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  1. 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.
  2. 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.
  3. You've got my whole-hearted encouragement~ You have an IM.

    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.
  5. 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!
  6. 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!
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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).
  12. 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!
  13. 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.
  14. 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.
  15. 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: