SurfMom

An excellent read on the microbiome of our children. From the New York Times: http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?src=dayp&_r=0

Yes, that is DD's protocol. She will be on month four of 1 g. in a few weeks. She deteriorated severely after the first treatment, has bottomed out and now making slow gains. I am not convinced that her decline or her improvement are tied to IVIG at this point.

I forced myself to check in and have not been posting because I feel like such a Debbie Downer. My DD 15, who tells me too she hates me....when she rarely speaks......became so OCD that we had to put her on a feeding tube as she wouldn't even swallow her own saliva. She is negative, sullen and every single task is a battle...and she is functioning so lowly that she has been out of school since December. I hardly remember what her voice and laughter sound like anymore. The last time she said a single nice sentence was September. September! Right now, I don't see a great deal of hope. We have been through every diagnostic test in the universe, have had three lengthy medical stays and have done everything from IVIG (now monthly) to Vitamin D....and still she is cranking out antibodies that are clearly cross-reacting. I am worn out (she is up in the night doing crazy things), research and doctor expended, weary from being DD's cheerleader trying to keep her perked up and I desperately miss my happy-go-lucky, very bright, athletic daughter, The last time I had a conversation with someone other than my immediate family was at the grocery store two weeks ago, and I can't even run or take a shower. The last time I did, DD tried to cook something in a glass dish on the gas cooktop. It is like having a mean two-year-old in a teenager's body in the house day and night. So I feel your frustration, have a boatload of it myself and wish you some peace and a break. I am determined to see this through, get her back and have a life...though I have stopped kidding myself and see that there are no miracles, she is not going to wake up one day snapped out of this. Funny, but I told my husband that I clearly do not have an addictive personality or I would have been a valium popping alcoholic by now. Anyhow, we have still have a long journey in stormy weather in a leaky boat. Someone pass me a bucket and a bigger oar and I'll do the same. All good things, Exhausted !!!

T, she is on a slow taper of prednisone, a monthly 1gm/kg of IVIG, Sertraline for affect concerns (irritable and unhappy which is 180 degrees from norma) and a prophylactic dose of azythromycin. We are currently considering Cellcept as her ASO continues to climb, now at over 600. She tests negative for absolutely everything but the ASO and Dnase titers.

That's great news, Bigmighty. Thank you for sharing! So happy for your son and your family!

Oh, t, you have no idea how good this sounds. I am in the hospital right now with DD15 who is getting another IVIG and other treatments. The reality has hit that as her twin brother is finishing the year, and her schoolmates are shopping for pretty dresses, she is here with an IV line swollen-faced and rashy, out-of-touch and out of a year of school. I hope your son has the time of his life. His fun gives me a lot of hope that I'll be writing a similarly happy post in a couple of years. Thank you!

We are about to add CellCept to my daughter's course of treatment. She has rheumatic symptoms, OCD, cognitive issues and is nonverbal. Her ASO titers are climbing even on abx. She has had 4 IVIGs and is now on a very slow prednisone taper, currently at 30mg. I would appreciate hearing from you all about whether or not you have seen improvements, side effect, etc. Thanks!

Five months and counting, abx, prednisone, monthly IVIG.

For some children, whose PANDAS is related to the T cells matured in the Thymus, their exacerbations my lessen or resolve when the Thymus begins to shut down and turn into adipose tissue at puberty. For other children, onset can begin in teens if there are other antibodies/pathogens at the root of the cause. Technically, pediatric means anything before final maturity....height, brain development, etc. You will find that it depends on whom you talk to.

My daughter started her PANDAS onset at 15. She is a bundle of symptoms packed into her petite frame. That said, the ONE thing we have noticed, by their noticeable absence, is that she has no obvious mood swings with her periods even though has been in full exacerbation for five months.

Yes, DD had dilated pupils before any medications were introduced. We too saw in in combination with OCD and a heightened emotional state.

