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SurfMom

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Everything posted by SurfMom

  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. 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.
  3. 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.
  4. 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.
  5. 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.
  6. My straight-A daughter's grades are plummeting. We are doing what we can her at home with two exacerbations in four weeks, but it is exhausting keeping her on task, let alone getting her to complete and understand her work in Honor's Geometry*, Advance Biology, Honor's English. When she was back in gear, she completely broke down in tears over her grades and tried so hard to get back into gear that I think it facilitated this last episode. For those of you with experience, which direction did you head? Home bound programs? An IEP? A 504 plan? We are thinking on the positive side and very concerned about how her grades and mastery will impact her ability to get into the fields and colleges she is interested in. Thank you so much in advance! *Remember when we used to ask, "Why are we having to learn this stuff?" The answer is so you can sit down 30 years later and help your struggling kiddo.
  7. As some of you know, DD15 had a her first exacerbation that started around Halloween, bounced back beautifully with a high dose amoxicillin course, and then started an exacerbation at the end of November that as of two weeks ago still had not broken. Took her to Rothman to see a non-plussed ped psych who put us on yet another antibiotic and sent us home. We called again as she deteriorated and we tried another (call us back in two weeks, blah, blah, blah...). A call to the nurse told us that no only is Remfer leaving (no great loss) but Dr. M is not seeing new patients. With a gut instinct that this was more than PANDAS and worried about her still deteriorating state, we pressed and got DD15 into her ped, neuro on the 23rd. Very concerned about her increasing catatonia, flat effect and chorea (for the first time) with tics, she made calls to Duke where she did her residency and we were seen there last Monday. This recommendation came with the understanding that no nearby hospitals are autoimmune centers with the ability to do IVIG if necessary. A quick exam and the ped. neuro and ped, rheumatologist had her admitted and DD had a grueling three days of tests including PET scan, echocardiogram, a lumbar puncture dozens of blood tests (for pathogens, allergies, toxins, cbc, anitboidies, viruses, immunoglobulin, etc.) ultrasound for possible teratomas, and antibody tests sent to Mayo. In the thoroughness of her diagnosis we have seen neurology, psychiatry, rheumatology, a dietician, speech therapy, physical therapy and immunology. By Thursday all the major concerns had been eliminated and we were looking at a diagnosis of autoimmune encephalitis (a broad category that would include PANDAS) with a recommendation for steroids and IVIG last Thurs the 31st with a second round of pred yesterday. The prep for the IVIG left her with no side effects and we already have a date for her second IVIG in late Feb. We are now in a hotel near the hospital waiting for her to have some neuropsych testing before we leave town on Monday and we already have a date for her next IVIG at the end of February. I realize that we had the good fortune of having a neurologist who had an excellent reputation as a resident at Duke where they have recently started an autoimmune center but we are stunned at how fast the diagnostic and treatment phases have taken place. What we wish we had done and what we learned: 1. Don't hesitate to move beyond a pediatrician and get seen by a pediatric neurologist early on. 2. If your child does not improve with antibiotics soon like ours did, do not waste months moving from one desperate course of antibiotics to another for months and get on with step one. This is, after all...her BRAIN, joints and possibly heart. Unfortunately, for us and others, the symptoms could also be degenerative conditions, cancer or other causes in which time means everything. 3. Do not rest with a diagnosis with PANDAS. Step back and consider ruling out every other possible condition 4. Get your child to an autoimmune center like Mayo or Duke. There are several others around the country. 5. In marriage with four above, do NOT just seek out a ped neuropsychiatry program like USF and Rothman without a complete physiological workup. Deal with the psychiatry AND the physiology of what is going on. These two are tied together but they do not stand alone. 6. Be educated when you go in but do not be married to any name of the diagnosis. The reality is that every single autoimmune presentation and cause can be unique there are hundred and hundreds of antibodies and there are more being discovered every day. Treatments like IVIG cover a broad spectrum of diseases. Again, there could also be co-morbidity. 7. Be educated on your insurance and if your child is as sick as mine was/is you may want to push for admission to speed diagnosis and treatment if your coverage will allow it. DD15 is already showing some signs of improvement and now after a grueling week she is sleeping off the effects of the diagnostics and treatment in one WEEK. We are not going to be Pollyanna-ish about her recovery and how long the pred and IVIG will hold, but we feel like we have a direction, some home and an gratitude for the speed in which she was diagnosed and treated. For the first time in almost three months yesterday, I saw my daughter SMILE with nary a tic in sight. If you have questions, fire them off or PM. I am still out of town as we have neurpsych testing and travel home, but I will get to all of them.
  8. Reading Speed

    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.
  9. What if abx don't work?

    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.
  10. You've got my whole-hearted encouragement~ You have an IM.
  11. PLEASE HELP

    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.
  12. Milestones

    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!
  13. Don't go to the ER.

    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!
  14. Tired of defending PaNDAS

    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.
  15. Cellcept - Working!

