What do we do now?

[Satara]

Hello everyone,

 

I don't know what to think/do. I don't know if what he has is PANDAs or systemic candida (which he tested positive for and can cause neurological symptoms) or what the heck is going on. We have a fantastic naturopath who has him on supplements/a chelating agent (he tested positive for lead and arsenic), nystatin for candida, omegas, a natural anti-inflammatory etc. We have definitely seen improvement. He no longer has psychotic episodes where he thinks everyone is out to get him and the mood swings are getting better. He does have rages but they are much shorter lived and not nearly as extreme (we can always track them back to food (too high blood sugar/emotional triggers). He is doing well in school. It's funny because it's hard to know what is 'normal' moodiness/bickering between brothers because we are on hyper alert any time Liam starts to get agitated. We went to his cousin's birthday party yesterday and his cousin was way more moody/sullen and crabby. It makes us think we need to stop hyper focusing on Liam.

 

I don't know whether to push for antibiotics because they would be great if it is PANDAS but we know he does have a yeast problem so it would make that worse. All the things that trigger his rages feed yeast which makes me suspicious that that could be the problem but I'm not sure what to do.

 

What has your experience been with dealing with PANDA(ish) behavior?

 

Cynthia

[LNN]

Since you're seeing improvements and you have a lot on your plate already, my advice would be to not add too much more into the picture until/unless progress becomes questionable. You're right - yeast can cause at least some of the same symptoms as Pandas and metals can as well. Personally, I'd treat these things first and see what, if anything, is left. (of course, I don't know why you initially came to a Pandas dx, so that might change what I'm saying).

 

In my experience, several things contributed to a whacky immune system and neuropsych symptoms. By treating a few of them, my son's behaviors and symptoms have improved significantly and what feels like more permanently. So it's like emptying a bucket until it no longer overflows. Metals are a fundamental issue, so tackling that could take you very far.

 

I know it's natural to want to protect your kid on every front. But given the risk of making the yeast worse, maybe talk to the naturopath about natural anti-bacterials and anti-virals to offer protection instead of going down the abx path just now. One other idea - some natural anti-bacterials are pretty nasty smelling/tasting. Our LLMD has had some success getting some of the powdered supplements he recommends into capsules, using a compounding pharmacy.His pediatric patients find it a lot easier to take things this way.

 

Hope the yeast and metals treatments go well!

[Satara]

Thanks, I came to the PANDAS site because he had 14 out of 16 of the symptoms I read and his sudden onset. There are so many possibilities. My one fear is that if it is PANDAS we will miss the window to give him the abx (we probably already have because he has been symptomatic for almost a year). I will ask about a natural abx. Are you thinking of goldenseal? I've been on it a few times and it can taste pretty nasty. Same with oil of oregano.

 

Cynthia

[smartyjones]

hi satara -- you're story strikes a familiar chord for me, so i will tell you our story -- it certainly may not be the same for you.

 

ds had sudden onset 3 years ago. of course, we had no idea what was up, but knew it was something. our pediatrician was useless. many, many people said, "oh, it's jsut a phase.' and "he's just being a boy" NO -- this was not a phase. a person i worked with suggested yeast b/c she had yeast issues herself. we were seeing a behaivoral therapist who i discussed the possiblity of yeast with. she suggested pandas and suggested titer testing, which were high for ds. in the meantime, ds was seeing some improvement with naturopathic treatment but not really dramatic. we did a short course of azith, which was disastrous -- all troublesome behaviors came back with a vengenance. we switched peds, who prescribed 30 days of keflex. i asked for nystatin b/c i was concerned about yeast issues. the naturopath also ran food panels and ds was highly sensitive to just about everything. the naturopath did not want me to do the keflex, rightfully citing that the azith had been so troublesome. i just felt we needed the abx.

 

so, unfortunately, we did it all basically at the same time -- abx, nystatin and GF/CF. ds had 100% remission in about 3 days of starting the abx and nystatin. i can't say for sure, but definitely believe it was due to the abx.

 

you do have a lot going on. . . but if you're leaning to abx, you could ask to nystatin also.

 

good luck.

 

sorry -- just read that you have him on nystatin -- i missed that at first. when i did ask for that -- ped did with no problem and told me that for himself, if he has abx, he does a rotation system of nystatin and diflucan. diflucan can be intense but may be something to consider some alternating for yeast meds if you do want abx.

Edited September 27, 2011 by smartyjones

[LNN]

Thanks, I came to the PANDAS site because he had 14 out of 16 of the symptoms I read and his sudden onset. There are so many possibilities. My one fear is that if it is PANDAS we will miss the window to give him the abx (we probably already have because he has been symptomatic for almost a year). I will ask about a natural abx. Are you thinking of goldenseal? I've been on it a few times and it can taste pretty nasty. Same with oil of oregano.

 

Cynthia

I didn't have any particular natural supplement in mind - there's a whole group that my LLMD is trying to get into capsules. So it's only a suggestion that if there's something your doctor thinks could help but it comes in an unpleasant form, there are ways to get some things into capsules.

 

The more I learn, the more I realize that there are indeed many things that cause similar symptoms. Mercury toxicity causes brain fog and excessive urination and mood issues. Yeast can cause ADHD, hyperactivity, impulsivity, rages. Tick borne illnesses can cause a whole laundry list of symptoms. There's so much cross-over that it's really really hard to be objective and zero in on one or two primary causes. That's why I like the idea of the body being a bucket. Add one or two issues and the body can cope. Add a handful of issues and the body overflows with a cascade of symptoms, creating even more opportunities for viruses and bacteria to set up shop. It's likely that once you're sick long enough, it's not possible to find "one" problem that will fix everything. It's more likely, IMO, that you're looking at the need to peel things away until the bucket isn't overflowing anymore. Treating some things makes a bigger dent that treating others, but the thing is that you need to pick a starting point and methodically start bailing water. That's why I recommended focusing on what you've already identified as problems. Addressing metals and yeast could take enough load off the body that the body could then handle strep and other infections in a normal way, without long term abx. If you try to treat too many things at once, you never know what, if anything, is working.

 

I strongly disagree with the idea that it's ever "too late" for abx. There is no window of opportunity that closes. I defy any doctor to show me cases where a child went untreated and was forever unresponsive because it was "too late." There are too many stories on here of kids who were mis-diagnosed for years and who are now responding with whatever has been the "correct" treatment for their particular situation. Do certain illnesses like lyme get harder to treat if they're chronic? Probably. Can certain things like metals poisoning cause permanent cell damage - probably. But I like to believe that growing brains have the ability to create new pathways and I refuse to be a pessimist. I hate to read the panic when parents feel they're missing one shot at getting their kids well. We all want to get this past us quickly so our kids can have healthy, joyful childhoods. In that sense, there is an urgency. But I personally don't feel that if "too much" time goes by, your kid is doomed. It hasn't been my personal experience anyway.

 

IMO, your metals issue is far more imperative than anything that can be addressed with an antibiotic. If you rid the body of heavy metals, the body may be able to handle other things on its own or with far less aggressive treatments. But take all this with a grain of salt. I'm coming from a perspective of having dealt with this for 3 years and only now coming around to minerals and metals and finally seeing great results (long term abx help my son but weren't sufficient by themselves). You ultimately need to follow your gut. My answers aren't necessarily going to be your answers. Best of luck with your decisions.