Where to go...

[MMWG]

My last post yesterday made little sense, so I am not surprised no one responded. Thinking more clearly today.

 

I am concerned our PANDAS is becoming chronic rather than episodic. We were diagnosed almost exactly 2 yrs ago by our pediatrician. We have had 2 documented cases of strep, and several exposures that were treated with abx. Our ped is very open and willing to try different protocols to find what works best.

 

It has always been my sense that each episode was a bit worse than the previous one, and the one we had when he started kindergarten (not sure if it was strep induced or stress induced) was the worst. We still have some tics and anxiety from it. Now we seem to be in another sort of flare up with resistant and defiance through the roof.

 

As I mentioned in my last post, my pediatrician is well connected and consulted with Dr. M (I think) at a conference last month. I trust him, but do not think we have figured out how to best protect and treat my son yet. I put in a call this morning about the flare up--he usually takes my word that something is not right and ups the abx, since our strep tests tend to come back negative since we are on preventative abx.

 

I am wondering if I should either ask about running some bloodwork/immune panel, as that seems to be becoming standard practice with some of the top pandas docs? Ask him to consult with Dr. M again regarding her advice on other things we could be doing? We are nowhere near Florida, but if I thought it would help, or if our pediatrician thought it would help, I would take him down there to see her.

 

I don't want my little boy slipping away. We have him on adhd meds because he was so agitated and they make him so sleepy he is napping on the couch at 11 am in the morning. I hate it. I feel like I am drugging him and I don't know how much the medicine is really helping him anyway.

 

I feel like I have to know the next thing to do, and I am stumbling in the dark here.

[LNN]

I was going to wait to post, because I'm not sure I have any answers for you. But I can see by your other posts that your stress levels are ramping up and I wanted to at least offer an opinion.

 

In the first 2 years I dealt with Pandas, I was absolutely terrified of every germ-filled aspect of life. I cringed at every birthday party invitation, I said no to Jump Zone parties, I kept DS home on field trips. But I couldn't keep him healthy. Illness and episodes kept coming. We did pex, we did steroids. But no sooner did we catch our breath than something would trigger, someone would sneeze, and the nightmare would start all over again. I started to forget what "normal" or "baseline" looked like.

 

The details of my story aren't important. I had a kid (two actually) who kept getting sick, kept slipping into Pandas behaviors. Aggressive treatments didn't give us lasting remissions (they helped us catch our breath and stay sane, but they didn't give us "wellness"). We had multiple Pandas experts on the payroll. None had the ideas we needed for our situation. I hit rock bottom last fall.

 

What I've learned in the past year is that there was way more to my son's struggles than any single diagnosis or any single germ. There were things his body was lacking (or had too much of) that were keeping him chronically ill. It wasn't just about giving him enough abx. Or doing another round of immuno-suppressive intervention. We needed to address basement-level, foundational, whole body stuff. The single best thing we've done is to start working not with a "specialist" but with a generalist. Someone who blends conventional and integrative medicine and doesn't see a barrier between the body, the brain and the environment.

 

I'm not suggesting you see any particular kind of doctor - there are great DAN!s and not so great, great LLMDs and not so great. Same for integratives, naturopaths, homeopaths etc. But for the kids who keep staying ill, who turn "chronic", it seems that the ones who are pulling out of the nose-dives are the ones who are doing things that support the body rather than suppress it. I'm not talking about the kids who have clear episodes and then clear and prolonged periods of normalcy. So I don't mean to imply that anyone who's not pumping their kid full of pills or remedies isn't doing the right thing. I'm only talking about those kids who never seem to enjoy more than a month or three before the rug gets pulled out from under them again. The ones where those conventional SSRIS and stimulants "should" work but don't.

 

If you feel you're missing something, I'd encourage you to look for a local DAN or integrative and get their feelings on methylation, detox, nutritional testing and support, metals, chronic infections, etc. I hesitate to hit the "post" button because I don't want to sound like a broken record on this new-age thing called methylation. I don't want to come across like I'm criticizing those who are using IVIG successfully. My kids are on abx, we've done all the things discussed on this forum. So I'm not criticizing anyone for anything. Every child has unique situations. I know you love your child more than anything in the world and you just want him well again. I wish I had an answer. I don't. I can only offer that seeing a doctor who wasn't 100% conventional has made a big difference - for my family. So I throw it out there for food for thought. I pray you find answers that work for your son soon and that the awful feeling you have in your gut right now passes quickly.

Best,

Laura

[hootie]

I agree with LLM...my kids are doing supplements, probiotics and homeopathy. This did not protect them from succumbing to

PANDAS this year (first time ever that I know of and they are 12 and 14), but I don't believe it was the antibiotics that

got them over the symptoms...it was the homeopathy (energy medicine). Neither responded to antibiotics but they responded

immediately to homeopathy (within minutes of giving the remedies). Neither received a steriod burst or IVIG.

 

Try homeopathy and also support their bodies with good nutrition, clean water, pure foods (avoid dyes, flavors, chemicals) and

supplement as needed (methylation is very important for sure!).

[hootie]

OOOPs...posted twice so I deleted it.

Edited December 2, 2011 by hootie

[colleendonny]

Ok I'm pretty new here. Can someone fill me in, maybe in a PM, on homeoapathy? I'm very interested and have no clue where to start. Also, what is methylation?

Edited December 2, 2011 by colleendonny

[hootie]

Check out the recent post "10 Month Homeopathy Update"

[MMWG]

thank you so much. i think i needed a reminder that there likely isn't one magic thing that i need to keep searching for. we were lucky that we had a diagnosis at age 4, so since then we have been on top of every bacterial infection within days (sometimes hours!). We have a wonderful pediatrician who is open to my ideas and also willing to reach out to his colleagues who are more expert on PANDAS. I just feel so much responsibility to make sure I am not missing something--being his case manager, his advocate, his mommy, and now his kindergarten teacher as well! There is much to be said for many of the suggestions you all made. Thanks so much. Meg