thereishope

I am so sorry. It really saddens me to hear this. It's just proof our kids are never truly safe Were you able to get a rx for antibiotics even though everything was negative? Soem kids can have strep even w/o a rise in titers regardless of what you have experienced in the past. Did you test family members for strep? When is your appt?

I agree with Peg. It's also sometimes a billing thing. They need to put something down. But...weren't you concerned you were Narcoleptic since it runs in your family? Did they tell you that you weren't after the sleep study?

I hope she did well through the night and I hope you were able to get some rest. Let us know how she's doing....

Let's hope it's not strep or that it's only a reaction from exposure to maybe just you having it? Get yourself to the doctor too or get a script if you can w/o going. Keep us updated.

It could be that he did not react to the flu but is reacting to the cold because his immune system is just being hit left and right. Perhaps if the cold didn't surface until months later it would have been a different story. Also, when my son was reacting to viruses, it wasn't always the same pattern. The severity of PANDAS symptoms and duration would vary. Someone once told me that strep often occurs after having the flu. If the downard is bad, you might want to rule out strep.

My son's annual birthday picture (5 years old) has him looking so ill. He was in his first PANDAS exacerbation and we didn't know what was going on. He looks so sad and so sick. I was never able to bring myself to put the picture on the wall or ever show it to any family member. However, his was a close up and there was no doubt that something was going on. You can see it in his eyes...the fear. When you look at the photo, you see a still moment of what was happening in your lives. It's more than just a Christmas card. But honestly, when others look at it, they will just see a boy having fun and being proud. They won't see what you see. I think you can mail it and be confident no whispers will be made about it. Be proud of what you've accomplished.

Omega-3 Supplements Show Promise in Alleviating Depression http://www.prnewswire.com/news-releases/omega-3-supplements-show-promise-in-alleviating-depression-111503984.html MIAMI, Dec. 8, 2010 /PRNewswire-USNewswire/ -- A new analysis of the effects of omega-3 essential fatty acids offers the hope of enhanced treatment options for tens of millions of people with depression. Two critical omega-3 essential fatty acids available from certain food or nutritional supplements but not manufactured by the bodyEicosapentenoic acid (EPA) and docosahexaenoic (DHA) play a role in optimal brain functioning and have antidepressant benefits that have not been fully recognized. The results were presented today at the annual meeting of the American College of Neuropsychopharmacology. In a meta-analysis of 15 randomized, double-blind, placebo-controlled studies, researchers from the University of Illinois at Chicago, led by John M. Davis, M.D., research professor at the University of Illinois at Chicago and ACNP member, found that patients taking omega-3 with either EPA or a combination of EPA and DHA experienced clear antidepressant benefits. However, across studies, patients taking the pure DHA form of omega-3 saw no antidepressant effect. "Our analysis clarifies the precise type of omega-3 fatty acid that is effective for people with depression and explains why previous findings have been contradictory," said Davis. "The EPA predominant formulation is necessary for the therapeutic action to occur. The DHA predominant formulation does not have antidepressant efficacy." While scientists noted that omega-3 produces beneficial effects in patients with depression, EPA does not improve mood in people who are not depressed. In several studies, people without depression experienced no difference in mood as a result of omega-3 consumption. In another study Davis and his team found that women with inadequate omega-3 intake were more likely to experience depression during and after pregnancy than women with adequate omega-3 in their diets. "The findings are unambiguous," said Davis. "Omega-3 fatty acids have antidepressant properties, and this effect is ready to be tested in a large study to establish the dose range and to pave the way for FDA approval. In the meantime, omega-3 fatty acids containing EPA could be useful to augment effects of antidepressant medications. However, scientists caution that patients should always talk with their mental health professional before taking omega-3 fatty acids to alleviate symptoms of depression." Approximately 20.9 million American adults suffer from mood disorders, including depression, the world's fourth leading cause of morbidity and death. SOURCE American College of Neuropsychopharmacology

