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Everything posted by T_Anna

  1. A brief update. In September we decided to see if DS had any co-morbid autoimmune encephalitis conditions. His ACE levels & SED rate were high (SED was/is 50) 0-32 is normal range. His thyroid antibodies were high and indicative of Hashimoto's Encephalopathy. Around Christmas we saw the most positive signs to date (since January 2013): He helped me clean up and store all his hoarding He gets up more He eats different things on different days and makes his own food (eggs, burgers, cookies, etc) He changed his clothing more frequently He talked on the phone more He stopped many ba
  2. Dr.T ran the AE blood tests. We have found Hashimoto's Encephalopathy. I will post an update separately. It included thyroid antibodies, ace levels, SED rate, etc. T.Anna
  3. We will not be getting the HPV vaccine. I agree with whoever said that encouraging condom use is wiser. T.Anna
  4. I would call an advocate and find out what letter you can send that will make sure you get your results. I have seen kids with dyslexia get private school covered by the parents had to sue the state (NY) first. I would switch him now, if you can afford it and it seems like a good fit move on. T.anna
  5. I would get copies of all the test results. Spect scans, etc, too. With DS they said all the blood work was normal and when we went over the results we saw an inflammation marker that was elevated. We pursued that and found Hashimoto's Encephalopathy. T.anna
  6. We have done 5 HD IVIGs all at home through walgreens infusion. The most important thing is a good infusion nurse (infusion center should be ideal). I think you want to be sure there are no active infections. T.Anna
  7. <<plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago...>> Our AE results were also post PEX. We re-ran a bunch last week and I'll get the results tomorrow, I'll let you knwo if they are the same or skewed. Lately, our biggest improvement is that DS passes out around 11-12 at night and sleeps until 8-9:30am. we have plateaud a bit in other areas (changing clothes, bathroom) and some restrictive eating/bathroom avoidance returned this week, but we are only a week out from IV steroids so maybe that h
  8. People on Facebook have been very positive about treating parasites. We had a break through after giving Ivermectin, but the next time nothing, so it might have been the HD IVIG. T.anna
  9. We are considering enrolling DS in Laurel Springs, its a private school out in CA. The kids have 10 months to complete thew curriculum and there is no semester or schedule to follow (they can complete in two months too, if they are speeding along). It is fully accredited and caters to children in sports and acting who don't have time to attend regulat school. It was highly recommended by two different child advocates. A course costs about $650 (for HS) and a full course load was about $5k-6k. DS needs to "own it" so today I will try to get him to sign on. He has been begging his siblin
  10. I'll chime in too. DS15 has had PANDAS symptoms since he was a toddler (at 2 years old started with fear of grapes, frequent urination, speech regression). He was diagnosed November 2012, at 14 years old after seeking CBT help for debilitating scrupulosity and more reg. OCD. Found the following infections: Strep, MycoP, Coxsackie (Prob his initial trigger with Strep and Chicken Pox), EBV, etc. He stopped attending school January 24, 2013 and stopped showering and voluntarily changing his clothing. February 2013 HD IVIG (small improvemnet) March 2013 HD IVIG (not much dif
  11. We did IVIG while DS probably still had active infections (back in February 2013) and we still had some improvement. I think that your risk of a setback is relatively small. If there is a regression you will have someone willing to take reponsibility and who will effort to find the reason. May I ask who the doctor is? T.Anna
  12. My husband had a heart attack at age 31. A few weeks ago he tested + for strep and called the cardiologist who said it was fine to take a zpack. FYI, T.anna
  13. Thanks MommyBee. I think we are moving in the right direction so that is inspiring. Thanks again, T.Anna
  14. I second what PowPow said. We have done 5 HD IVIGS total, but 3 (almost monthly) since plasmapheresis in August (that would = 10 days). We are finally seeing some good results from either the IVIGs the oral steroids (or a little of both). In fact today we did our first dose of IV steroids (out of 4 over two days). I'm a believer that suppressing the immune system is the way to go. DS tested positive for so many infections that it became obvious that his immune system is really broken. Btw, we hadn't seen anything this positive since starting treatment a year ago. Good luck, T.A
  15. Im so happy to see this thread. I put DS15 back on D3 (very low levels) and he was really in a rotten mood. I took him off and he is much better. I couldn't find any reason except the Viramin D3 supplementation. T.Anna
  16. Glad to hear things are progressing well. Prayers and hugs. T.Anna
  17. DSMom, our story is similar, except we are a few months out and things are looking up. DS15. Probably sick with PANDAS since age 2. Diagnosed November 2012. We tried a steroid burst in December, did nothing. Tried a taper in February and no noticeable changes. HD IVIG #1 in February (only noticeable change: eyes no longer dilated), HD IVIG #2 in March (only noticeable change: rages fewer and less intense). DS still stuck on couch, not bathing, changing clothing, etc. we decided to take a break from IVIG and do Molecurela. Results arrive in June, PANDAS highly likely, CamKinsae over 200.
  18. DS15 has probably been sick for 13 years. He was diagnosed last November (2012). We have been treating aggressively since February 2013. He takes abx and antivirals as well as supplements. He has had five HD IVIGs (2 before plasmapheresis), we have started to see improvement in the last week. He used to shower for 30minutes to an hour a night. He was meticulous with his clothing. Last January he stopped going to school, showering, changing his clothing etc. It has been a long road back. We hope that we are finally seeing the light, but it's in inches and we have miles to cover. T.anna
  19. I would call again. You may want to send a holiday gift and then call after it's delivered. I've done this and it seems to work, people feel obligated to respond after receiving soemthing for free. I would send one to Dr.N and one addressed to the secretary (with an F, forgot, Fraulien?). T.anna
  20. CobbieMommy, please also consider that he might be reacting to a virus/bacteria from a teammate. My DS ended up with ringworm from his teammates when this flare began. Wrestling puts them at risk, mats have germs like ball pits. Dirty mats and guys sweating, sneezing, etc who may be carriers. T.Anna
  21. Has anyone tried Reishe Mushrooms? Integrative doctor wants to add this: http://www.webmd.com/vitamins-supplements/ingredientmono-905-REISHI%20MUSHROOM.aspx?activeIngredientId=905&activeIngredientName=REISHI%20MUSHROOM
  22. Columbia Presbyterian here in NYC doesn't welcome PANDAS despite Mady Horning's research. An on staff ped neurologist said "I've seen Pandas at the zoo"...and overlooked a friend's child's LabCorp + for Lyme (ID doctor said it didn't present clinically .....she had double vision and neck pain). Thankfully the neuro ophthalmologist put her on IV abx in hospital and abx for a year. T.Anna
  23. Anyone have experience with this school? It was recommended by two child advocates. http://laurelsprings21.reachlocal.net/
  24. Rogue suggestion: take her to the ER at NYU!? My bf is an ER doctor who always tells me that an ER case will always get a bed Just a suggestion. T.Anna
  25. Thanks DcMom. I have spoken with Dr.Storch several times. His opinion is that a teen needs to be "ready"...we will get there but are not there yet. Dr.Storch did not think he sounded ready. USF is a definite choice since I'm in Tampa every few months anyway for work. I have to say that the most encouraging words I've heard were from Beth Maloney. They were simple: "He will get better, he will go to college." The past few days DS had a rough time with thoughts. I have been reading newspaper articles to him (nothing related to illness or shootings though) he has begun to form a very comp
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