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Gpookie

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  1. Like
    Gpookie reacted to Atex in My 23 year old who is 13 years PANDAS free with likely recent PANS episode (has had COVID vaccine)   
    Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks.
    For me, when I got my Covid booster in November 2021, an old lumbar spine L4 nerve compression issue that I had (and had not acted up in the previous 8 months) flared within about the same timeframe (8hours) of receiving the booster.
    Not saying not to get the vaccines, but there is definitely an inflammation thing going on.
  2. Thanks
    Gpookie got a reaction from HopeinHIM in will Normal return?   
    I wish I had words of encouragement. What you described is exactly my husband. For 20 years since I met him, he exhibited odd behavior, zero executive function, cognitive deficits and arrogance and ODD through the roof. After I nearly had a nervous breakdown five years ago, he had some psych testing: extreme ADHD and NPD.  However, with his 4 PANDAS kids ( 2 from a previous marriage), I had him tested for Lyme. Lit up like a xmas tree. Also PANDAS.
    His whole life is one drama to the next, yet he sees it all as something being done to HIM, while anyone he comes into contact with suffers. 
    He is being treated for everything, but unfortunately with treatment for Lyme, Pandas, etc., those symtpoms have gotten better, and he regularly goes to therapy, but the NPD (arrogance, self focus, lack of empathy, etc.) Is increasing in leaps and bounds.
  3. Like
    Gpookie got a reaction from tj21 in LD vs HD IVIG   
    We don't know.  We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range.
     
    My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.
  4. Like
    Gpookie got a reaction from tj21 in Antibiotics after IVIG or Plasma Exchange Treatment   
    My kids are only 10 and 9. They've been on abx combo since 2013. They may need then until they are 21.
  5. Like
  6. Like
    Gpookie reacted to jan251 in DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!   
    Clearly, you'd want to look for infections.  I'd set up an appt with your pandas doc (or whoever; really, any doc who will do it) to run some bloodwork ASAP, both for infections and immune system stuff, IgG levels and so forth.
    In the meantime, I'd haul the kid off to the nearest urgent care for a swab and throat culture today.

    It seems to me that this sort of situation is to be expected with PANS/PANDAS.
  7. Like
  8. Like
    Gpookie got a reaction from JenniferG in CVID and PANS   
    My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.
  9. Like
    Gpookie got a reaction from JenniferG in LD vs HD IVIG   
    We did HD on both boys in 20014.  The worst PANDAS symptoms dissappeared over night and never came back.  After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure.
    ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID.  LD monthly (.5g/kg for 6 months, stop 3 then 6 more months)  worked wonders.  No more flares, even when ill and on exposure.  LD was the best thing.
  10. Like
    Gpookie got a reaction from JenniferG in LD vs HD IVIG   
    We did 2 rounds.  Yes, less suck and when they do get sick, they just get normalkidsick....
  11. Like
    Gpookie got a reaction from JenniferG in LD vs HD IVIG   
    We don't know.  We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range.
     
    My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.
  12. Like
    Gpookie got a reaction from tj21 in LD vs HD IVIG   
    We did HD on both boys in 20014.  The worst PANDAS symptoms dissappeared over night and never came back.  After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure.
    ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID.  LD monthly (.5g/kg for 6 months, stop 3 then 6 more months)  worked wonders.  No more flares, even when ill and on exposure.  LD was the best thing.
  13. Like
    Gpookie reacted to mama4 in What is this??pandas, herx or abx side effect?   
    An update, things seemed to have settled down. Two Activated Charcoal caps before bed seem to completely stop the nightmares and finally getting good sleep. Maybe just getting used to the abx or no longer flaring, not sure, but the 2 caps before bed can't hurt. 
  14. Like
    Gpookie reacted to 4Nikki in Stanford news article: Antibiotics have a role in PANS even with no infection   
    There is something wrong about that article. 
  15. Like
    Gpookie got a reaction from EAMom in Could HPV virus be a trigger to PANS/Pandas symptoms?   
    Anything that affects the immune system can trigger PANS symtpoms.
  16. Like
    Gpookie got a reaction from qannie47 in Could HPV virus be a trigger to PANS/Pandas symptoms?   
    Anything that affects the immune system can trigger PANS symtpoms.
  17. Like
    Gpookie reacted to bobh in Strep A not going away on 3 abx   
    If the augmentin/biaxin is a prophylactic dose, it may not be doing the job because it is too low. Alternately, if it is a good strong dose, then the strep got a hold despite it's presence - so maybe your son has a strain resistant to these abx.
     
