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Everything posted by T_Mom

  1. THANK YOU for posting this!!! I think this is worth posting as a topic theme--Wow--What blessed reassurance and encouragement !!! Thank you Dr. Swedo and thank you Maryaw!!!!
  2. Great information in the posts above. My youngest d had IVIG and the first time it had a VERY positive effect, then two years later she had IVIG again and this time her symptoms became worse. She then had pex and it helped a great deal. She is much, much better 6 months later. I think asking Dr Elia is a great idea, and/or pursuing additional autoimmune testing to rule out any other identifiable autoimmune issues. I appreciate especially the "Grand Rounds" video posted by PowPow. As parents really need to ask the treating docs to run the tests which might shed light on whether or not there is an identifiable autoimmune basis for the neuropsych issues experienced by our kids. The response to immune modulating treatments is key. Dr. K recommended the "trial" of steroids -- and if there was a reaction THEN IVIG...that made sense 5 years ago to me, and it still makes sense... Our experience has been that both daughters had pex and yes, in our situation it did help.
  3. Hi beerae22, We have dealt with eating restriction with both daughters. Both have had severe anorexia episodes associated with their PANS symptoms (OCD and ticcing.) Like your child,our daughters never "tested" positive for strep or elevated titers. (Though both tested high with the Cunningham test results for "high PANDAS" when in exacerbation -- and low when not.) Both of our daughters became so severe that they each were almost hospitalized for anorexia. When treated successfully for PANS (with antibiotics, IVIG, pherersis--different episodes -- different treatments) their "anorexia symptoms" faded away. I would still encourage you to seek the support of doctors associated with an anorexia clinic that uses the Maudsley method (evidence based researched and proven effective.) This was a HUGE help to our family and helped us restore their weight, which in turn supported brain health. Is your daughter's BMI at a dangerous level? Has she lost a significant amount of weight? Does she "qualify" as in the dangerous under-weight category? If yes, then you need the help of an ED clinic. On a practical level, I would suggest small meals/snacks every two hours, if she is drinking Boost that is a good sign, but she needs more to get well again. It is a GREAT sign that you are seeing a positive change in neuropsych issues with the antibiotics! That is very encouraging-- I will also pm you--
  4. I feel like our daughters may benefit from Autoimmune testing. If you have had this type of testing done could you please share the tests (and doctors) that you had them with? --for example, Hashimotos and other AE testing? Thank you--(pm is fine too, thank you!!)
  5. Now that message from Powpow made my day!! Spring has nothing on this Powpow -- Thanks for standing firm and steady for your children and providing them with answers...despite setback after setback, you and your family are incredible.
  6. Dr Murphy in Florida -- PANDAS researcher and treating doctor at USF recommends Omega 3 (only -- no 6 or 9) and to find one that is primarily EPA . Nordic Naturals makes a EPA Extra -- 1000 mg a day is her recommendation. I have started "sneaking" liquid Omega 3 (mostly EPA) by Nordic Naturals into my younger daughter's foods--for both daughters I think it seemed to help post-episodes. -- calming to one, though my oldest says she thinks it activates her...so she stopped it totally.
  7. Erin and T-anna, these posts are really good to read, and encouraging. Keep at it (I know you will) and keep an eye on the trend, not the moment, or even day. What AE tests and where have you had them done may I ask? thanks--
  8. Sawtooth pattern of recovery is recognized as standard for a PANDAS or PANS recovering child. Basically means that we as parents need to prepare ourselves for ups and downs--a lot of them ! As once an effective treatment is done , even if "recovery" is happening, there will be ups and downs -- the TREND over time (a lot of time -- as in months to a year ) ...the TREND is what you must watch for -- and by a trend in behaviors (or lack thereof!) by such a trend you can be encouraged !...Keep a record , rate each day objectively -- and watch for the week to week changes, not daily changes! Recovery takes time. Our daughter is on Augmentin and Azithromycin -- that is it right now -- she has managed to avoid all colds or illness even with family members having been ill.
