lovemylittleguy

I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: 

With one of the most profound and difficult to treat cases to  ever treat - my daughter is staring community college in the spring!
You name the symptom and she has exhibited it - to name a few... complex tics,  anorexia, bed wetting, mutism, depression, OCD, sleep disorders,  a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia.
She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab.
We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her.
It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT.
I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services)  in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back.
Hang in there....it will get better... Here is the 2015 post. 
My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
 
1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
 
2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 
 
3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 
 
4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 
  5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 
 
6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 
7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 
8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 
9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 
10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 
12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.  
After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. 
Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. 
 

I think this is an excellent summary within the bigger picture of AE. Includes interesting discussion of the function of CamKII and the rest of the Cunningham panel. See pp. 54-65.
 
Autoimmune encephalitis History & current knowledge Short compendium Version 5.8, April 2016
By Finn E. Somnier, M.D., D.Sc. (Med.), copyright ® Department of Autoimmunology and Biomarkers, Statens Serum Institut, Copenhagen, Denmark Adding, I see that pandasnetwork.org already has a related article from 2013: http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf

I sent you a PM Canadianmom, from a post I saw earlier from you. Also sent you name of Dr. in Ontario.
 
Janice

Dr Wilson has been a wonderful help to us and to many other pandas/pans families I am in touch with in BC and Praries online groups. I mentioned this a few weeks back (Canadianmom) and you thought perhaps she couldn't help because she's in BC, but she does indeed work with families around the country. i am so grateful for her...

MyLightHouse - I highly encourage you to get Stephen Buhner's book on treating mycoplasma http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_sc_1?ie=UTF8&qid=1459425492&sr=8-1-spell&keywords=bu+bartonella
 
He explains why it can be so hard to eradicate and offers great herbal options that don't destroy gut bacteria. I'm a Pans veteran due to my oldest child's issues 8 yrs ago, but now my younger child is Pans as well. Because she's allergic to most antibiotics, I've been turning to herbs - with much success. Herbs generally have strong tastes, but we use tinctures and put them into empty gel capsules, and then my daughter swallows the capsules without tasting anything. (but you need to take the capsule quickly or the liquid tincture melts the capsule).
 
Johnsmom - I will say something "controversial" in that I've personally come to believe that auto-immune diseases are not cases where the immune system has become confused. I think the body is wiser that western medicine gives credit. I don't think the body is inclined to waste valuable resources like macrophages or to cause self-harm with inflammation without a good reason. Recent research has looked at cases of lupus where the primary organ being attacked was the GI system and they found that these cases went into "remission" with antibiotics. They found DNA of infectious bacteria in the gut and think the immune system was (correctly IMO) attacking that DNA as an invader. Whether the DNA was just remnants of past infection or from active infection or from a biofilm colony where DNA of multiple microbes (including self) co-mingle, the study didn't say. But my take away was that the immune system wasn't confused. It was doing what it's supposed to do - not attacking self but attacking an invader doctors hadn't previously identified. And abx helped get rid of that invader.
 
Now, I'm not sure if abx would be a good thing or a bad thing for colitis. But maybe herbs? Or maybe a stool test to look for bacterial infections or yeast? It's possible that the gut inflammation is a response to something that shouldn't be there. So herbal abx or antifungals (e.g. berberine or capryl) would support the immune system's efforts rather than suppressing it.
 
As I said, I realize this isn't a commonly held view and I don't mean to start any arguments. Absolutely support your child however you feel is best. Just tossing out a different perspective - as I know there have been times people challenged my thinking and a light bulb went off. Best of luck!

Could you PM me the name of the doctor on Ontario too please? There was no one 5 years ago. Thanks.

Hi there,
 
I am also a Canadian mom. It is difficult to find doctors who are familiar with PANDAS/PANS. Fortunately there is a naturopathic doctor in BC who specializes in these issues - Dr. Ayla Wilson. She is very well regarded and many families across Canada (including mine) are working with her. I'm aware that she attended a conference last year in Saskatchewan where the expert American doctors were also present (Dr. Swedo and Dr. Murphy). She has a facebook page called 'PANDAS treatment Canada', and also a website (just google her name). She does phone consultations and is probably your best and fastest bet in terms of an opinion on whether your daughter may have PANDAS. Hope you find some answers soon.

