thereishope

I wonder if it's a sensory thing. For some kids, it's the opposite. If you just brush up against them and give a light tickle, it causes pain.

Swedo quoted that number last year. I believe in the Scientific American Mind article. However, that number is based on what diagnosing critera and may only be quoted for PANDAS and not all the additional PITAND cases out there....which is a lot. i dont know how long ago that thought was made..but with light of myco p and lymes.. i bet the number is higher..and as more illnesses are linked...who knows....i know people with celiacs can express with autism or pan/pits(tics/ocd)

I approached that designer after seeing the other causes she has designed for and I recognized many of them including Global Genes Project so I knew she was trustworthy. 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/token page (there's also a pocket token for dads). 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. The designer has the info for the donation.

Glad you found another piece to the puzzle. So, what antibiotic did the Lyme specialist give?

May I ask what section of Ohio you are in? 7 is definitely NOT too young for therapy. Search out new therapists and/or psychologist. Also, look into some books on your own. They will help you understand a little more what your daughter is feeling and will tecah you some skills you can start working on at home. Here is a link to some books http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&hl=+tamar%20+chansky&fromsearch=1entry52242 I personally like "Freeing your Child from OCD" by Tamar Chansky. I agree she needs a longer script of antibiotics.Also, you can try Ibuprofen. Some kids will have an easing of symptoms with it.

People think they have to say something because they don't understand and it makes them feel inferior. I've gotten the "well, I never heard of that" with the unspoken undertone of ...if I never heard of it, it must not exist.

I would think so. You can list OU PANDAS Foundation. That stands for Univ of Oklahoma PANDAS Foundation and has no affiliation with Ms Maloney's PF. The proceeds donated to OU PANDAS Foundation will go to Dr Cunningham's PANDAS research.

Welcome. I'm in a rush and couldn't read your whole post but this sentence popped out at me..... fyi...my son had no tics. My son is 100% PANDAS. Don't let lack of tics or choreaform movements deter you from a possible diagnosis.

My kids eat "Yoplait Thick and Creamy" and the new "Simply GoGurt". Reading philamom's post, I guess it does have that strain in it. It doesn't affect him at all. As for cheese, regular dairy cheese....cheddar, colby jack..... He just doesn't go over board at any given time. fyi...Stoneyfield makes a probiotic yogurt. I've never tried it since my kids like thick yogurt, but at least you'd be getting probiotics too.

About the general topic of dairy.....I've found that since his last exacerbation, he doesn't eat a lot of dairy. I let him choose when to have a glass of milk. He likes milk, and I will offer it, but he rarely chooses it. My gut tells me its his body telling him to limit it and I respect it. My son's main form of dairy is probably yogurt and cheese. Even that is not to an extreme. As for the strep strain in yogurt, honestly I don't know if his has it in there. I don't think it does.

I know Murphy is doing a Omnicef study. I thought Geller was going to do an Augmentin study, but I thought that got postposed. I don't think PF had any direct affiliation with it.

Antibiotics are used to help erradicate the infection. Once the infection is gone, the antibody levels will hopefully lower.Once the antibodies lower, they will no longer be causing inflammation. The inflammtion will now have a chance to decrease. That is when you will see improvement. Yes, some kids do improve on antibiotics. The tricky part is finding the right antibiotic for your child. Some websites you can pass onto your dr are www.pandasnetwork.org www.pandasresourcenetwork.org Some useful links PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Amoxicillin Failure in Strep http://www.entrepreneur.com/tradejournals/article/169459644.html NIMH Director's Blog http://www.nimh.nih.gov/about/director/index-ocd.shtml

My son improved with antibiotics and time. However, we never did the Cunningham study. I wasn't on latitudes for his first two exacerbations and when he was in his last full blown exacerbation, the Cunningham study was just really starting to be talked about on here and I knew he was PANDAS. Granted, I'd be curious to know now, but I have no real reason to do it.

Welcome. Here is a flowchart that may help http://www.latitudes.org/forums/index.php?showtopic=6688&hl= As for ERP or CBT, I agree that it is something to look into. Sometimes, if a child is in a full blown exacerbtaion, they may not be very repondent to therapy until the correct antibiotic has started to work. But then a lot of therapists have long waiting lists so it's worth looking into one now. When finding a psychologist/therapist, interview them ahead of time and throw the word PANDAS out tehre to hear what they have to say. You may weed a few out by their response. Finally, some kids will have an easing of symptoms with Ibuprofen so you can try that too. But, that's more of a band aid and one needs to conitue to get to root of the problem.

