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Posts posted by PANDASmcnuggetsw/fry/coke

  1. Tiredmom...I did not know the connection immediately either. The the lights went on went we saw an immunologist that said it takes at least 20 days for the body to mount a defense to a vax. I went home and looked at our calendar and it was 20 days exactly from vax to flip of switch PANS.



    My son had the chickenpox vac. and exactly 21 days later he got sick and was just not right, and has not been right since, and we are now on the "pandas journey" I have asked all of the dr. that we have been to if this could be a reaction to the vaccine, and most tell me that it is not likely given that the symptoms were not immediate. Myself and my mother are convinced that this is a reaction. Needless to say, my younger son will not be getting any further vaccinations until we figure this out...whenever that may be!

  2. Since coming back from Rothman, I've had lots of ideas swirling around in my pea brain :-) and today I am reading all about vax injuries and stunned to see OCD, encephalopathy and rhinitis related to her HEP A vax and others she has had in the past.

    So...if the infection of myco-p has cleared I thought maybe we should see a doc who knows something about vaccine injuries and how to treat them. What type of doc would this be? Biomedical? DAN? others? What is the difference?


    She does not have autism, but the more I read about vax, I am just sickened as to the adverse effects, how similar they are to her current state and the ingredients in them. Thanks! :)



  3. LLM~


    That is fascinating. I have never heard of that. She has been on N-AC for over a year, but not the Mucinex. I'll look into that and your articles.



    Thank you for the input on the taper. May I asked who did it for your son? There are no doctors around here that are PANS literate, but maybe someone else could help us out.




  4. T.Mom,


    It was Rothman that ordered it so wasn't Dr Latimer (and I forget which other Dr that does it) There were a lot of tests, including C3D Immune Complex and Immune Complex Detection by C1Q Binding. These were the two that Rothman seemed to be focusing on, indicating "plasmaphresis and further IVIG would not be helpful." She did have one out of 6 phospholipid antibodies termed "EQUIVOCAL", meaning not in the positive or negative range. I am not sure what that means.


    As for abx, she was on them for almost 2 and 1/2 years and b/c she was still suffering so much ON them, I had no problem trying a go without them. I see no difference without them and it has been a few weeks off.


    I am thrilled to hear how well your daughter did after the plasmapheresis. Was it done by Dr L? Perhaps we should go get another opinion...




  5. We have recieved lots of bloodwork and results after Rothman and there does not appear to be present infection. I think we finally killed the myco-P that had been there for so long after 2 1/2 years of ABX! We have two ivigs behind us and no one wanting to do it again. (Docs don't think it would be helpful at this point) Her bloodwork/immune panels don't show that she would be a good candidate for plasmapheresis or continued ABX. So we are off the abx and doing CBT and lo dose ssri for the very first time. Docs at Rothman were adamant that when this all hit at age 12, it was PANS certainly.


    Here's my question~~ she only did the 5 day steroid burst for Dr k before her first ivig and never did a longer taper. I'm wondering what makes a person a good candidate for a longer 30 day steroid taper. Or does it seem like the docs say, well let's just give this a try. (She does not have asthma btw. re recent scary post about steroids!)


    She is 14, not exacerbating, but still entrenched in intrusive thought OCD, that would make a mom consider openning her own wrists...:-(

    The ssri is helping some~ it has only been about 6 1/2 weeks, but I have always wondered if we should attempt a longer taper.


    She also is allergic to a few things which we didn't know before and CT scan shows sinusitus after 2 1/2 years of abx~~ maybe that is all allergy? We are supposed to see an ENT now, but I have no idea what they would do...


    Thanks for any suggestions!


  6. I did see a site that documented a link between Hep B shots and autoimmune illness and one of the specific symptoms observed from the autoimmune illness was neuropsych symptoms. I'll try to find it tomorrow...it's getting late here.

    Ours was Hep A. and Dr K and Dr T saw it as a nexus to her illness, especially given the timing. I also found on a vax injury site that Hep A and B caused similar injuries, but it was more vague.



    Is there a specific vax you think triggered it all?

  7. PANDAKID11,


    I am so sorry your son is struggling so much. It can be so agonizing to see your child suffer so much. I don't remember seeing your son’s total history, but it sounds like strep is your culprit? Everyone is answering on the basis of what happens with strep as you get older. Of course it’s not just strep. Our daughter is 14 and has never showed one strep infection in her life. (I know hard to believe) but we have a pretty good record of her medical history. For her it WAS a vaccine, which lowered her immune system, letting Mycoplamsa-p waltz right in and set up home for several months. And during this WAMMO, not even overnight, but like a flip of a switch during the day, a sudden and severe PANS onset. That was at 12, right before puberty. There was even a time while she was on the basketball team where overnight she developed a weird gait to her run. That lasted a few weeks, then disappeared just as quickly. It was almost painful to watch her play, but she didn't seem to notice it. Now she is going through puberty 2 1/2 years later and we just did the Florida program and trying a low dose ssri.....just to tell ya where we are now.