I've communicated with another parent who spoke with Dr. Brill (a psychiatrist) who told her she was no longer interested in PANDAS.
 
The only MD I know of in Ontario treating PANDAS/PANS is Dr. E in Chatham.

I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible.
 
But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top.
 
When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out.
 
The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him.
 
If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.

Thanks for the responses so far. Of course Lyme and co is in the back of my mind....the very back, I will admit. We have almost zero exposure to tick bites where we live (urban-ish Washington State), and he has never had any *classic* symptoms. That said, the naturopath wants to see how the next 3 months go with some consistent IVIG under our belts and if we are still playing the up and down seesaw then she will order a whole slew of tests that may determine underlying infections, including lyme, (yes igenex), various infections, even mold is on the list (we built our house 10 years ago...I can't think of where mold could be....though it is very wet here in the PNW).
 
The theory of his immune system being in overdrive makes sense to me....just need to find out why I suppose. For any of these tests we need to wait at least 6 weeks post IVIG so that we don't get any of those antibodies in the mix. We have not tested anyone in the house as carriers for strep....and I suppose we haven't done anything out of the ordinary to try to minimize his exposure to the real world post IVIG's either. We have never been instructed to do that - is there a protocol that we are missing here?
 
I would have so much more patience with it all if he would just get to school!! And honestly if he was able to do any amount of work here at home we could at least bridge the gap with some sort of academics aside from the newspaper, mad libs (these can get hard! who knew?) and random documentaries here and there. But for him, it isn't school as a place, or about the people....it is great and the people are great, and my kiddo is very well liked....but there is something cognitive going on that triggers anxiety around doing any "work"..... He is such an articulate and communicative kid and it is confusing for me (and him) to not be able to put a finger on why it is the work that causes him the angst. Can he not concentrate? Can he hear in the classroom okay? Can he see? All of the questions that may lead to some good information always lead back to the same place: which is a very sad and frustrated "I don't know"....it is just heart wrenching. None of our kids want to live this way.... Okay, now I am just venting!
 
Just so sick of it all...and I admit to being in a why me mode at the moment. All the *normal* chatter at drop off for my daughter, parents b*itching about the most inconsequential things (trust me, I wish it was me!). I really don't want any attention, but it does sting a little that most of the questions about DS have stopped - even from some of our very good friends - but I suppose I don't blame them. How many times for the same questions with the same sigh's and I don't knows can anyone take? That being said, how about a flippin' casserole or something??? I'd love a random greeting card to accompany all the medical mail that comes...??? It is all so isolating.
 
Thanks to all my fellow warriors....keep any advice or commiseration coming. You know what they say about misery....
 
Kristi

5 days no tantrums. Calm and happy. Dont want to jinx it but doc said if its going to work we would see results in a day or two.

Thank you SO MUCH for your replies! I ended up taking my son completely off Zoloft about a week ago. Within the last couple days he is finally nearly back to himself. He went from swear words hundreds of times a day to 1 bad word and a few not-so-great words today. This morning he went on and on for 10 minutes about how much he loves me!!??!! Last week he was literally pointing toy guns at me saying they were real and he was going to kill me, and talking about how my red shirt was because he hurt me and I had blood all over. Complete 100% incredible turnaround, a totally different child. I believe he had serotonin toxicity and SSRI's are something we should absolutely avoid.

He is currently on Augmentin, and before the Zoloft I did Omega-3 (but just a low dose, I think I will increase it), Probiotics, Zinc, Folate, and Dr Rob Keller Original Glutathione Formula. I had quit most of those things because I was worried about bad interactions with the Zoloft.

