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  1. Like
    PowPow got a reaction from T_Mom in 100% Ritual Free in Six Weeks.....CBT/ERP Works!   
    This is wonderful news. I am so excited and happy for him and your family.
    This program sounds great.
    In 2012, i had a daughter at rogers in wisconsin and another daughter received three weeks of daily intensive therapy at USF Rithman center ( then under Dr Storch's) direction. Both were a huge help to each child.
    Micheleb, i am going to be frank with you... If you child has to be forced to either place (rogers or tampa) he is not ready for therapy yet. We had to deal with severe OCD on the way to Rogers (driving from DC area without speaking, chewing, a blanket over her head, no seatbelt, raging) but she still was willing to go. Also, they had to legally sign themselves in. If she refused we would be sent home(she was 13).
    They must be willing to do therapy or it will not work. At Rothman, my other daughter was not participating at first and Dr Storch was considering sending us home. I was devestated. We had pretty much moved and high water to get her and I there (making life with mom gone for three weeks- husband's work, other kids, etc) thankfully she relaxed and gave it a shot and it was highly successful.
  2. Like
    PowPow reacted to PowPow in thoughts re: scary sensory integration puzzle in newly Dx son?   
    It sounds like you might be describing a "cotard delusion"- which can vary from thoughts of missing body parts to thinking you yourself are a corpse. I would second the brain on fire recommendation and also recommend looking past pandas and at the many causes of AE. My daughter did not have cotard syndrome but had other psychotic thought processes that were alleviated by aggressive autoimmune treatment.
    Here is a short article:
     
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695744/
  3. Like
    PowPow reacted to PowPow in Neurotransmitters?   
    My daughter takes low dose (25 mg), anafranil and it is a huge help to her. We just tried to switch to celexa and my daughter (almost18) insisted she had to go back on it. This is a great med for ocd and anxiety and is often over looked due to side effects. It is important to check levels as my daughter has been too high on it and that can be serious.she has been on it, at varying doses, since 2009.
  4. Like
    PowPow got a reaction from mmiglio in Luvox?   
    my daughter's luvox experience was disastrous. however, it was not the"go slow and start low" dosing recommended by Dr Murphy.
    we have found some help from OCD using clomipramine. my daughter has been on it for a few years.
    clomipramine can also have a slight anxiolytic effect, so that may help her too.
  5. Like
    PowPow got a reaction from kakrpa in Auto antibodies actually showed up.   
    Ophelia!!!!!!!
    how did you finally get these results? When w ere they run?
    I am so sincerely happy that you may finally get some answers, and some treatment.
    can you go back to the AE alliance. Org website and do some searching there?
    thank you for posting here to share with us.
  6. Like
    PowPow got a reaction from kakrpa in Auto antibodies actually showed up.   
    you deserve answers. I am so glad you did not give up.
  7. Like
    PowPow got a reaction from tj21 in INTRUSIVE THOUGHTS?   
    sunlight: yes. one daughter got pretty severe burns to her cheek not longer after starting it and sittinf at a baseball game. she is quite fair, though. the burns were more than an average sunburn and required prescription cream to heal. we were much more careful after that.
    stick with 25 mg for a while, at least! (like 6 weeks maybe?)
  8. Like
    PowPow got a reaction from tj21 in INTRUSIVE THOUGHTS?   
    also I would give it longer than a week before your give up on it!
    risperdal helped moderately in rages for my oldest daughter.
  9. Like
    PowPow got a reaction from tj21 in INTRUSIVE THOUGHTS?   
    ditto the erp, trintiybella.
    and please consider some low dose psych meds, maybe a tricyclic antidepressant.
     
    maybe those abx are not doing anything... if I recall she is on a ridiculous amount of meds, right? do you have some kind of anti-inflammatory in the mix?
     
    she seems to be suffering so much with so many varied ssymptoms. have you considered starting from scratch with a new professional opinion (s) & a clear slate, med-wise?
  10. Like
    PowPow got a reaction from tj21 in INTRUSIVE THOUGHTS?   
    my daughters found great relief from anafranil for ocd and anxiety, even at the 25 mg dose. they are both now off it.
    good luck to you tj21. I think it is a good med for pandas and probably very under-prescribed. my children had many interventions simultaneously with the clomipramine, so I ccannot attribute everything to itt they both felt it was very helpful at even that low dose.
    they are now 17& 15. the older one was on it in some dose or another from 2009 until last week - @ doses from 25 mg, all the way up to 150mg back to 25mg, finally. the younger one was on it from 2010 until 2013, never increasing past 25 mg.
    best wishes!
  11. Like
    PowPow got a reaction from theotherbob in Is one of the symptoms of PANS brain fog/zoning out?   
    I would suggest the opposite. I would definitely ask for an eeg. a seizure might change the way pans symptoms are treated or even help uncover a different diagnosis.
    just my $.02
  12. Like
    PowPow got a reaction from Hrosenkrantz in Questions for those of you who did IVIG   
    my daughter gets IVIG /solumedrol monthly. She goes to school the next day , usually.
  13. Like
    PowPow got a reaction from tj21 in Autoimmune Encephalitis   
    https://aealliance.org/clinical-care/grand-rounds/
     
     
    This is the video.
     