I am so sorry! As you know DD became so averse to pills and then swallowing that she ended up with G-tube. As such, this is a huge issue at this house. The first thing you have to do is find out if this is purely a control issue or if there is some OCD involved (pills are poison, contaminated, do not like the taste/texture.) We have thrown all the traditional rules out the window and gone to pure bribery and rewards. I bought a pill crusher and have some meds put in liquid form so we can hide them if necessary. I also explain ever single medication, what it is for and why she has to take it. I think that during office visits it is very important for the physician to talk DIRECTLY to your son about the prescriptions since it is his treatment and the pills are really going from the doctor to your son....not from you to your son which a lot of teens balk at. One of the things you can do is make him understand that he WILL get his medications and that an NG (nasal) or G(stomach) tube are not out of the question and that you know one family - us - who had to resort to this. To make sure that it was not a control issue with our daughter and confirm that it was OCD, we had her doctor explain the procedure and show her pictures. We even resorted to showing her videos of the insertion and placement of the tubes. That she STILL refused to swallow confirmed out understanding that in our case, it was not a control issue but an absolute OCD aversion problem. So hoping this helps, I know it is really tough and sorry for any typos..huge rush tonight.

Well done, and thank you for sharing this for other families in the region!

While it is important to be assessing your child for neuropsychiatric issues, please make sure your pediatrician is ruling the other half -physiological causes like strep or lyme. Really, the most thorough way to do that is to ask for a referral for a pediatric neurologist who will be much more extensive diagnostically.

Thank you for this information. I am bumping it to ensure it is on everyone's radar.

We too were told that the easiest path was to put the dogs on an abx, course. We put all four of them on a full course of amoxicillin. Best thing about it- it cured their dog breath!

Low Vitamin D is not necessarily a cause....but it is definitely indicative of having inflammation like the autoimmune encephalitis associated with PANDAS.

Have you ruled out tuberculosis? It's unlikely but sure worth checking if he hasn't been tested. Best wishes. DD15 has very similar symptoms and we are still looking for a treatment plan that works.

Update on DD15, first illness ever strep March 2012, first PANDAS exacerbation in October, fast and full recovery with course of amoxicillin, second exacerbation Nov. 2012 to now. Intensive and thorough inpatient diagnostics physiological and psychiatric at Duke, confirmed Autoimmune with only high DNAse and ASO...after 24 EEGs full body PET scan, lumbar punctures, MRIs, extensive antibody testing..and so on. 2 g. IVIG and pred. We are just out of the hospital again, 2. 5 weeks after she went in for severe OCD refusing to swallow...anything...food...water...meds. We went from IV to a nasal feeding tube to now a G tube put in last week. Along with the aversion to swallowing, now an aversion to speaking. Mood swings that could be med. induced. High prednisone working towards a taper. She is essentially functioning like a 2 y.o. needing help with everything. On Valentine's Day in the early hours, she popped out briefly...lucid and conversant for the first time in months...we still know she is "in there". She is now on pred, azythromycin, Zoloft, Ativan and finally we had her first near normal ASO titer yesterday at 240. Just an update on her treatment, hoping to give guidance and support for others. We have a long journey ahead...with the primary goal of getting her to eat and drink again. Of all the possible OCD behaviors, this one is extraordinarily difficult. Best wishes to everyone. Will check back soon. My only advise continues to be to get a full physiological exam for your child if you cannot get control of the exacerbations.

T Anna, DD5 is expressing rudeness correlating to her prednisone.

DD15 is 5 days post IVIG. We too are seeing some decline and a swallowing OCD issue that is completely new. I just finished reading a med journal that specifically addressed the expectation that some symptoms may reemerge before they wane in reverse order of onset. The symptoms you are otherwise describing are certainly hers including irritability. I will keep you posted and the best of wishes. As much as I went into this treatment educated, measured and determined not to be too anxious about the recovery, I feel like I am watching grass grow.

My daughter, 15, also had the BCG and she too was adopted from Russia. She has a diagnosis of autoimmune encephalitis. Always looking for an answer though. Thanks for sharing!