I want to find a homeopathic Dr in AZ to start going to. His diet is absolutely horrible - he has food neophobia since 10 months old and is terrified of trying most foods. He does like fruit, but mostly lives on protein bars.

I was at the medical day. I took some notes, but not a lot because they said that the slides would be available online. I have not been able to find them. I can send an email to find out and post a link if one exists. I focused mainly on what pertained to my own child's needs with my notes, but here is what I have:
 
Dr. Swedo in her presentation, did not seem to offer anything dramatically different than what she has said before. She said that striatal encephalitis was a medically accurate description of PANDAS and might get covered by insurance more easily. She said 440 was normal strep titers for a school aged child. She was all about PANDAS, did not use the term PANS often. I asked about this, and her response was that all of the research that had been done in the past was about PANDAS. For me personally, this is frustrating because they knew about other triggers way back when - hence PITAND. But I do love Dr. Swedo and her devotion to our children. She answered a question I had in private conversation. She said that a child should stay on abx for one year after being symptom free. For my DD, who has an immune deficiency and relatives on both sides with rheumatic fever, she said it might be wise to keep her on for very long, if not indefinitely.
 
Dr. Williams from Yale, and now Mass. General, spoke of higher rates of immune deficiency in PANS children, making them predisposed to autoimmune disorders. He said IGA levels go up nominally as children get older; however, in children with OCD, they do not.
 
Dr. Frankovich from Stanford spoke of immune problems - genetic history of autoimmune diseases and immune deficiencies in PANS childrens' families.
She also spoke about giving ibuprofen (or Naproxen) 2-4 X a day. Wean off and then if they are doing well, you can remove the it from the regimen. She expressed a need for more clinics like the one at Stanford.
 
Dr. Xiang spoke of sleep disturbances - night terrors, nightmares, not wanting to sleep alone, restless sleep, REM being disturbed.
 
Dr. Cooperstock spoke about antibiotics, but it seemed like he was not on the same page as most PANS doctors. He uses abx strictly for prevention of strep, whereas most docs seem to feel there is an immune modulating effect as well. I found his presentation did not offer anything new.
 
Someone asked the panel if allergies can cause OCD, and they all responded - yes. Quite a few parents asked very specific questions about their own children.
 
Even though neither Dr. Swedo or Dr. Williams would directly comment on the results of the IVIG study (coming VERY soon - they said), it seemed like it was extremely positive.
 
I'll crunch my brain and try to remember more.

If your daughter has tested positive for lyme I would investigate the possibility of coinfections.
 
DD13's PANS was caused by bartonella / babesia - the treatment of which resolved her PANS/PANDAS symptoms. Only a LLMD or LLND will realize that lyme/coinfections can result in PANS. Ours did and told me right away that if we were successful in clearing bartonella her tics, raging etc. would improve.
 
Most PANDAS treating doctors continue to focus on strep antibodies as the cause.
 
Our LLMD initially treated bartonella with abx for 2 years and recovered her to approximately 80%. I continue to treat bartonella and an underlying, negatively testing babesia with Buhner's herbal antimicrobials. It has taken 4 long years but she is now totally asymptomatic.
 
Don't be averse to treating with abx but keep in mind that:
 
1) you will need to supplement REALLY GOOD probiotics and fermented vegetables to keep the gut functioning properly, A significant portion of the immune system is housed in the gut and abx will impact immune function. This includes the antibiotic action of pesticides/glyphosate in food. Stop eating antibiotics in food, and that includes conventional grains and legumes which are dessicated with glyphosate to aid harvest, and the meat of animals that are fed conventional grains.
 
http://www.mdpi.com/1099-4300/15/4/1416
 
http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf
 
2) if you are not finding improvement with the abx your doctor choses, your daughter may have other underlying infections that are not showing up on tests. This may be because:
 
a) the doctor hasn't tested for the infection (ie your daughter may have bartonella, babesia etc. because they are known to be significant coinfections but your doctor didn't test for them. Because he has found lyme (or strep in the case of PANDAS) to be positive he will assume that lyme (or strep) is the culprit and treat only that. Lyme (or strep) treatment will not address bartonella or the other coinfections.) or because the tests that are run are not specific for the species of organism that your child is infected with.
 