I think out of 69 views you have one response so far because this is an emotional thing for all of us. As anyone on here sees it, their child is proof alone that PANDAS exists. A lot have been told by some doctor at some time that it doesn't and it causes more stress and anger. Why do some say it doesn't it exist? I think the answer varies. For some, it just not what they learned in med school and they are set in their ways. Some don't want to admit it exists since they don't want to treat. Some will say it doesn't exist because in their opinion there wasn't enough research to fully prove it. However, the last reason is changing. More research has been done including the Columbia mouse study and the Tel Aviv study. With the upcoming NIMH IVIG study that locks it in more that professionals should stop adding the clause that it may not exist. Then there are treating doctors that have seen our kids get well with antibiotics, steroids, IVIG,and PEX. Collectively,it's getting to the point...how can one deny it exists? As for an autoimmune reaction exclusive to strep, well, it's not. Other things can cause what we on here may call "PANDAS like" reactions. That is PITAND. That needs to get more notice too and it will. In the upcoming months, the NIMH (National Institute of Health) is suppose to be releasing a white paper. This paper will hopefully put to an end a lot of the contoversy. From what many have said, it will include a name change as well. As for what it will say, we'll have to wait and see. To quote The Immunobiology of Tourette’s Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, and Related Disorders: A Way Forward (Tanya K. Murphy, M.D.,1 Roger Kurlan, M.D.,2 and James Leckman, M.D.3).... "It is time for the National Institutes of Health, in combination with advocacy and professional organizations, to convene a panel of experts not to debate the current data, but to chart a way forward. "

Speaking of ancestry, here's some threads from awhile back... Mediterranean heritage? Italian, Jewish, etc http://www.latitudes.org/forums/index.php?showtopic=6654&hl=poland Do any of you have Anglo-Saxon Genes? http://www.latitudes.org/forums/index.php?showtopic=7073&st=0&p=56815&fromsearch=1entry56815 As for the older post about Dr Schulman, this was it... http://www.latitudes.org/forums/index.php?showtopic=9797&st=0&p=82347&fromsearch=1entry82347

Alyssa, doctors won't check for immune deficiencies in an infant that is healthy. They just automatically give the vaccine. Also, not all PANDAS kids are immune deficient. Also, I forgot to add that my son never had pneumonia....any kind.

Here is a link that was put together to see how OCD has manifested in PANDAS kids... Signs of OCD in a young child http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

That question was once asked on here....if there were any unvaccinated PANDAS kids. I think only one person said they had an unvaccinated PANDAS child, but I can't remember if the mother received the flu vaccine wile pregnant. Perhaps if that person is still reading the forum, they will answer along with any others with unvaccinated kids. I wonder when kids have such a close onset of first known PANDAS symptoms to a vaccination if they had an underlying infection or a previous undetected mild issues before and the vaccine just sent the immune system over the top. Also, with the FluMist, I think there is an increase of people having sinus infections a few weeks after that. So, who knows in that instance, the vaccine could have laid a foundation for the infection that caused the onset. Lots of maybes and what ifs.Which came first....

There are parents on here who have noticed a connection to a vaccination (not necessarily Prevnar) and the onset of their child's first PANDAS PITAND exacerbation. So, you won't know if it will do the damage until the damage is done. My son had the whole round of Prevar vaccinations starting as an infant (he was born in 2003). He was finished with them before he ever had his first strep infection (2008). As a baby he may have had one ear infection, but that's it. He was not a child who was often ill.

Sorry, but it sounds like PANDAS. My son did the same. We were constantly asked if we washed our hands after doing things. If he even thought we touched our face or anything, he'd freak and tell us to wash our hands.Along with hand washing, he would walk with closed fists, refused to holds hands (had to hold his wrist), wipe his hands on his pants after touching something (this became such an instinct to him he didn't even know he did this), and he would use a long sleeve shirt as a sort of glove to pick things up. If you look close, you may see even more signs of germ/dirt fear.

My PANDAS son (actually all 3 of my kids) received the whole round of the original Prevnar vaccine (not the new Prevnar 13). Anyway, don't vaccines work by creating antibodies? Antibodies are what starts the onset of PANDAS, not the actual infection. That's why I am scared if they ever start giving a strep vaccine.

Onset was on my son's 5th birthday. Diagnosed 2 weeks later. He's now 7.

You could always "ask" her in a round about way, "So, I read your paper '....A Way Forward'. I really enjoyed reading it and it got a lot of positive feedback from the PANDAS community. It's nice to see these things going to print and hopefully leading up to the actual WHITE PAPER". Then you pause and see her reaction:)

How I miss co-payments instead of co-insurance!

Well, the head of Infectious Disease at our local Children's Hopsital once told one of my son's ex-doctors that amoxicillin kills strep...period

Would you be eligible for the NIMH study?

