PANS HELP | Imamother

amother

Wed, Feb 14 2024, 9:54 am

My 11 yr old had sudden onset OCD 2 summers ago. We have tried the standard antibiotics, seen Dr Jyonouchi in new Brunswick, and although at some points she did improve she has been in a bad flare for the last few months, non stop. Her symptoms are OCD, mood swings, irritability, emotional dystegulation, being down and upset, bouts of dizziness, anxiety, and more.

At this point what should our next step be? I don't have millions to spend on various practicitionets and trial and error. I emailed Resilience Naturopathy to set up an appointment but I see there is mixed feedback about the success rates.

I have no idea if she's suffering from Lyme, PANd or something else we never did extensive testing. Is there a top doctor that we can see that can get to the bottom of this and TREAT successfully (the root, not just the symptoms?)

I suspect that I too suffered from a PANS type of illness, and still do almost 30 years later. I wonder if it's genetic.

All input is appreciated!!

amother

Foxglove

Wed, Feb 14 2024, 10:41 am

Do you know what infections you're dealing with?

Which antibiotics did you try, for how long and did you see results while on it? Why did she come off and did she regress when coming off?

What did Dr jyonouchi say and did she offer any treatment?

What else have you tried so far?

As a fellow p/p mom, I will say that Unfortunately, any top Dr who treats root causes is also going to cost a whole lot of money. And also that there's no way to know in advance what will work for your child. Most people who have recovered their children have had to use multiple practitioners and different modalities to address the many different layers going on.

The good news is, healing is possible. And if you're willing to put in the legwork, there's even a lot you can do yourself. We've done a significant amount of healing ourselves. RN Is not cheap, but will probably give you the best bang for your buck.

And yes, there is most definitely a hereditary component. We pass on our microbiome, our pathogenic load, our toxiciti3s nd our genetic vulnerabilities to our children. The infections that set it off are just the trigger.

Feel free to ask any questions, and hang in there.

amother

Wed, Feb 14 2024, 11:09 am

amother Foxglove wrote:

Thank you. I understand it will cost $ but I can't run around the world to a bunch of diff Drs and dish out tons of $ to each I would like to start with the top and hopefully have good results.

Regarding which infections, we don't have a clue. Dr J never took any bloodwork (she claims it's long covid which she sees in many kids) but how can she possibly know without doing a single test. She's been on various ABX for a month or more , whatever the Drs prescribed. She didn't regress immediately after going off, it was probably a few months later. I wish I kept notes.
Also she does not swallow pills (although at one point she did) so we are busy crushing the pills in applesauce and I wonder if that affects the potency.

Now Dr J prescribed a week of metronidazole to heal her gut and then doxy for a week. We had seen success with doxy in the past but not the last time we tried it. Azithromycin doesn't work at all .

I spoke to a company that does clinical trials of IVIG for free and that sounded interesting but shes very skinny and I doubt she would tolerate it . Plus not sure she's eligible ...

amother

Foxglove

Wed, Feb 14 2024, 11:33 am

If I was going to shell our a lot of $$$ to see a functional/integrative p/p dr I'd prob go to Dr Nancy O'Hara. Other names to look into are dr kenneth bock and dr alain mass. Dr Elena Frid is also good, though slightly less integrative and specializes in Lyme and co. I would do this in conjunction with homeopathy through RN. We're with RN now and seeing good gains, but I don't think it completely replaces the functional piece. Keep in mind that diet and supplements are cornerstones of functional medicine so these are things you and your dd need to be willing to do if you're going to spend the money and want it to work.

Another thing you might want to look into is LDN. There's an online dr who will rx it to a compounding pharmacy, the virtual appt is just 99$. The idea is somewhat similar to ivig, its an immune modulator, but it's a lot less invasive, less risky, and less pricey. And people see really good results. Though it doesn't replace treating infections.

If you want to do some work on your own, do you have a pediatrician who would be willing to run bloodwork for you? You can test igm and igg for the entire laundry list of infections implicated in p/p, and see what comes up. I would also ask for a stool test, an immunology panel, a complete thyroid panel, and food and environmental allergies, a celiac panel, a cbc and cmp, homocystein and methylmalonic acid. If you're in NY and want a "freebie", dr visconti in SI will test for a bunch of infections and also Lyme and co, and he takes insurance. Narrowing down the triggers can also help you choose the best provider for your needs.

(WADR to Dr. Jyonouchi, 1 week of metronidazole won't do much for anyone's gut if yeast is truly an issue. And I agree that you can't just say long covid without testing.)

amother

Foxglove

Thu, Feb 15 2024, 11:12 am

amother OP wrote:

I know I am asking if it's important that we still test for Lyme and confections in the meantime. Meaning if positive for Lyme, would our treatment need to be different?

In theory, homeopathy will treat everything because it addresses susceptibilities.

In practice, most people end up needing more than one modality, especially if there are active infections going on.

You can start with homeopathy and see how far it takes you