DD13 tested negative for both Babesia duncani and B microti, the 2 standard babesia tests. She was also asymptomatic for it - all of her symptoms were bartonella. It was only when I trialled Buhner's babesia herbs that she had a herx (die-off reaction caused by endotoxins released from dying bacteria which cause specific cytokine (inflammation) cascades) which involved the well known babesia symptoms of air hunger, chest pressure, dry cough, large muscle (thigh) pain. It was at that point that our LLMD clinically diagnosed her with babesia and gave me the go ahead to treat with babesia herbs.
 
You will spend a lot of time researching in the next couple of years. Please don't leave the fact-finding only to your chosen doctor. It is important that you educate yourself on your daughter's illness and the reasons why her immune system was incapable of handling it in the first place.
 
Here I go - our children are compromised (and not only our children, but the many, many adults who are developing diseases like MS, ALS, Parkinsons, cancer - all with no visible underlying cause because doctors don't associate those diseases with infective organisms), not because they happened across an unlikely/improbable bacterial infection. These infections are everywhere and carried by many arthropods, not just ticks. There is a reason why some people succumb; their immune function has been compromised in some way and they are incapable of keeping bacterial numbers from overwhelming the body, and why other don't.
 
In my mind our children are compromised by:
 
1) their aggressive vaccination schedule (the metal adjuvants and other constituents result in immune-overactivation/dysregulation),
 
http://www.ageofautism.com/
 
http://www.vaccinationcouncil.org/
 
2) the antibiotic action of pesticides in food which kills beneficial probiotic bacteria in the gut resulting in overgrowth of pathogenic species which are not conducive to proper immune function/regulation,
 
http://www.momsacrossamerica.com/blog
 
http://articles.mercola.com/sites/articles/archive/2013/06/09/monsanto-roundup-herbicide.aspx
 
3) insufficient nutrition.
 
https://www.facebook.com/Dr.Terry.Wahls
 
https://www.youtube.com/watch?v=KLjgBLwH3Wc
 
It is a long, paradigm changing road; keep an open mind.

It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey.
 
It was 5 years ago today that our doctor told us about PANDAS.
 
It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria.
 
It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.”
Turns out, he wasn’t out of his mind.
 
Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different.
 
After 5 years, I find I’m no longer even thinking about “Life without PANDAS”.
 
After 5 years, I’m finally just enjoying living LIFE.
 
Are we fully recovered? Nope. Not even close.
 
There are still flares.
 
There are still way more meds than any kid should have to deal with.
 
There are still fights with the school.
 
There are still lots of doctors’ appointments, blood draws, and hassles with insurance.
 
There are still bad days.
 
But there’s also LIFE.
 
There are sleepovers with friends.
 
There are football games.
 
There are family trips to the beach.
 
There are lazy snuggly mornings curled up binge watching Netflix.
 
There are even some times when they’d rather be with friends than with Mommy.
 
There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!)
 
There’s logging onto Facebook JUST to catch up with old friends! (Who knew??)
 
This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have -
now.
 
Have we given up the fight? Nope. Not even close.
 
The fight will continue, just as it always has.
 
But we are not putting our lives on hold anymore for PANDAS.
 
Life is too short.
 
We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have.
 
Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close.
 
Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close.
 
Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement!
 
But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears.
 
God has given us so many blessings, and we decided it was time to start appreciating them!
 
And yes, it took me 5 years to figure that out.
 
It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have.
 
Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace.
 
I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now.
 
Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones.
 
Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.

Hi all,
I am an addicted reader here on the forum and have posted a few times but mostly dig for information. I have felt a little badly not sharing our successes and the moment I consider posting, the wheels seem to come off the bus. I wanted to post our progress now because my DS 14 is doing so well and I think it might be of help to some of you. I know I read and re read those hopeful success stories during the dark days of PANS.
 
