Exhausted, depressed and feeling hopeless

[TracyRee]

Ds has had pandas diagnosis for 7 years. Last three he's been on daily azithro. I can't keep giving him daily antibiotics. I feel a little

Twinge of guilt giving them to him every single time. I feel like they have wrecked his gut bacteria and effect his mood. He's depressed, negative, irritable. I want my happy boy back.

[MomWithOCDSon]

 

So sorry, Tracy.

 

If you've been dealing with it this long, I'm sure you've heard it all, looked into it all, tried it all . . .

 

Just wanted to say, sorry you're still dealing with this, and it can, WILL get better . . . it's hard to see the light at the end of the tunnel sometimes, but it's shining, nonetheless. Just waiting for the obstacles to get out of the way so that you can see it, even if only just the tiniest bit.

 

So, even on the antibiotics, your DS is still depressed, negative, irritable? So, what is it in a positive sense that that abx bring to the table at this point? Maybe it's time to wean him off? Increase his probiotics so his gut biome can start to heal?

 

Hang in there!

[TracyRee]

Thanks. Yes, we have decided it's time to take him off abx. We plan to do that starting in May in hopes of strep season waning a bit.

 

The abx keep him from tics and OCD, but the irritability and mood are not improved at all. If anything, worse.

 

I just can't keep going like this.

[LNN]

There are two things you may want to look into - the first is methylation - a chemical process the body uses to turn raw nutrients (vitamins and minerals) into energy and neurotransmitters. Finding my kids' genetic roadblocks and adjusting supplements (B vitamins and zinc/copper in their cases) made huge improvements in mood regulation regardless of infection or good health. There are lots of posts and links (many from me) on the forum on the subject.

 

The second is using herbs in place of antibiotics. Stephen Buhner is an herbalist who's written many books on using herbal antibiotics and herbal antivirals - especially for treating chronic infections. My DD is allergic to many antibiotics so we've been using herbs with some really positive results - and herbs dont damage the gut the way pharmaceutical antibiotics do. I defer to RowingMom as the resident herbal expert but Alchornea has been an awesome herb for us.

[mama2alex]

I'm so sorry to hear you're feeling this way. As MomWithOCDSon said so well, it can and will get better. It sounds like treating just strep with just one antibiotic isn't working fully, so maybe it's time to cast a wider net in terms of testing for infections, as well as looking at other issues such as methylation, food allergies, heavy metals, mold, parasites, etc.

 

Were you able to get in to see Dr. O or Dr. M, as LLM suggested? I'm sure they could help you figure out what to do next.

 

Hang in there - it will get better!

[TracyRee]

We have an appt for Dr. L in August and are on the wait list.

 

Thank you for the reminder to address the methylation. I do feel like that's a huge part of it and hat we have neglected it.

 

Is there a cheat sheet for those of us in dire need but lacking brain cells to sort through it all?

[LNN]

From personal experience, I can say it's really important to test your genetics before you treat methylation. Guessing is not a good idea.

To start, read POst #18 here http://latitudes.org/forums/index.php?showtopic=3928&page=2

 

If interpreting is too overwhelming, there's a company called Livewello that helps with interpretations, reports. I've never used them but if you search the forum, you can find posts from people who have and maybe PM them for their experiences. You can also PM me if you'd like more links or experiences.

 

Hang in there. Just like Thomas Merton wrote about there being many paths up the mountain of faith, there are several paths toward health. We all just need to find the one that works for us. It isn't always the same path for everyone. But keep at it and you'll find the one for you.

[wisdom_seeker]

Also, have your son carefully checked for residual infections. Sometimes an infection is resistant to one antibiotic yet sensitive to another, maybe simpler abx.

 

My older PANS son in 11th grade had continued having chronic sinusitis symptoms -- overwhelming fatigue, irritability, some post-nasal drip -- even after many months of abx + steroids, even after (needed) sinus and sleep apnea surgeries. Anxiety was super high also, focus down the drain, we were both discouraged. They were not obvious sinus symptoms, and likely not ones that would have been cultured with a simple throat or nose swab.

 

I took him to a sinus specialist (not just regular ENT) who put an endoscope up his nostrils, found an area of infection, cultured it, did antibiotic sensitivity testing, and showed us that the bacterium was resistant to tons of abx even floxacins, quinolones, .... but sensitive to the old standby amoxicillin!

 

10 days on amoxicilin (+ saline sinus irrigations, allergy nose sprays) and he was 90+% better. ... and continued improving.

 

I had been discouraged then as well, because we'd had him on so much, so long, and the surgeries were supposed to have taken care of the issues. Well, they were necessary but not sufficient, and a change to the simple, old-fashioned amoxicillin cured him.....

 

Oh, per our MD's recommendations, we also stuffed him with probiotics during and after abx.

 

For us the key is to really carefully search for any possible sources of residual infections. And for other things that could affect the immune system -- like the sleep apnea (he had never snored, but still woke 15x/hr, had almost no stage III/IV restorative sleep)

 

After he finished HS, had an easier initial college schedule (starting at noon, not 8 am!), he was able to get enough quality sleep to finally be (almost) done with PANS. He's now got a full load in a rigorous school, is social again, and thriving.

 

If your kid has tonsils, an infection could easily be hiding in the crypts in the back, and the zithro just suppressing it somewhat. Maybe it's partially sensitive to zithro, but not enough to cure him.