    Hopefully, the ENT might recommend another abx to try.
  18. Like
    Gpookie got a reaction from jan251 in Restore   
    I have it here. Tried it on myself. Almost no taste, but slight taste of topsoil in water. Did nothing. It seemed like hype/great marketing. I used it as I tested as having no gut flora a year ago and started using it with my VSL3. Restore did nothing for 5 months...
  19. Like
    Gpookie reacted to LNN in Is there any way to make a herx less likely? Serious   
    Gpookie - Wombat is having an anxious reaction to a particular word used in Ryan's post and it triggered anxiety around similar word I used in my post. I've edited my post accordingly.
  20. Like
    Gpookie reacted to mama2alex in Pandas - When to move on to IVIG after trying Augmentin?   
    MC2 and Confusedmom, I'd highly recommend comprehensive testing for any/all infections that could be involved. This is often more complicated than "just strep." A good LLMD can test for all of the following plus: Lyme, Bartonella, Babesia, Mycoplasma, Epstein Barr virus, HHV6, and Candida overgrowth.
     
    Once you've done all the testing and had a comprehensive evaluation by an LLMD, you can really target the antibiotics and make sure you're not missing anything right from the start.
  21. Like
    Gpookie got a reaction from jcmom in Is Magnesium Deficiency the Cause of Tics?   
    I believe your last sentence is largely correct. However, I think it is a combo of true deficiency and malabsorption. 400mg a day took away my kids hyperactivity pretty much over night. We didn't have tics...
     
    Sometimes I think a bad gut is at the root ofcall this....
  22. Like
    Gpookie reacted to qannie47 in Advice. Strong suspicion of PANDAS/PANS in our 7 year old   
    Hmmm. I don't find myself saying this often, but your case sounds about as straight forward a case of Pandas as it can get. If I remember correctly, ear infections can be caused by strep bacteria. I do not think this most recent set of symptoms that started in september is the first episode either. Dr. K theorizes that Pandas is a slow building storm, with minor clues that don't catch a parents radar (like the 3 week hand washing episode..but then it goes away). Think back to any weird quirky behavior, that was Atypical, maybe lasted even only a few days, but then went away. Dr. K's research shows that there often seems to be that BIG Explosive episode right around ages 5-7. Also, once the first Dominoe is tipped over with Pandas, you do not have to have strep to trip off future flares...because the Immune System is now broken somewhat and is producing "misguided" antibodies whenever it is turned on.
  23. Like
    Gpookie reacted to MomWithOCDSon in a message of hope   
    From our experience, maturation -- both physical (immune system) and mental/emotional -- can bring a lot of good things to the party. Especially if you have the supportive relationships and therapeutic techniques and tools in place to help along the way.
     
    Quannie, I really appreciate your "carry a cross of some kind," as it resonates deeply with me. Most families struggle with something at some point -- chronic illness, addiction, dysfunction, financial challenges, etc. I've often thought that, while my DS had a horrible couple of years that really tested all of us, I'm grateful that he remains, at his core, kind, gentle, thoughtful, bright, compassionate, loving and resilient. And all of those best qualities have "rubbed off" on the family, to some extent, making us stronger in the end. Maybe the heavier the cross, the stronger one becomes!
     
    All the best!
  24. Like
    Gpookie got a reaction from jan251 in IVIg dose, frequency, trough levels vs OCD response   
    My kids did great on .5g/kg per month after the HD didn't hold. That together with the right abx combo solved it....
  25. Like
    Gpookie reacted to boysrlove24 in Wondering if anybody has any experience with this....   
    My son's last blood test revealed extremely high IgE results - he was at 1479 and the range for normal is supposed to be less than 480. I can't help but believe this is contributing in some way to his symptoms but I don't know how. Could it be an allergy to mold that we don't know about or food sensitivities or other??? I don't even know what test/s to run to help figure it out...wonder if this allergy therapy would help him?
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