New PANDAS mom pursuing treatment. What Do You Wish You Had Known?

[IcedCoffeeMama]

Hello,

This is my first post, but I have been lurking here since April when we started putting together that our 7 year old ds' symptoms was more than just misbehavior. Working backwards, I believe that the inciting event was over a year ago about a month before he turned 6. He was diagnosed with both strep and impetigo, had a horrible rash and was put on amoxicilan and mupirocin. The next day his behavior shifted drastically. He was not himself. I scolded him for being mean to his younger sibling and he cut off a chunk of his hair. He was in a ridiculous state after, laughing uncontrollably and inappropriately. Making crazy faces. Dark mood. Didn't seem to care about any consequences. Overtime things improved, but this winter he had multi[;e strep infections in a row and his symptoms escalated. His math skills declined, his handwriting got worse (messier and drifting). My son who is normally empathetic, kind, introspective and a rule follower, is like a different person when he's infected, he's in this state he doesn't make eye contact (he normally does in conversation), there's a sort of wild look in his eyes, has trouble managing even the smallest disappointment, increased anxiety, rages, sometimes restricted eating--says he's not hungry. Rarely eats much for breakfast. Has a fear of trying new things (even foods he's had liked before.) I could go on and on. 

Things have largely improved since his 3 course of amoxicillan in a row. He's had a few minor flares that we haven't been able to figure out the trigger of--allergies? overheating? his younger sibling being sick with a fever? We are awaiting his blood work and the results of his EEG, but the partial panel that we did showed elevated strep titers and the sleep study that we completed showed sleep apnea. His tonsils are constantly swollen so we are pursuing an tonsillectomy, adenoidectomy. Since his symptoms are largely better right now the neurologist we're seeing, who specializes in PANDAs, said she doesn't want to put him on a long term course of antibiotics to avoid him developing a resistance but I'm worried about him not having antibiotics before and after the surgery. If you have pursued the T&A procedure, can you please share what you did re: antibiotics? And anything else you wish you had known when you started this journey.

Thank you for taking the time to read this. 

[laure]

In a nutshell, I wish I had known that constant strep infections can caused by the body's weakened immune system - in our case 6 months of treating  PANDAS, suffering ups and downs,  led to testing for Lyme and co-infections, which came back positive for Lyme, Bartonella, Ehrlichiosis, West Nile Virus, and eventually Babesia.  I am grateful our PANDAS Dr. tested for Lyme after a terrible herx reaction to Augmentin. 

[Gpookie]

Test the immune system early one.  Treat aggresdively and don't forget to detox as lack of detoxing can make it look like treatment isn't working....

[IcedCoffeeMama]

2 hours ago, Gpookie said:

Test the immune system early one.  Treat aggresdively and don't forget to detox as lack of detoxing can make it look like treatment isn't working....

Thank you for responding! This may seem like a very basic question but are there certain things we should be asking to be tested for? 

Just got back initial bloodwork. Elevated titers for Strep and DNAse. He had basic blood work done within about a week and his strep titers went up about 100 points. Is that weird or not? His last positive strep test was 2 months ago. He's been swabbed probably 3 or 4 times since then. 

No exposure to Mycoplasma or Epstein Barr. Low Vitamin D. The doctor forgot to order the blood tested for Lyme, so we're going to do that. Should I ask that he's tested for other tick-bourne diseases? Anything else I should be asking for? 

And what do you mean by detoxing? Weaning off antibiotics for awhile? Sorry, very new to this and trying to educate myself as best as I can!

[IcedCoffeeMama]

On June 30, 2017 at 7:43 AM, laure said:

In a nutshell, I wish I had known that constant strep infections can caused by the body's weakened immune system - in our case 6 months of treating  PANDAS, suffering ups and downs,  led to testing for Lyme and co-infections, which came back positive for Lyme, Bartonella, Ehrlichiosis, West Nile Virus, and eventually Babesia.  I am grateful our PANDAS Dr. tested for Lyme after a terrible herx reaction to Augmentin. 

Thank you for responding! Wow. Was there a specific panel you asked to be tested for or did your doctor have an inkling? We had our first appointment and our doctor is just running the preliminary stuff. We're feeling grateful that his symptoms have largely subsided after a very difficult period, but it seems that the treatment approach for us at this stage is wait and see what happens and then attack it aggressively to avoid antibiotic resistance. 

[bws1565]

I wish I would have known more about LYME.  My DD symptoms matched Pandas, but she was eventually dx'ed with Lyme/Bartonella.  In her case bartonella  caused the bulk of the troubles with a weakened immune system due to lyme, inhibiting her recovery.  Amoxicillin is the first in line for Lyme, or doxycycline for older kids, so if your kid has Lyme the antibiotic will help for the first while 

[mama2alex]

Like others, wish I'd known that Bartonella, Lyme and other tick-borne infections can cause the symptoms of PANDAS/PANS - and that's with or without strep in the picture. It's actually very common. Also wish I'd known about all the havoc mold can wreak if you have Lyme & co-infections. 

Best lab for Bartonella is Galaxy Labs, IMO. Best lab for Lyme and others is probably Igenex, though my son and I ended up needing to do Advanced Labs' culture test to get a definitive test result on the Lyme. 

A regular (mainstream western medicine) doctor probably won't order those labs for you though. Best to see a Lyme-literate doctor as they know everything to look for and most, if not all, have seen PANDAS/PANS kids by now. 

[Sirena]

I totally agree will mama2alex. You kiddo sounds just like mine and Babesia & bartonella has been--so it seems and th bottom of all this horrid mess. Some other things I wish I knew or did earlier--got Cunningham panel, give Walgreens does the best job of flavoring meds. 6 year olds can learn to swallow pills which makesl life easier.

l

[bigmighty]

I wish I had known how helpful anti-inflammatories are while searching for a more permanent solution.  Turmeric capsules 2x daily reduce inflammation enough to help DS cope when he has an exacerbation.  Ibuprofen helps, too, but not as much.  I wish I had known that a steroid taper can help verify that systemic inflammation is the cause of the symptoms (behaviors diminish or disappear entirely while on a high enough dose of prednisone then re-emerge as steroids are reduced.