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SurfMom last won the day on February 27 2018

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  1. The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented. Then see what tests he suggests and allow him to make the diagnosis. Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance. I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-).
  2. The progression of her treatment was as follows. Amoxicillin (failed), Azythromycin (failed), Cefdinir (failed), Prednisone (failed), IVIG Monthly with Cellcept (some improvement), IVIG Cellcept solumedrol (improved then failed), IVIG Cellcept rituximab (improved then failed), IVIG Cellcept cytoxan (improved then failed).... then... IVIG (monthly) Cellcept (daily) tociluzimab (monthly) almost immediate, steady, staying improvement.
  3. Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help: Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed), 9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including high DNase titers, etc. If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery. You are more than welcome to PM me.
  4. 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.
  5. DD15 is struggling with similar issues, working at the speed of a solid in trying to perfect the reading and the work, to the point of finding grammatical errors in the textbooks. She is historically an academic over-achieving student so the OCD behaviors exacerbate her perfectionist tendencies. She is so goal-oriented that I turned that in my favor. We set times for completing work using an old-fashioned kitchen timer that ticks (there is that metronome concept)....and then she enters the time to complete the task on a printed spreadsheet. She decides whether or not she meets the goal and then rewards herself accordingly - amazing but it works. When that timer goes off, the books close no matter what and we go do something away from the room, just to break the grinding-to-a-halt-cycle. It drives her CRAZY when I force her to quit studying and she is beginning to connect the dots that she needs to pick up the pace when she has the allotted time. The patterns of behavior in the older kids is fascinating. The only difference with DD is that she cannot stand to have the TV or radio on but that may be due to her thinking that good students study in a quiet setting. At this pace DD will complete high school in about twenty years which seems a tad too old for prom, so as I keep trying strategies, I will gladly share them.
  6. We had to move past antibiotics to IVIG and immuno-suppresants (Cellcept) to turn a long slow corner towards improvement. Apparently, DD 15 was/is still producing antibodies long past the infection phase.
  7. You've got my whole-hearted encouragement~ You have an IM.
  8. Please be prepared to hit the eject button if you are dissatisfied with your doctor. I am suspect of the ability of one who does not know what rheumatic fever is. While less common than it used to be, it is a well-known and not unheard of diagnosis. My daughter was diagnosed with it although her symptoms are somewhat dissimilar as she has had no urinary, ear, skin or mouth problems. That said, do not go in thinking any particular diagnosis, just go in with a complete list of symptoms written out and have multiple copies so one can be put directly in your file. One little symptom could be the lynchpin and you don't want anything overlooked. When looking at titers, it will take time for them to be meaningful as they will be looking at trends but any doctor worth his salt will see that you WERE infected at some point. If your insurance requires referrals to be seen by specialists, I would definitely ask to be seen by a neurologist, immunologist and rheumatologist. Good luck...I think you are heading in the right direction just by being here.
  9. Nancy, I am so delighted for your family and thank you sincerely for taking the time to turn back and give those of us a bit farther down the mountain some encouragement!
  10. I am in complete agreement with Tpotter about talking the language that doctors speak. If you use the general term autoimmune encephalitis, this is a meaningful to every doctor with a protocol of treatments that most are versed in right now. I am so sorry you are having to wrestle depression. Please try to eat well and don't be too hard on yourself. Just the fact that you are reaching out and determined not to be ignored when you KNOW there is something going on is a very healthy sign! Fight your fight, be proud of yourself. You are stronger than you think you are. Big hug!
  11. Amazing. I popped in tonight feeling down because tomorrow, my son starts his sophomore year and his conscientious, overachieving sister with PANDAS is starting a second year at home, barely able to get through the one homebound course we are having her start. She is confused and angry as to why she too is not going and it is hard to get her to understand. For the first time ever, we start the year with no fanfare and no photos. DS will get on the bus and DD and I will spend the morning packing for a Tuesday trip to Duke for IVIG and followups. Even worse I am mostly alone in still mourning over the loss of our beloved dogs last week. Tough. Even so, I am keeping my head above water with my daily runs, a bit of surfing and my gray-hair-denial salon visit every six weeks. Blondes have more fun, right? LOL. My mantra is no matter bad how I feel, it is worse for her. That thought alone forces me to straighten up and live the moment for both of us. Blessings and cheers to you all.
