Newly diagnosed w/PANDAS, teen with a history of tics, OCD, ASD, anxiety. Are we on the right path?

[KSandy]

It's all so overwhelming, but I'll try to keep it as brief as possible. I know the road to healing looks different for everyone, but I value the community here and I'm just looking for some feedback/support.

Background:

My daughter is 13 and has had motor and vocal tics since she was four; they change in nature and wax and wane, although lately, they're at the worst they have ever been.
At age 4 she was given antibiotics for candida albicans overgrowth...the pills given to her had to be crushed up and mixed with food which she hated. We struggled and had a lot of really terrible moments where I felt I was forcing her to take the medication and she just couldn't make herself do it because of the taste. I have a lot of guilt over this and I didn't know half of what I know now about gut health. I don't know if she ever fully recovered from the yeast, although her external symptoms cleared up. 
Around age 9 she developed some very specific OCD behaviors that were focused on intrusive thoughts and rumination.
In 2020 she began to struggle with compulsive hand-washing and constantly feeling like her hands weren't ever clean enough. (Thanks COVID).
Since reaching puberty, her anxiety has gotten a lot worse, especially social anxiety.
She has been officially diagnosed with general anxiety, OCD, TS, and ASD. 

Present:

She sees a therapist once per week and we have both noticed an improvement in her anxiety because of this.
We now see a neurologist who has diagnosed her with PANDAS and she is starting cefdinir tomorrow.
She's taking omega, iron, and vitamin D supplements based on results of lab work.
She also takes milk thistle, NAC, and inositol.
Lab work also indicated inflammation. 
I had her tested for food intolerances and she showed high IgG reactions to gluten, eggs, and dairy so we are starting a strict elimination diet today.
We already use hypoallergenic and chemical-free cleaners (thank you Force of Nature).

Future: 

I'm going to have her start taking digestive enzymes and L-glutamine for gut repair.
I'm having her gut microbiome tested with a stool analysis company called Flore; they will also create custom probiotics for her based on the results.
I'm going to test our home for mold, we have only lived here one year but there appears to have been water damage at some point (I'm scared of the results because we cannot aford to move right now).
We will be going back to our chiropractor once per month like we used to (she uses the Torque Release Technique).
I'm starting her on curcumin for inflammation, as well as the antioxidant resveratrol.

Other random thoughts:

She has had chronically chapped/dry/peeling lips since she was very young. Could this be related to candida? 
How to heal if the gut microbiome results point to SIBO?

Edited March 26 by KSandy
added info on supplements

[Chemar]

Hi KSandy

It certainly sounds like you are following a good track! I don't have enough personal knowledge to comment on specifics for you, but I do know my son (dx TS with likely PANS component) showed tremendous improvement with cleaning out Candida albicans! We used capsules by NOW called Candida Support (used to be called Candida Clear) and had good results. As Candida is fungal (also sometimes called "Yeast overgrowth") I know some of the prescribed antifungal liquids have had mixed reviews.

My son's OCD always ramped up when his GIT wasn't happy. He still uses plain natural organic kefir as his probiotic, as he did not respond well to those probiotic supplements. He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues. The Integrative doctor started him on NOW Boswellia + Curcumin which he still takes and finds beneficial to both GIT as well as neurological impacts.

We know the brain-gut connection all too well, so always advocate for the treatments that aim toward healing both. We found regular medicine just doesn't address that, and frequently prescribed treatments just upset the balance and result in new issues - at least that was our experience.

So kudos to you for following a holistic approach. I do hope your daughter will heal well.

 

[KSandy]

On 3/27/2024 at 8:47 AM, Chemar said:

He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues.

 

Thank you so much for your reply. May I ask, what led you down the path to his Crohn's diagnosis?

[Chemar]

My son was experiencing pain and digestive distress. The doctor suggested an endoscopy/colonoscopy as they suspected Crohn's, and it was confirmed during the examination.

[MaryAW]

Yes, get the RealTime mycotoxin test for mold. Also try giving liposomal glutathione prior to the test. My daughter had all zeros on her first test because she could not detox the mold at all. After the glutathione the numbers went way up!

Make sure to check for Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection).  Also check IGg levels to be sure she can fight whatever she has.

There is a lot more info out there now, so read up!

Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon.

Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org