Can this be PANDAS?

[Clockworkangel]

Hi all.  I highly suspect that my 9 year daughter is suffering from PANDAS/PANS. A brief history - my daughter has had chronic strep infection every winter/spring since 1st grade.  February 2019 she got a strep infection, was treated with antibiotics, but had a lingering cough for months after that, enough for me to have her allergy tested in July thinking she has seasonal or environmetal allergies (test said she has nothing of note).  In July things went downhill overnight...her symptoms were sudden separation anxiety, health anxiety (fear of dehydration, cancer, heart attack), fear of elderly people, constant feeling of lump in her throat, intrusive thoughts, urinary symptoms (frequency and pain), pain in her arms, head, and legs, heat intolerance, hyperactivity, and trouble sleeping.  When she was excited or upset she also began snapping with both her hands repetitively. Her doctor said she likely had anxiety and that her pain was simple growing pains.  Symptoms increased through August and October...she was checked for UTI, her thyroid was checked, both were ok.  She developed a painful, bright red anal rash in September which her pedi brushed off as yeast...I didn't think it looked like that, I thought she may be reacting to a food since she has some food sensitivities (gluten and tomatos).  By October she was hyperventilating when getting dropped off at school, was having to reassure herself every morning.  She developed constipation (never a problem for her before) and thus a fear of bowel movements. She could not talk about any of her symptoms or intrusive thoughts without severe panic/hyperventilation.  I started her on an L-Theanine supplement which seemed to help her somewhat.  It was at this time I ran across PANDAS in my research and I felt she fit the profile...I asked her pedi about it but she brushed it off as too controversial.  In late October she woke with severe pain when urinating so I took her to urgent care and had her tested again...there was no infection but a tiny bit of blood in her urine so the doc prescribed her keflex.  Within a day we saw improvement in every single one of my daughter's symptoms.  Within several weeks she was pretty much back to normal, so I was convinced it was PANDAS.

Fast forward to now...in late June she started complaining of a sore throat...strep test was negative.  Her symptoms have all started to come back since then, including some new ones - fear of choking/restrictive eating, fear of me dying, and she suddenly began struggling with her piano lessons. She complains intermittently about her throat being sore with some ear pain and pain/discomfort when urinating.  Her new pedi which is much more open to the idea of PANDAS did some bloodwork for strep titers but those were normal, so she feels this isn't PANDAS.  L-Theanine isn't helping her this time so I began giving my daughter ibuprofen, which at first seemed like a miracle.  After about a week it stopped working too.  Her pedi won't prescribe antibiotics without a positive test, so in desperation I did a telemedicine visit with an online doctor about her sore throat and ear pain and she was prescribed amoxicillin last week.  There was initial improvement in her symptoms (especially the eating issues) and an immediate, profound improvement on the piano, but after 3 days on the antibiotic, her anxiety is worse again and she's snapping much more now.  She's doing online DL for her school and I can hear her snapping away in the loft when she's excited about something. She's back to being scared of being dehydrated too

Does this sound like PANDAS to you all?  I was so sure the antibiotic would help completely, but it seems to be helping with only some things this time. Also, she got upper braces in March 2019, and had her lower braces put on this June 2020. I hear that dental work can sometimes cause a flare...could that have been a trigger for her this time and it that perhaps the reason that the antibiotic is not working as well?  I'm at a loss.  We can't afford the cost of an alternative doctor right now, nor therapy for her...though we can probably swing it in a few months after I start working again.

Edited August 17, 2020 by Clockworkangel
Wrong title

[Cmac]

Wow! I’m really sorry you and your family are dealing with this. It definitely sounds like PANS to me. Have you tested her for anything else besides strep? Myco p? Lyme? My 7 year old had both Myco P and strep in August 2018 as his triggers. We cycled through several different antibiotics (starting with amoxicillin which just barely helped) before finding the right combo for him. It took months for him to get back to baseline and he does have flares from time to time. And yes—teeth can be a big trigger for some kids—it is for mine.

I’d definitely look for other triggers besides strep. Also silly question but your drs are doing a strep throat culture in addition to the rapid when they test for strep, right? Once my son’s rapid came back negative, but culture was positive three days later. Also isn’t an anal rash a sign of strep, too?

Good luck and keep digging for answers! 

[Clockworkangel]

Thank you! I appreciate your response.  I'm just having a lot of trouble finding a pedi who's on board with doing more testing for PANDAS... they all seem to want to hand us off to therapists for treatment. I mentioned Lyme but they don't want to test because she's never had a bullseye rash. And all the the pedis who are known to treat for PANDAS in our area are not taking new patients.

Also, yes they have been sending the rapid strep tests on for further culturing, but they've been negative. Her last positive test was in November last year. She has been complaining about pain in her perianal area off and on this month, but there's no rash ir redness that I can see right now. Can they culture without an active rash? 

[Cmac]

I'm not sure--hopefully someone more experienced than I am can answer the question about a culture without a rash.  I just can't believe it's 2020 and we're still having to fight doctors about taking the possibility of PANS/PANDAS seriously.  I will ask a friend who is way more experienced in this about the various tests you can check/ask for --when you find a pediatrician or doctor who will agree to run them.  Also, lots of good threads here on this board about which tests to ask for.

In the meantime, hang in there! You'll get your daughter the help she needs.

[bws1565]

I would not discount therapy; you can get some on your insurance.  Probably not the best, but something.

For years I have been seeking for a cure-all solution for DD, and therefore did not give her the right therapy or psychotics, I regret that very much now, because we have a compliance issue.

Children who are so highly anxious, cannot develop or grow properly.

I would deal with this from both angles at once.  This definitely cannot hurt.

I was just wondering- was there a vaccine involved here?

 

[Clockworkangel]

Thank you both! I know our insurance will pay for only a few therapy sessions and nothing prolonged, but maybe that is better than nothing. I'll look into it. 

She has not had any vaccinations since her kinder year. We did delay her vaccinations because when she was a baby she had two small seizures in the week following her first vaccination. The neurologist and her pedi recommended we delay vaccinations. I started catching her up at 4 and a half years old in preparation for school... Ironically she was not sick a day in her life until the week after her second vaxx when she got the flu for the first time ever... She's had too many illnesses to count since then (strep, mycoplasma, flu, ear infections, fevers with out any other symptoms). I don't feel like it's a coincidence she never had so much as a cold before I started catching up on her vaxxes.