    Autoimmune tx my daughtr is on:
    Monthly iv steroid, 1g/kg ivig
    Cellcept
    Plaquenil
    Baby Aspirin
    Augmentin (fron pans doc- previous to ae diagnosis.
     
     
    I think they recognize pandas, but they do not treat pandas, if you will. They are looking for (&i am grateful they found! ) lab or clinical evidence of autoimmunity. Pandas tx helped but nothing "held", like you wrote, agnes26.
    Thereare clear distinctive levels of severity among kids on this forum. I'm not downplaying any child suffering. But clearly there are some children that are so severely affected there is something else going on. I do believe that pandas is related to this. In fact I have four children affected. the most ssevereis the one who has the AE diagnosis. Another with clear cut pandas better after plasmapheresis and ivig. the other two have been treated with steroids and abx and are better. So, odds are, they are all affected by something similar.
     
    As far as triggers for onset or exacerbation, I suppose anything could trigger it. At this point, I am just glad she is getting better and are focusing on that.
    I no longer have the patience, time, money or mental energy to search for that needle in a haystack. I am very thankful for where she is now and moving forward with that.
  14. Like
    PowPow got a reaction from T_Anna in Response to IVIG - Questions   
    Ditto on all of bradsmom comment.
    My daughter , after continual monthly ivig, cellcept, solumedrol and rituximab has very few symptoms remaining.
    The psychotic-sounding fits of laughter are gone and have been for months!
     
    Def pans (or AE) & not an IVIG symptom.
  15. Like
    PowPow reacted to MMC in PANDAS physician in Raleigh/Durham, NC area   
    Wow, this is an old post, first one I posted on here in fact on 2009. Brought back some memories, mostly bad, but that's ok. Our son is now 16 and a half. We have seen several doctors over the years. He is currently being treated at Duke by Dr Van Mater (Pediatric-Rheumatology) and Dr Gallantine (Pediatric-Neurology). They combine efforts and expertise to treat kids with autoimmune encephalitis. PANDAS/PANS falls into this category. Duke does not really recognize a PANDAS/PANS diagnosis, but if they can find evidence of an autoimmunue condition that is causing Encephalopathy, they will treat it. Treatments could be IVIG, IV steroids and any number of prescriptions they may use. We have been going there over a year now. Our son is better, but still needs treatment at this time.

    Dr Latimer in Bethesda, MD is an excellent PANDAS/PANS doctor. Start with her, if you need to. She treated our son several years and eventually pointed us to Duke...which is nice since it is only a 50 minute drive for us. We live just North of you. I will also PM you and offer contact information for myself or my wife. Look for this in the messenger inbox at the top right of the Forum. Also, here is a link to the aealliance at Duke...

    https://aealliance.org/
  16. Like
    PowPow reacted to smartyjones in educational testing   
    please give good ideas of specific educational tests.
     
    has anyone actually done the rey complex drawing test? can that be done by a school or is it a more complex neuropsych test?
     
    are there specific tests that can test out sequencing issues?
     
    thanks.
  17. Like
    PowPow got a reaction from Hrosenkrantz in PEX and illness   
    my daughters' had plasmapheresis a total of three times between the two of them. The one who had been sick the longest, and was very severely affected took a solid month to see improvement. Prozac also made her much much worse. She takes clomipramine.
    Pex was only a temporary fix, but I will take any remission they could get from this horrible illness. Besides the temporary help, this also give us the evidence that we need, and other doctors have needed, to finally find and treat the underlying condition. It was evidence that this truly was autoimmune in nature.
  18. Like
    PowPow got a reaction from Missmom in Symptoms after eye exam with dialation   
    I have a friend whose daughter had seizures (and possibly other behavioral symptoms, I cannot remember) after eye dilation and I think she really felt they were connected. I might be able to connect you via email, if you like.
  19. Like
    PowPow got a reaction from T_Mom in Pandas Physicians Network website - who knew?   
    Wow. Thank you to this foundation (which must have a real person behind it somewhere:)
    clearly created by a wonderful, tireless advocate for our children!
  20. Like
    PowPow got a reaction from lovemylittleguy in Summary from AE Symposium 2014   
    https://aealliance.org/international-symposium-on-autoimmune-encephalitis/
     
     
    and the actual document:
     
    https://aealliance.org/site/wp-content/uploads/2014-Symposium/2014-AEA-Symposium-Final.pdf
     
    Hope someone finds this interesting, exciting and helpful! I sure did
  21. Like
    PowPow got a reaction from Ellen in Update From Ellen's Son   
    Gary, it wonderful to hear from you. My daughters' were on your kids website and found it very helpful. One daughter made a friend through it and was able to share her PANDAS experience with someone who knew what she was going through. That website was really a blessing to her, at the time- she was 11 or 12 and PANDAS (as you know) really stole so much of her childhood. She watched severe PANS happen to her sister, and then one year later, it struck her. The website gave her a place where she did not feel alone. Thank you so much for that.
    You are clearly a very talented photographer! I especially like the bridge photos, they are really beautiful. I will definitely share your link and will support your business.
     
