Approach for kid

Hi! I used to post here a lot but haven’t been here for a long time. Still appreciate all the support and info I found here, and the great people.

Wanted to get your thoughts on situation with youngest kid.

Kid is 9. We lived in mold for most of his life, and he also got Lyme along the way. (Actually I think he got it in utero and was later reinfected.) We’re out of mold now, he’s treated with herbals for years, and I’m really conflicted on adding abx.

He doesn’t feel sick—he feels great. Lots of energy, happy, doing great with school (homeschooled currently). His presentation is PANS type. He has flares with intrusive thoughts, fears at night, repeating words and phrases, sometimes saying off-the-wall things. That stuff comes and goes, and flares have gotten much less often now that we’ve been out of mold.

There are some constants though. His social skills (esp. conversation) seem several years younger. No filter, conversations are mostly just recitations of facts that are interesting to him. He also has not slept alone since separation/ divorce/ move two years ago—too afraid. Difficulty falling asleep is another constant, though melatonin helps with that. Also fairly constant: ADHD type activity, impulsivity and strong interests/obsessions.

The big dilemma is that I don’t know how much of this is residual from so many years of mold exposure or if he still has infection lurking.

Took him to my doctor whose abx protocol helped me tremendously, and they think it’s worth treating him. But since he feels good and is thriving otherwise, I’ve hesitated starting for months.

On the one hand, if there’s still infection lurking, I know it’s damaging to the body and I don’t want it to crop up later when it’s harder to treat, school is harder, stakes are higher and emotions are stronger. But on the other hand, I also know we can never get rid of it all, so is there value in possibly stirring things up now and hitting his gut with abx when he feels good? And what if it’s all just from the mold? The lack of knowledge drives me up the wall.

One more point—he’s kind of tired of taking drops and was on board with starting abx in the hope of being done with it. Ex husband is also currently on board and I don’t know if that will last.

But what if we start and he gets worse? What if I take a happy kid who feels good and open this box of who knows what?

On the other hand, what if he grows up, gets sicker, and wonders why I didn’t do more for him when he was little?

Any thoughts?

Post Edited (Dahlias) : 2/24/2022 12:40:40 AM (GMT-7)

I'm so sorry to hear that he's having such a tough time in some areas, but what a great thing to have a happy kid who feels good! I definitely understand not wanting to risk that. It's so hard to see our kids struggling in some ways and not know exactly what's wrong or how to help. It's great that you can homeschool and therefore be more responsive to his needs. (We homeschool, too!)

Has he had any treatment or concerted guidance about how to manage anxiety? My child also struggles with anxiety, and I know it can be so heartbreaking and frustrating.

Has he been evaluated for autism yet? He sounds like many kids I know on the spectrum. It's amazing how much the proper support can help families and folks with ASD, so maybe it's worth considering given the symptom profile you described and how common ASD is. Reciting facts he finds interesting instead of two-way conversation, no filter, social skills lags, strong interests, severe anxiety, sleep difficulties, repeating words, etc. are all extremely common autism features.

Being on the autism spectrum wouldn't necessarily mean that infections and mold don't have a role to play, but if his brain just works a certain way, then occupational therapy and coping skills for anxiety could be hugely beneficial, especially while he's still young and his brain is more plastic.

If there have been changes in the brain, then detoxing and antimicrobial treatment alone probably won't change them, unfortunately. Therapy and other resources (kids' mental health workbooks, guided meditation recordings, yoga, social skills groups, etc.) could give your family more support and options while you deal with whatever might be underlying or exacerbating these symptoms.