My DS began treatment 2 years ago and we began to scratch at the layers thinking the sudden onset of tics, ocd, anxiety and sleeplessness was strictly strep related. Wishful thinking.....it has been quite a journey. There are moments it seems there isn't an antibiotic we didn't try. We found Dr. T, then we found another local doctor who is more familiar with Lyme and PANS in general and we were off. It has been a very long road and there have been a lot of ups and down. We tried so many different supplements I could run a vitamin shoppe from my pantry of things that held promise but didn't work or caused a rapid decline. Slowly but surely we began to peel away the onion layers. We used multiple antibiotics and we pulsed tindamax (2 weeks on and 2 weeks off). We tried every anti inflammatory supplement we could find and we really saw improvement. There were flares pretty often and just when I thought we were rounding the corner, he would turn back around and run the other way. It was very up and down.
 
Sometime, about 3 months ago, I realized that we were missing something. He was at about 85% but I couldn't find a way to get him all the way home. I didn't want to settle for almost back to normal. It didn't feel like antibiotics were going to get us there. I started thinking we were having a serious detox issue and that his gut was causing the problem also. I couldn't figure out what we had missed because it felt we had addressed so many angles.
 
I read the boards a lot but only squinted through anything on methylation. I was afraid to even consider it....thought my head would explode. Thanks to all of you (LLM) for your brilliant input and critical advice. I had my son on Quercetin, Garlic and anytime I gave him an epsom salt bath he itched for hours. He reacted to B vitamins with increased ticcing. I had to look at methylation. I ordered the 23 and me and sure enough we have some significant mutations that require us to alter the supplements we are giving. The main thing was a CBS mutation. I took him off all things that might cause a problem temporarily while waiting for our Dr. appointment to discuss the results and lo and behold he got to 90%. Then we started slowly adding in herbal remedies following Buhner (thanks Rowingmom.) We did this with the help of an herbalist and we went low and slow. I started to back down some of the western medicine (cefdiner, malarone) and we are now at 95%. I am slowly ramping up the herbal tinctures and watching in amazement as we see the re emergence of our boy.
 
I wanted to update all of you and give a little hope. There is a way out of all of this and it requires an ability to zig and zag and swear to something only to swear it off the next day. It requires flexibility and diligence and the support of all of the people out there who have been in your shoes and truly understand your pain. I wanted to let you know that we see the light here at the end of the tunnel.....and if it stalls out.....we will do something else.
 
Hang in there. You are all amazing and your kids are lucky to have you.
 

This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).
 
Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.
 
In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.
 
I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.

https://aealliance.org/international-symposium-on-autoimmune-encephalitis/
 
 
and the actual document:
 
https://aealliance.org/site/wp-content/uploads/2014-Symposium/2014-AEA-Symposium-Final.pdf
 
Hope someone finds this interesting, exciting and helpful! I sure did

I contacted NIMH for info on PANDAS for our doc. They suggested this website:
 
https://www.pandasppn.org/
 
I research PANDAS daily, and never ran across this site before. Was anyone else aware of this?

I need to brag, and so few people in the "real," non-PANDAS/PANs world will understand . . . so I come to you guys!
 
DS has had quite a road, and he keeps coming into his own, little by little, every year. He's now in his senior year of high school and our big accomplishment this past summer was the three weeks he spent on a college campus, living in a dorm with a roommate, eating at the cafeteria and attending an engineering "camp" designed for rising seniors, with college instructors presiding. That experience wasn't without challenges, but we threw him in the deep end, and he swam! Actually came away from it convinced that, in another year, he will indeed be ready to leave home for the "full-bore" college experience.
 
Still, he started his senior year with some anxiety and return of his nemesis of all OCD behaviors: contamination. No dramatic "flares," really, but just the creep and crawl of that insidious beast.
 