    So to answer you question, does puberty end it? For us, no, but we are out of the exorcist woods and thankful for that. We are being as aggressive as we can on this short of plasmapherisis I think. Which we may still do, after we receive results from blood work we have just completed.


    But, I would say that things are looking up. I have hope that this will be a vague and unpleasant memory one day. I am having more and more confidence that she will kick this “stuff” off her land and get healthier and healthier over time. My prayer is that you keep this hope up for your son as well. It feels like total darkness now, I know...but it WILL get better. Even when it is not perfect, it will get better. Get your rest and take care of yourself so you can be strong and show him those signs of hope. :)


    Pandas McNuggests w/fry/coke

  8. We stayed at the East House Just got backlast Saturday. We were supposed to be at the West, but got in at 11pm after flying all day. It worked out great and we stayed there although they said we could switch to the West if we wanted to. We also had a back up reservation at Courtyard and cancelled that after visiting. It was a very low rate given to us by RMH. But the experience of RMH was well worth it. No fits by daughter here, but I know if she had one, they would have rolled with it just fine. We gave the RMH some bouncy balls b/c they needed them at thier playground and they have a therapy dog~~a black lab that is just awesome!!


    East house is easy walking distance to Rothman also.

  9. WARNING...diehard homeschooling parent here...Nothing below is meant to offend anyone! Read at your own risk! ;)



    Similar to POWPOW and MOM Paisley, we have always homeschooled our 7 children prior to our life with PANS. It is unbelievable to me how this school has proceeded in your daughter's case. She is your child, YOU have the right of decision-making in her education. It is your right to homeschool her should you choose to exercise it. Like others have said, homeschooling is not for everyone, but I think we can all agree that no one loves your child or has their best interest at heart like you do. There may be just a season for homeschooling for some families. Of course, each family needs to decide what is best for their family and children in their situation.


    I could not tell if you are interested in going this route for the long haul, or just during this very difficult time {{hugs there}}. Regardless, you have received lots of good info here. Another place to find lots of info about homeschooling with a summary or link for your state laws....


    Homeschooling A2Z Home's Cool Curriculum, Laws, Programs ...





    There is a lot of info here about curriculum styles and choices available out there.


    I could talk all day about homeschooling, but I won't do that to ya! :) I'm a curriculum junkie. Whether your view is for the short or long term, I just would not stress the academics at this point with DD. Just get her home, stop fighting with the school and give her all that love and attention she needs. With the one on one tutoring that hsing affords, you do not need to worry about falling behind. There are some outstanding curriculum choices out there, whatever your family values may be. Also, feel free to PM me any questions.


    I hope things calm down for DD and your family and that you have peace about your decisions.

  10. It was one week, trying to cram as much in as possible. Double appointments per day etc. I think so much more came out in ERP~~ it was just overwhelming.





    Did she do the intensive 3 week program, or just go for medical testing/treatment? If you did the 3 week program, I'd love to hear additional feedback if you are willing to share. We are considering heading down there soon to address school anxiety/refusal. Sorry to hear she's sad after the visit. Any idea why?

  11. We just got back from Rothman. Yes the RMcD House was wonderful and I'd do it again in a heart beat. It is so good to be home after the hard work done at Rothman.


    Agnes26 are you on the board these days? We just missed you by a day I think. I'm hoping all is well.


    No clear answers for us yet, but lots more bloodwork and ct scan to do. The docs there say classic PANS for DD originally, but now that she is chronic, need to treat like regular OCD (ERP and SSRI) while continuing to look for infection.


    Also, switching to a new abx she has actually never tried.. minnocin. After 2 and 1/2 years of abx I thought she had tried them all!


    DD seems sad and quiet after her time there. This was no picnic whatsoever.

  12. That's interesting Beeskneesmommy. Our DD also shows strong symptoms when people in the home are sick. And even the apparent common cold! I recenly took her off the abx after 2 yrs and 4 months of it, b/c the OCD and suffering were still so strong while on it. It was a high dose too. Now that she is off of course, there are many colds in our home and she got one too. Worse OCD and sorry if TMI, but while everyone has regular goobers, hers are a starburst orange color.... :wacko:

  13. It's been a long while since we checked for myco-p, strep and the usual culprits and it is probably time we get them all checked again. ( STILL trying to get hold of Dr T., but that's another story) Anyway, I wonder, can you have no infection generally and still be left with the PANS, severe OCD symptoms? Really, since my DD's original exacerbation in 5/2012 she had all the classic PANS symptoms, the frequent urination, the OCD, the separation anxiety, the deer in the headlight look, etc.


    Now we are left with severe intrusive thought OCD of the worst kind. But I wonder if it is possoible that there is NO infection anymore, just a wacked out immune sytem that left us with this yuck. Ok.. not a scientist here,but is EVERYBODY on this board assuming that we must have some type of infection, strep, lyme, myco etc for PANS symptoms to continue?



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