  12. Lauren, yes, my daughter has one of the most severe and unresponsive cases. After responding excellently to antibiotics, she became symptomatic again after two weeks and was on a downhill slide from November until she bottomed out in February. She had tics, very disturbing chorea, stumbling gait, complete shut down of academic ability, mutism, OCD aversions (dogs, touch, germs), difficulty sleeping, mood swings, and finally catatonia to the point that she did nothing but lie in bed refusing to eat, drink, take medications and swallow saliva to the point of requiring a feeding tube. She became like an infant again even needing toileting and showering help. There is no question that had we not hospitalized her, we would have lost her as she was shutting down in every way imaginable. Powpow, thank you for the mention of the central catheter. Finding veins are getting tough and as stoic and compliant as she is about needles (which wracks me with suffering over the number of times they have to stick her to get IVs going and the dozens of blood tests) it might be an option as this goes on. This kid deserves a medal for her attitude through treatment. In terms of her treatment, she started with IV pred at a high dosage and then a 2mg/kg treatment. After that her IVIGs were spread out two eight weeks and then narrowed to four as she was not significantly improving. The IVIG/prednisone worked extremely well for her chorea and tics, and I know the IVIG was the key in these symptoms as her tics and clonic behavior kick in as the effects of the IVIG wane every three-four weeks. Yes, Ativan is what seems to help with the catatonia. She is no longer sleeping all day and preferring to sit in a chair and zone out. Getting her to respond verbally has been exhausting, and after a long and high dose, we are seeing some kind of improvement with her communication We still have a long way to go. Still cognitively slow in her delay time, ability to follow simple directions, difficulty doing even the simplest writing tasks (I suffered for her so as she tried valiantly through the symptoms to perform during the countless neuro tests...the clock, writing a simple sentence) her trajectory of improvement was so slow at seven months, it was time to consider Cellcept. We were told it would take six weeks or so to start seeing signs of progress and that was indeed the case. The Cellcept, as described above is an immunosuppressant that works by stopping an enzyme used in the production of DNA. As a result it can have devastating results for an embryo, so females of reproductive age have to provide assurances that she will either be on two types of birth control or celibate while on the medication. There is no indication that there are problems down the road once this medication is no longer prescribed, but I have lingering concerns about possible longterm effects of Cellcept since DD is so young. For the first time since November, we are starting to see recognizable signs of our daughter. Two weeks ago she smiled and laughed a little for the first time in six months. She is starting to be part of the world again, asking what the plan is for the day, taking her medications and asking good questions like what her medications are for and when her dad is coming home. The other night, with still halting speech, she corrected my grammar and we howled in celebration. I can finally get her to write in a journal and she is doing so with ever-increasing length, handwriting and quality. Today she awoke with a smile patting her dog on the head (whom she has avoided as a wild and germ-ridden beast). She has gone from operating on the level of an infant to that of a fourth grader. As a freshman in high school, we have a ways to go. With the complexity and individual nature of the expression of this condition, I too wish the medical world would do a better job of collecting anecdotal information from parents and do the extensive data analyses to extract various combinations of medications, treatments, supplements, dietary habits and environmental controls in comparison to varying combinations of symptoms. There are just too many arrows being shot in the dark with targets (kids with different expressions of the disease) moving at the speed of light. For those interested in diet and supplements, DD has not been on any vitamins or supplements for months. She was given a course of Vitamin D when that came back low (consistent with having an inflammatory response) in an early blood test. She is (and has been) a strict ovo-lacto vegetarian and we have her eating organic foods as they are available. I maintain that diet is critical in fueling the body's response to this and my only complaint in her treatment has been the poor quality of food available to her in the local hospital. Duke's dietary program is better. The combination of treatment with the addition of Cellcept is no magic bullet, and we have been told that we still may have a year or more to go before we see DD back to full-functioning, but the progress is significant and steady. For the first time, I have some real hope that I have a turtle who is going to win the race. . Feel free to PM or keep firing questions.