So when his AP Calc teacher called us last night, merely for the purpose of telling us what a joy DS is as a student, how bright he is, how he asks deep, thoughtful, creative questions rare of a math student of his age, how respectful and polite he is in class, how grateful this teacher is to have him to teach . . . I almost cried. DS has enjoyed academic success, yes, particularly once we got him effective PANDAS treatment. But as a 2E kid to begin with, who also has a tendency toward high anxiety, he's rarely appreciated to this extent by his instructors. More often than not, they cut him slack on the one side (keeping up with production requirements, occasionally behavior) because he performs so well on the academic side (particularly testing which, interestingly enough, the anxiety doesn't seem to grab a foothold in). But genuinely appreciate him? Even seem to flat-out like him? That's rare!
 
I guess I'm bragging almost as much on this teacher as I am on DS . . . in my book, they're BOTH keepers!
 
Thanks for listening!

rowingmom, I'm so happy for you and DD. You are always so helpful and insightful in your posts, thank you for sharing your experiences and knowledge. :)

DD13 is doing wonderfully! Three years ago I would not have believed that she could improve to the extent she has. She has lost all cognitive/executive impairments and her Tourette's is only suggestible (if I ask if she needs to tic she will have to - motor only, no vocals), and not otherwise visible. Going back to school has not resulted in any sort of relapse.

We were at the cottage this weekend and without me asking she got out her homework (Grade 8) and reviewed (reworked) 30 math questions for a test that she has today. She packed the homework herself, got it up to the cottage and took full responsibility for studying. She worked for at least 3 hours. Neat and tidy writing, organized work area. At dinner time she admitted that she was having trouble with one question, but that she felt after dinner when she had had a break that she would figure it out - and she did. No screaming or crying. No throwing things or raging. Absolutely no frustration; just confidence. It was truly amazing!

This was a child that 3 years ago (Grade 5) I had to physically dress, brush teeth, tie shoes, pack backpack, pick up homework from school and work through unfinished school work/homework one on one because of ADD. She had an IEP and the help of the classroom EA. She sat behind a screen and wore ear plugs to decrease distraction. She was removed from the classroom for testing and had an EA sit with her to redirect her attention. She had an EA or another student go to the bathroom with her because she would become distracted and forget to go back to class. She had to eat lunch in the special needs classroom so the teacher there could redirect her to eating; otherwise her lunch would return uneaten.

Her printing was huge and messy and her books covered with doodled pictures (the same one over and over - her OCD). She raged, she screamed, she hit, she was socially withdrawn and regressed. She was so fatigued, dizzy and in so much pain that she had to sit out of gym class, or sit on the curb watching the neighbourhood children play. She had Tourette's so badly at times that she couldn't read because of head snapping/bobbing/eye rolling, and often couldn't give presentations in class because her vocals were so bad. A couple of times her Grade 6 teacher would recount this to me and cry, she felt so sorry for our daughter.

Her improvement has been nothing short of a miracle.

We are maintaining low doses of Buhner's bartonella protocol (minus l-arginine), I am still messing about with the babesia herbs. Both DD and I are reacting very strongly to bidens (1 drop 3x daily) (which Buhner says is not supposed to be as potent as cryptolepis), with brain herxes (dizziness, brain fog), but with the help of Julie McIntyre we are still seeing improvement.

One thing that I found to be a surprise was Julie's recommendation of cilantro/zeolite for detox. I put off using cilantro for about 8 months. One because I thought it was baloney (you'd think I'd know better by now), and two because I couldn't find an organic source. Well I found an organic tincture source, and as soon as I started using it (1 drop 3x daily) our daughter's remaining symptoms declined noticeably (that is, even my husband noticed).

I messed about and ended up being too enthusiastic (10 drops 3x daily) which resulted in a yeast infection (googling revealed that the gut may overgrow yeast to protect the body from too many metals being dumped into the intestine at once). Instead of using zeolite we are using Diatomaceous Earth; we may switch to zeolite (which Julie swears by, and she hasn't led us astray yet - except for dosages which are very tricky for us (we find 1/4 of recommended dosage to be best).

