I'm reading this article now, but one of the things I like about it is the run-through the parents go through with trying to attack this with behavioral interventions (ie trying to be "better parents") and how futile that is when the brain is inflamed. In other words, rewards charts may not be so effective when the child's brain is on fire,
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.
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 am not editing. I used to. I don't anymore. See? LOL
(Ok, confession... I came back and read this AM, and gently tweaked the typos).
I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.
My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.
I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.
Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.
I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.
Can untreated PANDAS become antisocial behavior? I don't know.
I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!
I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.
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!