Kayanne

The key thing to keep in mind, is that anything ordered by a doctor that results in additonal costs is deductible as a medical expense. So, if you are trying a GFCF diet without a doctor's recommendations, it doesn't qualify. Another general example would be if your children's allergist said to get dustmite allergy covers for their bedding, those covers are deductible. If your children's allergist said you need to replace carpeting with hardwood floors save your reciepts and talk to a CPA (or better yet, talk to your CPA before you make that decision). Larger expenses that may affect the value of your home are treated differently than a current year tax expense. http://www.irs.gov/publications/p502/ar02.html

My daughter's Cunningham Panel was also done about 4 months from recovery, and her results were normal. Her PANDAS doc took a look at them and asked if it was taken when she was not having symptoms. From that, I would assume that if you're not in a flare, the results will probably be normal.

Steroids are tapered if you use them longer than approximately 7 days--your body stops making it's own cortisol and relies on the medication. You have to slowly drop the dose to coax your adrenal glands into producing it again. A sudden stop after 7 days at a full dose may cause severe steroid withdrawl. That is the real difference between a burst and a taper. My daughter has always had month-long tapers that brought her back to us with sustained results. We never saw any improvement until close to end of the month. At least for her, it seems the autoimmune reaction needed something longer than a burst.

I'm so sorry that IVIG didn't help. I know that Duke University offers stronger immune modulating treatments for AE. Have you explored that route?

I am so grateful that my daughter's PANDAS happened at the end of a very successful year in kindergarten. If it had happened just 3 years prior, she would have gotten an autism diagnosis. She regressed in a matter of weeks--high functioning verbal and congnitive skills gone! You probably remember my daughter's story, I know I remember when you started posting. I hope your children are now symptom free! I pray that for all of our children! I also know that vaccines play no part in my daughter's PANDAS. My sister has AS and has tested positive for the HLA B27 gene. She swears by the CVS brand of Curcurmin and getting her anemia under control by taking iron has made a huge difference for her. I also have family history of RF and complications to strep. Ariel, is there a lot of ADHD (inattentive type) in your family? There is a lot in mine...Just curious. Thanks

Perhaps you can politely ask the hospital administrators to recommend a doctor? If you have insurance approval, I find it hard to believe that the hospial would want to turn you away. I think your Mother (of course) would know if this is a viable option or not. Good Luck.

Hi Ken, I'm sorry that you've been suffering. When my DD was diagnosed with PANDAS in 2009, I remember being very concerned that it seemed so casual - without any real tests to back it up. A very knowledgable PANDAS mom asked me one question; "Is your daughter a completely different child than she was 2 months ago?" The answer was "yes". At a minimum, if your doctor didn't do this when you first developed OCD, I would suggest a basic panel of health markers such as a CBC/thyroid panel and others (your doc will know). That's usually a jumping ground to see if anything else needs to be followed up. This is a clinical diagnosis -- just like any psychiatric disorder -- it is symptoms and their context. For PANS/PANDAS it is a whole host of neuropsychiatric symptoms in the context of infections, that remits when infections are addressed and/or immune modulation treatments are given. It's a very similar treatment protocol to a psychiatric disorder -- pick a treatment based on symptoms/history and see if the patient responds. Other infections that may trigger this (mycoplasma, lyme, EBV, flu) should be kept in mind, if you're not responding to treatment for strep. Dr. Cunningham has developed a panel of tests that look for neuronal autoantibodies that may be the culprits in this disorder. However, it's not a definitive test to rule PANS/PANDAS in or out. It's more a snapshot of what may be happening; if the antibodies are elevated, it is just one more piece of the puzzle. Her website is: http://www.moleculera.com. Antibiotics do not interfere with her tests, but steroids, IVIG and Plasmapheresis do. If you pursue lyme testing, I think you need to stop antibiotics, but I do not have any experience with Lyme. I think a call to Dr. Tanya Murphy's office would be helpful. Just ask if she only sees children...but I think the term "Pediatric" refers to upwards of 18 years old. Ask for a recommendation of another doctor if she can't see you--but you seem to have a good psychiatrist right now. Good Luck.

This site has a lot of links about Hemp. I'm sorry I don't have time to go through them to see what is there but there may be some information that is helpful. I've been using bronner's soap, and I love it. https://www.drbronner.com/impact/activism/hemp/ I'm also so glad everyone is seeing results. Please keep us posted. We're about ready to try an SSRI for the underlying anxiety, but I might consider this first.

