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Posts 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 bathroom rituals

    SLEEP IMPROVED! He started falling asleep every night before midnight (altho this can be because thyroid too high as well)!

    Hardly cries, rages.


    This was after high dose steroid taper (80mg) and an HD IVIG (#4) on December 13.


    Since then we have somewhat plateaud. We did IV steroids last week (1/8-9/14) and he got of the bathroom faster (14 hours as opposed to over 72 in December).


    We ran numbers and the steroids seem to have lowered his ACE rates, but his SED is still 50. His thyroid antibody numbers have also risen. In addition his TSH, which was dipping since this flare beagn and ended up at 0.010 is now over 7 (way too high), so we have added thyroids meds.


    I just bought the book
    Understanding Hashimoto's Encephalopathy (book of personal experiences) and it sounds like many of our kids.


    We will probably do HD IVIG #6 this week, since I feel we saw the best results in mid December from the last one.


    School Update:

    I gave up on our school and they backed off their CPS craziness.

    I enrolled DS in two courses at Laurel Springs online and DS seems almost excited to try learning science and math again (they have a 30 day money back guarantee and semesters start from enrollment date any 10 months).

    In addition, I found that kids over 14 do not necessarily need schooling as was established in the case Wisconsin v. Yoder (an Amish family), so I'm not too worried about that part.


    We definitely see a saw tooth progress and are still contemplating immune suppressants which are also used to treat HE patients, but I still am hesitant. I heard that a boy around DS's age received Retuxamb (at Mayo) and went into total remission, but the B-Cells (I think I'm saying this right) started coming back and so did the PANDAS symptoms.


    We just added back the oral steroids as Dr.T thinks we plateaud when we stopped oral steroids after the IV and the steroids. We hope that the thyroid med will help too since thyroid issues can cause many OCD symptoms too.


    There is a concern about DS's liver with all the steroids so we will take blood again this week and look.


    What DS is taking: Augmentin, Valtrex, Minocycline, Flagyl, Nystatin, Prednisone (tapering down at 40), Thyroid (cannot remember name) & Supps: Japanese Knotweed, Olive Leaf Extract


    Vitamin D - DS's 25-Hydroxy is 13.3

    DS has always been in a bad mood when taking D3 supplements. This time we also measured CALCITRIOL (1,25 di-OH Vit D) which is the active use of vitamin D in the body (from what I understand).

    DS's levels were normal which the doctor said is quite common is PANS kids...they have low levels, but are believed to use it functionally, and more needs to be studied in relation to vitamin d.


    CALCITRIOL (1,25 di-OH Vit D) is 38.5 normal range is 10.0-75.0


    That's about all I have right now. His Coxsackie numbers are still at 8, His mycoP is still high as is EBV, but strep is finally under 200 (182), everything seems to be trending down except the thyroid stuff.


    Thanks for reading this far.



  2. 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.



  3. <<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 had something to do with it.



  4. 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 siblings to let him do their homework, so we think he's ready, but that's different then having your own responsibilities.




  5. 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 difference)

    May 2013 - Run Moleculera = PANDAS highly likely, Very high CAM KINASE II

    JULY 30-August 3 - 5 PEX Pricedures - no noticeable change

    SEPT 2013 - HD IVIG

    OCT 2013 - HD IVIG - start seeing more flexibility in changing clothing

    DEC 2013 - HD IVIG - starts responding to push from us to clean (hoarder) and changing clothing more frequently. Walks around the house more, makes himself food, no restrictative eating. Most improvement we have seen so far.

    JAN 2014 - IV Steroid (last week) Maybe more energy, but seems to have returned a few restrictions in food, too early to know.


    He tests positive for Hashimoto's Encephalopathy, has elevated SED and ACE.

    He is on Augmentin, Valtrex, Nystatin, Flagyl, Minocycline. Supps: Japanese Knotweed, Thyroid Support, Olive Leaf Extract


    We are seriously considering starting Laurel Springs online private school this week (just need to get him on board).

    Thinking of doing another HD IVIG next week and possibly going the CellCept route..


    Luvox was horrible, Rispedral did nothing.


    You are not alone!!!! We all feel that way : / Especially as others are getting lerners permits and our home life is NUTS.


    Hang in there this too shall pass!




  6. 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?



  7. 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,




  8. 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.


    PEX done 7/30/13-8/3/13

    On the way home from hospital he wishes he was dead. DS just as non functional as before. Lays on the couch all day (used to get up and move around the house), eats only a few things on certain days and goes to the bathroom Sunday night to Monday night (then gets to 48hrs, 72hrs).


    A few weeks after PEX we do HD IVIG #3, no real results. In the meantime we have discovered elevated SED rate, ACE levels and Hashimoto's Encephalopathy. October 23, HD IVIG #4, still not much improvement. But able to convince him to change his clothing, and he's having trouble keeping to his Sunday night bathroom schedule as he has to go more often. Still keeping to OCD eating schedule and laying in the couch. December 13, HD IVIG #5. Goes into the bathroom and stays there almost 80hours, but is able to get out when we threaten that we will take him to the hospital. A week later is able to get out if bathroom with our putting pressure on him after 5 hours. He is moving around the house more, eating everything all day (cooking himself food). He helped me clean up the hoarding and organize his and his brother's room which he hasn't gone into in months. He still has miles to go, but we finally see progress in feet and not inches. What could be helping? He's on 80mg steroid burst, Augmentin XR, Valtrex, minocycline, FLAGYL, nystatin.


    We also never saw any improvement from standard immune modulation, but maybe the PEX cleared the way for the HD IVIG to work??


    He is still very very homebound, now sleeping in my bed (ughhh), etc.


    Our real dilemma is whether to go down to DUKE in 3 weeks or do IV steroid here first.


    So the moral of our story is that something IS working now. My biggest fights with DS the past few days is that "you want everything to be fixed, right away!" (In DS's words), he's right. I'm more impatient now that there is progress than I was when he was in such bad shape that all I could do was watch him and pray, not sure why that is : /


    We know we've come a long way, since he now uses the sharp knives we used to hide in our bedroom.



  9. 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.



  10. 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?).



  11. 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.



  12. 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 comprehensive understanding of politics and world events. He also has a deep understanding of Obamacare and it's failures. My point, is that his brain is mending, his memory and empathy are back, he just needs to shake off a few more things. I'm just wondering about the gut.


    Would anyone suggest trying FLAGYL for 10 days and seeing if things improve??



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