Taken from the PANDAS FAQ page http://www.latitudes.org/forums/index.php?showtopic=6266 Tests: Predinsone Burst Test Q: What is the purpose of a prednisone burst and why does it work? A: The prednisone burst is used to temporarily slow down the immune system response by reducing inflammation (from T-cells) and reducing antibody production by B-cells. It is thought that prednisone helps close the blood-brain barrier temporarily. Essentially, abatement of symptoms in a prednisone burst helps indicate that the issue is auto-immune. It is important to know that the prednisone burst is a short term treatment (typically 5 days) and is not intended as a long term treatment. Prednisone does have significant side effects particularly for any long term use. Prednisone has no known positive effect on non-PANDAS OCD or non-PANDAS tics. Q: I've heard that some doctors use a 5 day burst and others a 30 day tapered burst. Why the different protocols? A: The 5 day burst is used by some doctors as a diagnostic technique to confirm that the symptoms are auto-immune in nature. The longer tapered burst theoretically can help break a cycle of inflammation by suppressing the creation of new antibodies while the existing ones get used up. A longer sustained suppression of symptoms does help remove placebo effect, but also has more risks due to the impact of prednisone on the rest of the immune system. Q: How long after starting a prednisone burst should I expect a response? A: Similar to antibiotics, most parents have reported significant immediate improvement during severe exacerbation and temporary remission of symptoms within 2 weeks post initiation of prednisone. This test seems to vary with age, symptoms and gender. Caution should be noted here that parents of children with

I'm sorry he wouldn't go to school, but I am happy you will have support. It makes it "easier" to at least try to get your child to school and overcome their fears and anxieties. Even if he went for 2 hours, at least he's going! That's a big deal.

O...M...G...I'm speechless. I am so sorry. ....I am secretly happy she told them off!

Actually, there is a pinned thread for acronymns on the top of the forum. http://www.latitudes.org/forums/index.php?showtopic=7841

Wow! Looks like it the time of year for nose bleeds. I must have missed this thread last week. My non-PANDAS son has been having nosebleeds, congestion, etc. Started giving Claritin and it wasn't helping. Finally, took him to the dr today and he has a sinus infection....right for the start of school. Like my PANDAS son last year, he got an allergy induced sinus infection. Anyway, the dr said the nose bleeds were caused by the congestion and irritation of the sinus infection. I actually looked this thread up because he was also prescribed Nasonex. Which I don't understand how docs decide what brand to prescribe.In Jan, he gave my other son Flonase. Is Nasonex and Flonase comparable or are they different? Is it okay to give my non-PANDAS son Nasonex?

Welcome. While waiting for an appointment elsewhere, you can do some basic things like have your pediatrician give your son a strep test. If he has an infection, therapy alone will not rid the problem. If he has a detectable infection, he can start antibiotics immediately. In my opinion, every day counts when the child is not on antibiotics. He needs to get rid of any infection before recovery begins.Many kids do not respond to therapy until antibiotics play a role for awhile. Also note that strep occurs in more places than the throat. It can also be in the sinuses, gut, anal, and more. Just because he doesn't have strep throat, doesn't mean he doesn't have strep. If a rapid and culture both come back negative, you can do blood tests as well.

Tell him that he isn't the only child that has intrusive thoughts about hurting someone else. Even though my son did not have this, I have read it a few times. He may be comforted to know he isn't the only one who has thoughts like that. And the naming of the OCD is perfect! That's what they do with CBT. Good for him!

All of your "cyber Moms" are very proud of you! I'm sorry you didn't leave with a prescription for Augmentin, but perhaps after those blood tests come back you will find some answers. We're all rooting for you, Emerson!

Yes, he does:)

Welcome to our forum. What antibiotic is your son on? As for how long it takes to see improvement, it really does vary child to child Taken from the PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Q: How long after starting antibiotics should I expect a response? A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics. A lot of PANDAS kids do not get symptoms of being sick with strep, yet have it. So don't let the lack of hurting or lack of a fever cause any doubt. Has Dr B discussed whether you should have your son take the Cunningham blood test? If you haven't done so already, also rule out strep in family members. As for your husband, he's probably in denial or simply blinded by the fact that your son is suffering. I don't have real advice on that. Since he has his own demons and if he is not ready to tackle his own problem, I don't know what to suggest to get him on board. But I applaud you more than you know for stepping up and getting the job done on your own! I sure hope you take a moment and realize that you are an EXCELLENT mother.

I'm so happy for you! I'm trying to recall...did you get IVIG too?