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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
  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 rag
  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 i
  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
  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 l
  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 ov
  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
  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
  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 s
  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 long
  16. 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
  17. 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 compl
  18. 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.
  19. 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:
  20. 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:
  21. 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 jus
  22. All good things! I hope you get the answers you are looking for and the strength to keep pushing! Rheumatic Fever. This is the primary diagnosis for DD 15.
  23. T. Anna...I PM'd you but wanted to add for the benefit of everyone that if you are not seeing positive changes, which is the case for us, you might really want to keep broadening your circle of experts....pediatric neurology, rheumatology, immunology....if you haven't done so. Sometimes it worries me that we get locked into a diagnosis and let the tail wag the dog when it could be something more. We just hit the seven month mark with nary a break in DD 15's symptoms. Sigh. Have a good day. If we as mothers of these kids earned a medal for all we are doing while we trudge our way throug
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