I have no background in biology, so I can't attest to the accuracy of these wikipedia entries. But, I'm pretty sure rapid strep tests are only testing for Group A Beta-Hemolytic Strep (GABS). The bacteria that causes strep throat (RF & SC) is strep pygoenes and falls under this category. The strep mutans that causes cavities is in the Group A category of viridans. So if your at-home test is positive, it's probably positive for GABS. Here are the wikipedia entries: Streptococcus - http://en.wikipedia.org/wiki/Streptococcus Rapid strep test - http://en.wikipedia.org/wiki/Rapid_strep_test My children's ped always swabs just the back of the throat, I'm going to let him know to try the inside of the cheeks and teeth.

So a swab to the back of the throat is negative, but swabs on other parts of the mouth are positive? Do you mind elaborating specifically where in the mouth? That's very interesting. Thanks for sharing.

Doctor's Q&A Breakfast at Northeast PANS/PANDAS conference: http:// www.youtube.com/watch?v=XhKbxc2c_m0 Your have to delete the space that I inserted before the www because if I didn't add it, then it imbedded the video, and I think you just want copies of links.

I was told by my daughter's gastro doc that if I give her motrin or prednisone, to automatically give acid suppression (zantac or prilosec) because of the greater chance of damage to the stomach. But I want to point out that our working diagnosis for her is acid reflux. I was also told the only reason for not combining them is the risks to the stomach get worse, and it's not because taking both medications at the same time give a bad reaction. So, if you daugter really needs pain relief, in this situation consult her doctor. I personally would never combine them unless a doctor told me it was ok, but it doesn't hurt to ask - throwing in some zantac may be an option too. Motrin, in blocking the prostaglandins, causes the amount of mucosal lining in the stomach and intestines to be decreased--that is why it can cause ulceration.

I use tyrosine a lot. However, I believe it needs to be balanced with Tryptophan or 5htp because when I forget to add that into the mix, then I get very impatient and I can't handle stress nearly as well...I begin to worry about things that normally don't bother me. Here is a site that claims that taking tyrosine will deplete your serotonin and taking 5htp will deplete your dopamine. I don't understand a lot about it, but I'm beginning to believe that a balanced amino acid supplement is probably the safest thing to do. http://www.neurosciencemyths.com/blood_brain_barrier.htm

We knew something was wrong by mid-April, she started prednisone in the beginning of June. By July 4th week she was about 98% recovered with the majority of the recovery happening that last week. It took until Sept for her to shed some minor OCD, but it took about a year for her creativity to return.

My DD's story is similar to your Son's. She was also diagnosed early and treated with a month of steriods by Dr. L. She didn't have noticable tics but she had a severe behavior and cognitive regression. We saw improvements with the steroids, but it wasn't until the very end of the month that she really dramatically improved. Hang in there. I am eternally grateful she was treated early because we have been able to manage this mostly by steroid tapers. This was about 5 years ago. Now she is going to be 11 yrs old and is doing so well! I won't say she's 100% because we believe she will always have a low level of anxiety, but she deals with it so well. She is the neatest kid, and I'm so grateful that I've been given the privilege to be her mother.

Tylenol also has a small threshold in which overuse can damage the liver. While, I knew you shouldn't take more than the recommended dosages, I was surprised to find out just how easy it is to damage your liver using it. Here is a great interview and article about it: http://www.thisamericanlife.org/radio-archives/episode/505/use-only-as-directed

Has your son ever had his thyroid and cortisol levels tested?

I'm sorry your in such a rough spot. I've been reading about benzos and withdrawing because DD was taking clonzapam twice a day for a few weeks in the summer. If I'm reading this correctly, Clavulanate acid effects the brain at the GABA receptors like a benzo might, then you don't want to stop suddenly, a slow taper would be better. We took my daughter off of antibiotics, they weren't protecting her from strep, and they may have been contributing to her stomach issues. (((hugs)))

Hello. I'm sorry that you are here, but you've found a great place with many people who are willing to share. It's been a while since I've posted on a regular basis, recently I've been checking in a couple of times a day. However, I can relate to your story a lot because my daughter was excelling academiclly and socially when she changed suddenly at age 6. I don't think it's the younger children who do better with PANS/PANDAS. I think it may seem that way because early intervention is vital, and children who are diagnosed at earlier ages are getting treatment sooner. Three times since 2009, my daughter has fully responded to monthly tapers of prednisone, and we have really only used antibiotics as prophylaxis or to treat actual strep (or very strongly suspected strep). She was diagnosed and treated within 2 months of our first noticing that something was wrong. We are currently in an exercerbation and she is on her 4th treatment of prednisone. During her second exercerbation, I was told by her PANDAS doc that since she was diagnosed so early, we will probably be able to manage this with prednisone. I've come to believe that for us, PANDAS, is managable. I realize that for many on these forums, their journey has been much more difficult. However, there are many recovered children whose parents don't come on these boards much at all. Most PANS/PANDAS doctors will say that the long-term outcome is very good. As far as bloodwork is concerned, if you can confirm a triggering infection, then you will have a better chance at tailoring the correct treatment to eradicate that infection (if possible). How much testing and if you should get IVIG for your child are difficult decisions. They are also very individual and dependant on the uniqueness of your family situation. It's very very hard being in the trenches right now, especially if it's your first experience with this. Having your child change so dramatically is difficult, but so many of us have seen our children come back, more than once. Good Luck ((hugs))

Thanks for this tip. I ordered 2 bottles. I'm sure the whole family will like it. I also used to have her swish with plain, unsweetend yougurt at night after she brushed her teeth when she would get dry lips in the summer or small cracks in the sides - I assumed it was yeast. We stopped antibiotics for my daughter in December because she was having stomach issues. I was considering getting some xylitol spray or gum but recently, I've had horrid stomach cramps from sugar alcohols and I guess I'm afraid she may react too because it's not an uncommon digestive irritant.

lfran...i've been very suspious of hormones for a bit now...going crazy trying to understand the whole hypothalamus-pitutary-axis and it's role in autoimunity...I'm ready to give it up for my sanity (that's just my low mood today)...it's almost pointless without the labs to prove a hormone imbalance. Neuroendocrinology is a real field of research, but not of clinical treatment. Google gives me one doctor in NYC. Our family is in a stressful rut, but we're not yet ready to jump to a different doctor...getting close, though. My daughter's PANDAS has been managed with monthly prednisone tapers. They have brought her back to full remission three times. In March, she had strep with NO obvious symptoms. Two months later our house became ill with a gastrointestinal virus, and two weeks after that DDs PANDAS has come back. For various reasons we had to hold off treating, but we are starting her on15 days of pred tomorrow. Jag10, depending on who you talk to, those strep titers could really not be that significant. A school-aged child could be expected to have elevated titers all the time because of the constant exposure. I'm pretty sure it's been documented that some people's titers drop very slowly, and that is one of the reasons why more than one test is recommended to see the trend of the titer. Also, I wanted to mention a book that I'm reading: "Safe Uses of Cortisol" by William McK.Jefferies. It's written by an endocrinologist who was treating patients with cortisol for adrenal issues when steroids first were being used in medicine. He used "physiologic doses" (the amount your body produces naturally) in his patients for years-without the side effects that were being seen in treatment doses. He reports anecdotally of his patient's cases thst also saw remission in other heath issues: RF, asthma, severe food allergies and ovarian disfunction on this dose of cortisol, with none of the steroid side effects. Anyway, it's a moot point until a doctor would actually be willing to try it...or until a double blind placebo controlled study can show (and be replicated) that physiological doses of cortisol work safely for autoimmunity. I'm not holding my breath, I bet there's more profit in IVIG.

When you say daughter is completely neurotypical on steroids, does she take them regularly? Can you elaborate on what her steroid treatment has been? Thank you.

There is some information that vitamin D needs to be balanced by vitamins A and K: http://blog.cholesterol-and-health.com/2009/04/tufts-university-confirms-that-vitamin.html I also came across this, but didn't read it yet: New Evidence of Synergy Between Vitamins A and D: Protection Against Autoimmune Diseases: http://www.westonaprice.org/blogs/cmasterjohn/2012/01/22/new-evidence-of-synergy-between-vitamins-a-and-d-protection-against-autoimmune-diseases/

I have been reading up about the gut so much recently. All of those neurotransmitters are used by the nerves that control our digestion (enteric nervous system). It is so fascinitng and mind boggling to think that our digestive tract is as sophisticated as our brains, and that is why there is so much cross-over between stomach problems and "psychiatic" problems.

Sending Prayers for you son and whole family. I hope he makes a full recovery!