The amazing thing is that during a recent trip which entailed a week's stay in a "free wireless" hotel (meaning wireless is EVERYWHERE) both our daughter and I were unaffected by the EMF's. We are usually quite electrosensitive. Previous trips to wireless available buildings (museums, hotels, restaurants, malls etc.) generally resulted in an increase in symptoms for our daughter (especially ticcing, fatigue and headache to the point of having to sit down and rest) and palpitations/anxiety for me. I was not looking forward to staying in the hotel, and neither was our daughter, but after our first night there we realized that we weren't being impacted to the extent that we had been. We actually slept like logs!

Cilantro and clays are used in many natural metal detox remedies; and it would make sense that removing metal burden from the body would decrease reaction to electromagnetic frequencies.

No child should have to suffer the pain, fatigue and cognitive dysfunction that DD has had to endure, but I have learned so much from this journey:

That mainstream medicine may not be the be-all, end-all.

That bacteria are not the only problem, that compromised immune/detoxification systems are responsible for symptoms as well.

That our children are being poisoned by the pesticides in their food (big agriculture) and by the metals/adjuvants in the 70 (!) vaccines now recommended by experts (mainstream medicine / big pharmaceutical companies).

No large corporations/conglomerations are ever again going to tell me what is best for me or my family.

Although in the past I would have considered myself nuts to even suggest this to anyone else (let alone believe it myself), I now read several alternative health sites:

http://www.thehealthyhomeeconomist.com/

http://www.mercola.com/

http://www.greenmedinfo.com/gmi-blogs

http://www.chrisbeatcancer.com/

http://www.i-sis.org.uk/index.php

http://www.ageofautism.com/

http://www.momsacrossamerica.com/blog

It's so traumatic the things our kids go through. I am glad he's feeling better.
 
DD got so used to being in pain that now she actually marvels at what she can do without it. She kept up with me cycling today at 16-18 mph and said she feels super strong. I have waited a long time to hear those words.

So, everything is fine. The pain eventually subsided and there was no sign of infection. The doctor said it was likely a lot of gas from the abx.
 
Good to know about the lymph nodes though rowingmom, that may also be a possibility.
 
missmom - he said he didn't feel any pain during or after urination. It was just a constant, intense pain that lasted for about 2 hours.

I feel like writing this today - for my DD's pediatrician and for all of you on this forum.
 
Thank you Mr C - for putting up with my relentless pleas for help, the endless emails and offerings of information which you read, for fitting me in for an emergency appointment when you were already overdosed with waiting lists and appointments. Thank you for bothering to find out about PANDAS even though you admitted knowing very little. Thank you for believing in me and for prescribing the prophylaxis abx, despite what our GP decided. Thank you for answering my emails and for accepting my phone call when I was in floods of tears and desperate. Thank you for having an open mind.
 
I also want to thank this support group on ACN Latitudes - I spent countless nights (all night) on the internet looking for anything that may explain why my little girl suddenly changed, why she was so frightened of everything, why she wouldn't leave my side, why we had to go through the same bedtime ritual every night, why she couldn't sit still or concentrate, why her body constantly writhed around and she was constantly making strange sounds, why she suddenly started peeing every 5 minutes with no hint of a bladder infection. Why, as her mother, I felt completely helpless and desperate. I found so much information here..... thank you parents for sharing your experiences. It has helped immensely.
 
Today I am looking out of the window watching DD playing with her friends in the garden. Enjoying their company. Feeling proud that she went to a friend's house on her own without me. She will relax in the armchair after tea, watching her favourite programme, being comfortable in her own skin, wearing the pyjamas she loves with the seams that no longer bother her. Drifting into a relaxed sleep with no fear of thunderstorms, hailstones or monsters. And waking up happy in the morning with another fun-filled day ahead.
 
Dare I relax??? Would it jinx this lovely euphoric feeling that has blessed our family this past few months? I can only pray it will not. There is a positive side to this nightmare - when times are good, boy do we appreciate them! We will never take the little things for granted again.
 
So THANK YOU!!!!!! God bless you all. X