  9. She had been out of school since the previous March! She is now about 95% again -- doing sports and able to function!!!! Our family -- like so many, had been greatly affected but the past WILL NOT dictate our future!..., Both my daughters had severe episodes with typical PANS symptoms -- and both had pheresis. It took us 4 to 6 weeks post pheresis to start seeing obvious glimmers of hope of change--and then slowly, week to week they recovered. In our experience it is a full year to get fully "back" -- I hope your experience is the same-- please come back , find this thread, and post your outcomes in 6 months-- My best to you --
  10. Jackalibeth-- I saw your questions on this thread earlier today and PowPow's comments and wanted to add our experience -- especially as I started this thread in the summer with a question I can now answer! . -- this thread started as a rather desperate mom (me!) had just gone through essentially the hardest year of her life with a raging, house destroying OCD episode with a 13 year old d. If you look back you can see we were desperate for a long time--as severe OCD and tics morphed to raging ODD, aimed at the family ... My d had a similar episode 2 years prior and IVIG had an awesome effect -- then when we tried it a second time , last year, which was two years later-- she became worse with IVIG...so we did pheresis in June (soooo thankful for Dr L!!) I started this thread July 2 as I was worried -- post pheresis .. Our experience since that time had been the "typical" sawtooth recovery , as she has shed the raging, the OCD , the violence towards us more with each passing week. She started back to school in Sept,
  11. Rachel, I am so sorry for what your son has been experiencing. Has he seen a PANDAS treating doctor ? How was the diagnosis made? From the description of his symptoms have you considered seeing Dr Gallentine at Duke? Duke has an autoimmune encephalitis designated "clinic" and they are actively treating -- I am sure you must be seeing a group of specialists. His symptoms sound like AE but not necessarily the PANDAS type. Still, IVIG may be used for AE - but if it is AE he needs treatment ASAP as I am sure you know -- by someone knowledgable in this most serious illness --
  12. I am so sorry your son is going through this, and also sorry for you and your family. What caused the seizures? Is there an explanation for that? We have had PANS experience and lyme with two daughters over 5 years. However, I am reading "Brain on Fire" (which is about a young woman, Susan Callahan, journalist with NYP, and her rare form of autoimmune encephalitis included seizures.) She had a rare form of autoimmune encephalitis, which was very serious. Because seizures are not "typical" with lyme or PANDAS -- I thought I should mention that seizures can be associated with brain encephalitis and must be treated. Has he had an MRI and been seen by neurologist? My best--
  13. If you are looking for effective CBT and a group that understands PANS (if it is PANS) go to the Rothman Clinic in Florida, incredible 3 week program.
  14. We have been through the eating disorder issues with two daughters-- I would urge you to confront this with counseling via an eating disorders clinic in your area that uses the Maudsley method (research based and effective!) Given your daughter's age, anorexia is VERY rare and could well be an indicator that she has PANS or PANDAS. I would also urge you to read the website info on www.pandasnetwork.org as they have names and contact info for doctors who TREAT and that is the only way you will get help needed for PANS. In my opinion, you have enough indicators to ask for a month of antibiotics, and try and see if they have any effect -- that was our first clue, along with a steroid burst via Dr. K protocol, which our local neurologist was willing to try. Please don't wait to treat her with everything you can-- I remember Dr Leckman saying to me (years ago now) that we really don't know the effects of long term brain inflammation, and to treat asap. Don't be afraid, just do it.
  15. Yes, Dr. K. Cantor in Rockville, MD is a pediatrician who you can talk to about PANS and is supportive of Dr L's work. pm me if you need more info--
  16. Our first IVIG the effects started showing within days, and then it was week to week improvements. It takes time to heal, but if it works you will know. Good luck--
  17. If you can get to Dr L -- or back to Dr K, someone that knows how to make a diagnosis and then treat appropriately that is the only way you are going to get any help. I wish you the best of luck, we have all been there, having gone to doctors who said, "no one is 100%"...as my d continued to tic... ...you must go to someone that is knowledgeable of the most recent and up to date research.
  18. I truly hope you are able to get some relief... It is exhausting and a nightmare for everyone involved. Seems to if Advil is having such a dramatic effect that you are dealing with obvious inflammation and need to bring out the "big" guns to stop it. Is it Dr L you see? -- hope so
  19. We have had 2 very serious extended raging episodes, OCD-connected raging for months, two years ago, and then this past year during another exacerbation. Both times, immune modulating therapies finally helped bring my d out of it. S he is now, having lost another year of life, now coming out of it again--after plasma pheresis. The first time, IVIG brought her out of it. She is 4 months post pheresis and finally, thankfully, returning to herself with week by week improvements. For us, the rages were serious, out of control, with no provocation, no warning, and always OCD connected--once triggered the rages did not stop no matter what we did, tried, etc. We spent a great 3 weeks with the team at the Rothman Center post plasma pheresis. Our therapist was incredible--an amazing young woman. Our d was "open" to it, and able to be encouraged and supported by the therapy received there--still, it was a "help" at that point, a very important help, but the physical aspect of her healing had to happen first in order for her to be available to the therapy. Do I believe the rages were physical in nature, absolutely as we have seen them melt away post IVIG or pheresis.
  20. Has anyone had their child tested for anti NMDAR encephalitis? If so, can you please tell me the name of the test and if widely available? (ie., Quest/Labcorp, or does it have to be through a specialty lab?) Thanks!!!
  21. Have you considered trying a steroid burst with Dr L? If you see a good result that may help you for a period of time, and may indicate if a further immunomodulating treatment might be helpful (IVIG for example.
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