general. Also, how secure you are in believing that your other children are not PANDAS/PITAND. All I can say is if you give anyone the flu vaccine, please make sure they are entirely healthy.

Oh, no!!!!!!!!!!!! Is there a way you can separate the girls for few days? Maybe dd10 can stay at a friend's house. Time to call in some favors. Yes, even if she tests negative tomorrow, get a script. Because of her clinical symptoms and your other daughter, I don't think you'll have trouble getting that. Don't let her use mouthwash prior to the appt. I've read that could cause a false negative.

Well, if your kids had probable H1N1, as did mine, they will not catch that same virus again. They have immunity to it. http://www.mayoclinic.com/health/swine-flu/AN02039

Definitely not the nasal mist....that LIVE!

Also, if you want to do the Cunningham test, steroids should not be taken before or during the time of the test.

When my son first went to the pediatrician with his behavior changes (before we knew he had strep and PANDAS), she too asked about iron levels and possible anemia because of he very fair skin. Well, it wasn't iron, it was an active strep infection without a sore throat or fever and it was/is PANDAS. Follow your Mommy gut.

When my kids were little and still sleeping with us, they couldn't fall asleep without me in bed. I'd lay there cuddling them until asleep then my husband would help me sneak out of the room, Softly pick up those kid feet off of me and replace me with a pillow so they thought I was still there. Depending on the position the kid was in, it would probably look quite comical watching us trying to get me out of the room. Yes, I was tired, but could not go to bed at 8pm every night with the kiddos!

I used to live in Forest Park. Miss those days... I know someone else that lives in the Chgo area and will pass on your email.