    Keep us updated on your business and again, Gary, thanks for what you offered my kids through your website! It is an honor to hear from you on the forum.
  22. Like
    PowPow got a reaction from Hrosenkrantz in Hate to give seroquel but...   
    If she is not sleeping (on all these abx and supplements) then it seems they are not going to help her sleep.
    Give her the seroquel!
     
    She gets minocycline, amphotericin, bactrim and valtrex? Is one doctor in charge of all of this?
     
    this seems like a lot, especially if it is not helping!
     
    Have you tried backing off any of this, whether combinations or single medications to see if there is any change.
     
    Sleep is imperative for her brain to heal, her sanity and yours.
    Consider that the seroquel may be only a temporary measure-- who knows how long, but give her some rest.
  23. Like
    PowPow got a reaction from PhillyPA in Rituximab   
    Why do you not think it is HE?
    Duke has been very successful for my daughter. Sit tight- this all takes time. My daughter had improvement from pex, but it took a month and was only a relative improvement. This happened twice (pre-Duke).
    They know what they are doing, I know it is so hard, but hang in there.
    If you want to communicate privately, feel free to pm me.
    I am sure they told you but most forms of AE take 18-24 months of proper, consistent , aggressive tx.
    It sounds like she is getting that level of treatment.
    thinking of you. How old is she?
  24. Like
    PowPow reacted to SSS in Autoimmune Encephalities   
    Thank you for sharing that Deedee, I understand.
    It was our LLMD when we went back last month (after a very long break in treatment for dd) who asked we see a specific PANS specialist, hence our appt. next week.
    Filling out the PANDAS/ PANS packet/questionnaire for the upcoming appt., and looking again at a written history I put together, was enlightening.
    My dd also continues to 'ramp up' when exposed to illness, saw it this Spring when her little non-PANS sister kept getting different illnesses from school. But, she wasn't on any prophylactic or treatment antibiotics, etc.
    I find one of the most stressful and difficult things about this illness is just how much serious decision making is left on the Mother (and some Dads who guide the treatment decisions.)
  25. Like
    PowPow got a reaction from cobbiemommy in What has been your experience w-IV abx?   
    My daughter did no better with IV abx, She had Rocephin for about 4 months. It was a PICC line in her left arm. She had Lyme and Babesia.
    In fact, she worsened dramatically during that time period. Hard to say it was the rocephin, but I was very suspicious. These antibiotics are powerful drugs and have the capacity to influence neurotransmitters. Considering that there is very little reliable testing to determine the offending neurotransmiiter(s) in PANS , nor to determine if an excess or lack of said neurotransmitter if the problem, I think this situation could be ripe for danger.
    My daughter became truly psychotic while using IV rocpehin- at about the 3 month mark. She did not recover from this psychosis, even remotely, until she was given high dose oral steroids 3-4 months later. That improvement was dramatic.
     
    as to your specific questions:
    PICC place in Oct/Nov 2009, IV rocpehin daily or maybe 5 x week, until end of feb/beg of March. Psychosis began mid- Feb. She did not recover until Dr L began oral steroids end of May 2010 (first time we saw her)
    Insurance paid for line placment and all meds/supplies for 30 days - all the cover for Lyme tx.
    After that we were on our own. The hospital system I am employed at has an employee discount- I was able to purchase rocpehin at cost. I found a homehealth care company, run by a friend of a friend, who provided me with supplies at cost. (I was lucky!) The changes must be done by a professional (at least an RN)- we were able to handle that ourselves and with assistance from a friend when we needed mutiple hands- but it was still a very expensive deal. I think the Rocephin would have been like $3K /month without my discount . the LLMD charged about $100 a week for the changes by her nurse, but I, thankfully, did not need that.
     
    How is she now? She is great- but not from the IV abx. She has her autoimmune disorder treated by a very aggressive and intensive team and is doing great- like 90%. Literally.
    I see you wrote she has hashimoto's-= has this been treated completely and ruled out as the cause of whatever symptoms she has now?
    I am not trying to add confusion to your decision on IV abx. I just want to share what happened to our child.
     
    The IV abx, at most, created a psychotic disorder, and at the least, did not help the disorder. Thorough, consistent and repetitive autoimmune treatment saved my daughter.
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