  13. Falling, I am really pulling for you. I can't imagine trying to get through health issues along with managing your daughter and for that I wish you strength, plenty of rest and some peace for your family. DD 15 was really neurotic, expressing some very scary behavior when this started. I can't emphasize enough how important I think it is to approach this as a physical condition with psychological symptoms - but very real and potentially dangerous symptoms that have to be treated too. The smartest choice we made was to push to have a neurologist/rheumotologist/immunologist lead the way on treatment as this has physical causes. DD has had thorough neuro-psyche testing and has a pediatric psychiatrist...but this was secondary to addressing the inflammation of her brain resulting from of her immune system going haywire (cross-reacting antibodies). It was admittedly tough for me to cross that bridge into psychiatry but reality forced me to realize this was not going to be a short-term problem and we did need the support from that specialty. We are eight solid months into treatment and finally making gains. It has been eight months of playing cheerleader to a pretty unhappy kid which has pushed me to my limits at times. DD still has OCD behaviors, cries sometimes for no reason and has angry outbursts (prednisone) with a general state of irritability but it is turning around. It will for your daughter too. Here is what we did to make things better at our house: 1. I put a queen size bed in DD's room. When she is having tough nights, I can sleep in her bed with her. That means I can turn down that mom radar and get some sleep myself. 2. My husband and I tag team so I can nap, run, surf and get my hair done. It makes all the difference in the world to get that time. I give him the same unencumbered breaks. 3. I dug out and hooked up the baby monitor. It allowed me some distance so I can do selfish things like take a shower, lol. 4. We removed the burner handles on the stove (because in our case, DD was already cooking) and bought a home safe where we keep all the dangerous medications. I thew out all old medications that we aren't currently taking. 5. We boxed up and put away all but two sharp knives and one pair of scissors...just easier to keep track of a few. Tools were locked up. 6. We walked through every single room with a "what could I do to harm myself in here" perspective and tried to secure what we could. We got rid of all the cleaning supplies in the kitchen and bathroom and locked them in a cabinet in the garage. 7. We put in our minds that if she wanted to hurt herself...she could. That meant we had to watch her like a hawk. Get respite care if it goes on too long so you can get a break. I don't want to overly alarm you but we just lost an autistic child to a drowning here because he walked out of a condo and made his way into the gulf. Bad things can happen and you can't let your guard down for a second. Take every offer of support you can. It won't last forever and you need to take care of yourselves so you can stay on top of your child. This probably won't last and it's not "her" but it's very real and very dangerous. Trust your gut (Oooo, bad pun) and be confident and assertive about what you want, what concerns you have and when you want to turn off a switch, whether you are in ER or in the doctor's office. My sense is that it is better to seek treatment through your lead physicians than in the urgency of the ER but there are advantages in going that route too...faster diagnostics for one. Godspeed that she moves out of this phase quickly and forever.
  14. After eight months of what most would call a constant exacerbation, debilitation to the point of needing a feeding tube due to OCD swallowing refusal and help with all functions including toiling, complete shutdown of speech, climbing antibody titers and negative affect, we FINALLY have some improvement in DD15's condition. Here is the combination that appears to be reducing her antibody production or cross-reacting antibodies: IVIG monthly at a 1g/kg dosage Prednisone daily at 30 mg. Cellcept 1750 mg. daily <---This may be the key Also in her case: Ativan for catatonia (no speech, shut down, wanting to sleep all day) Zoloft for moods We have a very long way to go but crossing her fingers that we have turned a solid corner. Will keep you posted.
  15. That is the mystery we have been dealing with in regards to our DD15 with a constant course of Zith, monthly IVIG, and a fairly high dose and ongoing prednisone. While on the above, DD's titers continued to climb and for that matter, soar. I believe that once my daughter's antibodies began to fire off with her one and only known strep outbreak, her bone marrow started an uncontrolled and unending production of antibodies, that after that first exposure, had nothing to do with the strep. It essentially became an unbroken cycle that could not be stopped even when the bacteria was no longer present. After months, we finally have her titers significantly coming down and her condition slowly improving with the addition of Cellcept to her protocol of monthly IVIG and daily prednisone. Read up on Cellcept. It is a hefty medication with significant possible side effects. My hope is that we have broken the cycle of antibody production (and maturation in the thymus if it is still functioning since she is post adolescence).
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