Here's a website to find one by you http://www.iacprx.org/site/PageServer?pagename=home_page I suggest calling ahead for pricing. I found one 5 minutes from me and was excited since I wanted dye free antibiotics. I called ahead and it was expensive. They also explained that they do not bill insurance (not sure if all are like that). You pay the full amount and submit it to insurance yourself. Your doctor will also have to write a separate script specifying "dye free". Due to the huge cost difference, we decided to just stay at Target and have him take the red dye. My son does not have a sensitivity to red dye, but I just don't like giving it if I can avoid it.

You can also look into if your job offers a Health Savings Account. This money is taken out of your check (you determine the amount and it can be changed) on a pre tax basis and is to be used on doctor visits, prescriptions. In 2011, rules will be changing for HSA's. You will no longer be able to use them for OTC medications like Ibuprofen. Also, if you do not use all your funds in that year, the money does NOT roll over. So, if you have a HSA this year, make sure you maxed it out! With my husband's job, because it is a very small company, his employer has to contribute to his HSA.

Yes! Throat cultures are very important. If you're already at the office, it's only like 15 more dollars to get the culture done (I read all bills completely since I was once charged wrong)....so worth it! With my insurance, I do pay all that stuff myself until I reach my high deductible, but if I'm already paying over $100 for a dr appt, I get the culture too. For a follow up strep test, you could ask if they offer nurse appts...those are cheaper and you're in and out faster. Investing in a box of rapid tests at home is a good idea too. For those stressful weekends when you question strep but don't want to go the office or ER. The rapids aren't that expensive either.

This is a thread I thought about writing for awhile. This thread is for those of you on the forum who have a PANDAS/PITAND child but simply do not have the financial resources to travel or dish out upfront costs of some specialists and other things mentioned on here. Often on here people give the perfect advice of skipping local doctors and going straight to a PANDAS specialist. Even though I agree this is the ideal thing to do, the reality is some people simply cannot. I want all of you who are in that situation to know that YOU ARE NOT A BAD PARENT because you cannot save up for that appointment. Some may not fully understand what it is like to truly scrape by and not be able to save up even for an appointment that your child may need or not have anyone to even ask for help or a loan. No one will ever judge you if you are in that predicament. I know it does not mean you love your child any less. I know how hard it is to watch your child suffer and to think that it may be due to money that they may suffer longer than needed. That you read about tests to be done, supplements to buy, prescriptions to pay for and you just cannot see where the money will come from. In regards to doctors, even if you cannot travel to see a specialist, do not feel you are not worthy of help. Still seek out local help. If your pediatrician is not helping, make an appointment with a local immunologist, rheumatologist, ENT. You can try to see one in your county. It does not have to be THE county hospital, but at least one you live in since you need to live in the same county as the hospital to qualify for financial assistance. By doing this, you can apply for financial aid to help with medical costs. You can apply for financial aid even if you have insurance. Also, you should not have to pay for the visit (except for any co-payments) at the time of the visit. Try to see a different pediatrician. You can see a new pediatrician without transferring all your files if you are not going to get vaccinations. Files do not have to transferred for an initial visit. Also, use the phone! I ruled out many offices simply by how the phone call went. Cunningham test...Even though, to my knowledge, they are not currently sending out new kits, I want to touch base on this. I know this test is just impossible for some to run due to cost. Again, don’t feel your child will not get help if it is not done. Yes, the ideal is to get it done, but if it’s the matter of choosing between the test and feeding the kids for a few weeks…well, you get the idea. Supplements...So many get listed on here but it’s discouraging when you go to the store and see the price of some of these. Your child could benefit from at least a multivitamin, Omega 3’s and a probiotic. A good website to price compare is www.vitacost.com. I was pleasantly surprised by their prices. Also, rediscover your local library. Yes, that sentence sounds corny, but it really is a great resource. Most libraries have it that you can put books on hold and be contacted when they arrive, should they be out of a copy when you want it. Here’s a list of books to help with OCD that was once posted by Meg’s Mom http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&fromsearch=1entry52242 I do not know of any organizations that could help with medical bills. If anyone has any info on such a thing, please post. That could be very helpful for some parents. Please feel free to post any other suggestions!

Yes. Strep can occur in the throat, gut, sinuses, ear infections, anal, vaginal, on the skin. Sinus infections can be very hard to detect. Sometimes simply looking in the nose (like a ped does) would not detect it. For some, the only way the saw it was through a MRI. Also, even if titers are not raised, it doe NOT rule out infection. Have you seen seen the flowchart for some other suggestions? PANDAS Flowchart http://www.latitudes.org/forums/index.php?showtopic=6688&hl=