As some of you know, DD15 had a her first exacerbation that started around Halloween, bounced back beautifully with a high dose amoxicillin course, and then started an exacerbation at the end of November that as of two weeks ago still had not broken. Took her to Rothman to see a non-plussed ped psych who put us on yet another antibiotic and sent us home. We called again as she deteriorated and we tried another (call us back in two weeks, blah, blah, blah...). A call to the nurse told us that no only is Remfer leaving (no great loss) but Dr. M is not seeing new patients. With a gut instinct that this was more than PANDAS and worried about her still deteriorating state, we pressed and got DD15 into her ped, neuro on the 23rd. Very concerned about her increasing catatonia, flat effect and chorea (for the first time) with tics, she made calls to Duke where she did her residency and we were seen there last Monday. This recommendation came with the understanding that no nearby hospitals are autoimmune centers with the ability to do IVIG if necessary. A quick exam and the ped. neuro and ped, rheumatologist had her admitted and DD had a grueling three days of tests including PET scan, echocardiogram, a lumbar puncture dozens of blood tests (for pathogens, allergies, toxins, cbc, anitboidies, viruses, immunoglobulin, etc.) ultrasound for possible teratomas, and antibody tests sent to Mayo. In the thoroughness of her diagnosis we have seen neurology, psychiatry, rheumatology, a dietician, speech therapy, physical therapy and immunology. By Thursday all the major concerns had been eliminated and we were looking at a diagnosis of autoimmune encephalitis (a broad category that would include PANDAS) with a recommendation for steroids and IVIG last Thurs the 31st with a second round of pred yesterday. The prep for the IVIG left her with no side effects and we already have a date for her second IVIG in late Feb. We are now in a hotel near the hospital waiting for her to have some neuropsych testing before we leave town on Monday and we already have a date for her next IVIG at the end of February. I realize that we had the good fortune of having a neurologist who had an excellent reputation as a resident at Duke where they have recently started an autoimmune center but we are stunned at how fast the diagnostic and treatment phases have taken place. What we wish we had done and what we learned: 1. Don't hesitate to move beyond a pediatrician and get seen by a pediatric neurologist early on. 2. If your child does not improve with antibiotics soon like ours did, do not waste months moving from one desperate course of antibiotics to another for months and get on with step one. This is, after all...her BRAIN, joints and possibly heart. Unfortunately, for us and others, the symptoms could also be degenerative conditions, cancer or other causes in which time means everything. 3. Do not rest with a diagnosis with PANDAS. Step back and consider ruling out every other possible condition 4. Get your child to an autoimmune center like Mayo or Duke. There are several others around the country. 5. In marriage with four above, do NOT just seek out a ped neuropsychiatry program like USF and Rothman without a complete physiological workup. Deal with the psychiatry AND the physiology of what is going on. These two are tied together but they do not stand alone. 6. Be educated when you go in but do not be married to any name of the diagnosis. The reality is that every single autoimmune presentation and cause can be unique there are hundred and hundreds of antibodies and there are more being discovered every day. Treatments like IVIG cover a broad spectrum of diseases. Again, there could also be co-morbidity. 7. Be educated on your insurance and if your child is as sick as mine was/is you may want to push for admission to speed diagnosis and treatment if your coverage will allow it. DD15 is already showing some signs of improvement and now after a grueling week she is sleeping off the effects of the diagnostics and treatment in one WEEK. We are not going to be Pollyanna-ish about her recovery and how long the pred and IVIG will hold, but we feel like we have a direction, some home and an gratitude for the speed in which she was diagnosed and treated. For the first time in almost three months yesterday, I saw my daughter SMILE with nary a tic in sight. If you have questions, fire them off or PM. I am still out of town as we have neurpsych testing and travel home, but I will get to all of them.

How about this? http://www.foxnews.com/health/2012/06/04/foods-for-children-with-autism/ On a side note, DD15 and I watched "Hungry for Change" last night on streaming Netflix, though it is more about adult weight loss, it really compelling and does a very good job of tying food choices with feeling great. Moms will really like it. We are an ovo-lacto vegetarian family (I have been one for 25 years), so let me know if I can help. We have been through the school lunch, fast and junk food challenges (even DS15 who has to deal with "real men eat meat" in a scouting, hunting, fishing context) so let me know if I can help. I am a true believer in giving kids a shopping basket and letting them choose some of their own veggies and fruit, growing their own gardens (I am a believer that will eat ANYTHING they grow on their own) and cooking/preparing their own foods as early as possible. Hope it helps.