    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.
  16. 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.
  17. 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).
  18. vacation...not going well

    Advice..... Let her burn some steam. Wherever you go, look for places with playground...churches and schools. Every town has one. If you are driving more stops will be needed. Days out? More breaks will be needed. Short days. Stick to your routine, especially bedtimes like its the army. Sleep is the key. Be firm with family members that this has to be a non-negotiable. Watch the sweets. I don't think it hypes kids up as much as it causes sugar crash making them irritable. Tell your husband not to worry about her behavior around family members. I am a former educator and tend to have high expectations for my kids' behavior in public and put on their happy sides around family members but right now, I am asking everyone to grin and bear it. Watch overstimulation. What you think will be fun for your child can actually be very demanding, almost like work. Amusement parks, flashy signs, noisy places can make already haywire brains go into overload. Every new situation is loaded with new sensory information which will result in total exhaustion...no sleep, temper tantrums, meltdowns. By comparison, imagine stepping off a plane in Russia at 3AM after a sleepless flight having taken Benadryl, having lost your passport, everyone is shouting at you in Russian, you can't find your luggage, florescent lights are searing your eyes, there is Dutch rock music in coming over the PA, some stranger insists that you eat some grey food concoction that you are pretty sure it goat, and your happy, smiling travel guide is cheerfully leading you towards a tour of Red Square. Same thing. Remind your husband to take care of himself let him run, cycle do what he needs to do to vent and get someone to watch the kids so he can take a nap every day. Encourage him to ask for a little help when it comes to a short break. Thank your husband and thank him again...make him so appreciated that he will be glad for you to cover for you again. It is such a good thing he is letting you do and I know you empathize. Lastly, do not feel guilty and take care of yourself. I wish you a speedy recovery, knowing that any procedure is the last thing you need right now! Good luck and good beer to your husband!
  19. Finally on the right path

    T, thrilled you have someone listening and resetting the clock on meds. I think it is great that your DS allowed the exam to take place in the car. I know it is like a trip over the Rockies in winter just trying to get our kids to cooperate at time. DD15 is also on Azyth. starting at 500 mg to 250. She is a spunky little thing with no antibiotics improving behavior but addressing prophylactically at this point. Improvement at the speed of a solid seems to be coming from the addition of CellCept which either in combination with the monthly IVIG or standing alone. From the pits of complete catatonia in which she completely shut down (no communication and needing a feeding tube), she is starting to write a little in her journal and ask for things she needs. We did a PT round too, it got DD (a high school runner, surfer, swimmer). It got her standing up straight and into some activity she refused with me (aah, the joys of prednisone moods). It was a good call. We too will be looking at CBT probably at Mayo when she improves. Always thinking about you and hugs your way.
  20. Close to being diagnosed Bipolar

    EA, yes great point...we have a superb rheumatologist on our team who works closely with her neurologist. They are hand in glove in dd's treatment.
  21. 4 Nikki..... Thank you for the music link. Her is one in appreciation. I sing it to DD 15 (to the top of my lungs) and it seems to fit well with this thread:
  22. My daughter just missed her freshman year in high school after being a student athlete and a 4.0 honors student. She missed football games, dances, getting her driver's permit, texting her friends, shopping outings, vacations and now the reality of not graduating with her peers or...even worse...her twin. As a teacher and knowing her vast abilities it was not a decision I took lightly or easily. She went from honors classes, to homebound coursework to nothing at all in a three month period. What I know: It is going to be devastating when she comes out of this. What else I know: After the tears, hurt, anger, jealousy and a range of expected emotions and roller coaster rides, she is going to be admired the rest of her life for persevering through this and encircled by people who are going to lift her up through every tough moment. In the end she will be an adult like everyone else, she will be in college classes in which the age range of students will be 17-70, and she will be healthy with the power of knowing there isn't one thing on this planet that she cannot get through. I do not feel guilty, I feel empowered knowing I made the right decision in letting her get well at her own pace, putting her health above everything else, and being prepared to take the blame if she, or anyone else, points a finger at me over this decision. A year, two years...in the end, it will be offset with the riches she will carry with her in the love, power, experience, wisdom, strength and confidence that will come with this journey. I don't feel guilty; I feel like a fierce mama tiger.
  23. Close to being diagnosed Bipolar

    I might also add that I strongly recommend a consult with a child neurologist to look at the physiology of what is going on in your child's brain....it could be a host of conditions related to brain inflammation caused by an infection or cross-reactive antibodies including autoimmune encephalitis which could be indicative of a host of illnesses like Lupus, rheumatic fever, cancer and so on. A neurologist would look for inflammation, lesions or seizures that could be causing the symptoms through EEGs (particularly a 24 hour one) MRIs, PET scans, CAT scans, lumbar punctures etc., beyond just the markers found in blood tests. It is a HUGE and alarming leap to give a child a bipolar diagnosis without having all physical causes ruled out. Be wary of a professional inclined to do so. All good things your way!
  24. Looking for Alabama Docs

    Just PM'd you!
  25. Yes, engineers all over the family. Environmental, aeronautical.
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