Doctors' Don't Have Answers

[Jtsmama]

My DS 11 yo, started Clindamyacin in October and we saw huge gains! He was recovering...somewhat. Had a Gtube put in April '11. On Clinda, he started eating, sleeping, tics calmed down, moods were calm, he was happy,he felt great, cooperative, functioning again. Came off of Clinda for 3 weeks at the direction of the ID doc, and he immediately regressed. His Neuro put him back on the Clinda, we knew it worked, he didn't know what else to use. Complete turnaround again. 2 weeks ago Neuro switched him to Keflex. Immediate regressions! The tics are nonstop, ocd is crazy, very irritable, very depressed, doesn't feel good, not eating or sleeping again. I immediately called the Doc to inform, was told to give it a few more days. In those few days, he regressed further. Spoke with Doc today, rather the MA, was told he is not willing to prescribe abx, without evidence of current infection. My DS Myco P Ig has risen since Oct, DnaseB still elevated, and positive for EBV Ig. They only look at ASO and DNaseb. I am beyond frustrated!!

 

My issue is they say they treat PANDAS, one of them being a well know PANDAS specialist. But yet my child is so complex, they don't know what else to do with him. Because he is not like "other" PANDAS patients. He has other rare disorders as well as PANDAS. Now is presenting with Raynauds secondary, something is causing this! So its ok to for the doctors to say, "We don't know what else to do with him?" And then they leave him out to hang, and just let him suffer!

 

Antibiotics are established as the current treatment of choice for PANDAS, or am I wrong on this assumption? Was referred to a DAN doc from a specialist out of state, but the issue is I am a single parent, obviously no $$ tree, unable to work because my son is so sick. DAN docs do not accept Medicaid or insurance. Have any of you had any luck with a DAN doc treating your child, as opposed to your MD or specialist?

 

I apologize for the rant, I am just so frustrated at this point, that people who have the knowledge, are unwilling to help him at this point.

[MomWithOCDSon]

So sorry, JTsmama, and no apologies necessary! You've earned your right to rant! I know how frustrated you are, and it is absolutely maddening that, even in the face of evidence that the abx are helping, some doctors are consumed with the "evidence of current infection" issue. Are your DS's raised titers not sufficient evidence for the doctor of an ongoing infection? Just because it's not on the "surface" where they can scrape it off and culture it, doesn't mean it's not there!

 

Unfortunately, none of the DANs around us accept any insurance at all . . . Medicaid or otherwise. It is strictly out-of-pocket. And I don't know if they will treat your DS in an ongoing manner; I suppose that may vary from doctor to doctor. One DAN in my area specifically states that she does not serve as a "primary doctor," so you still need a pediatrician on your team for standard issues, it appears. That's one of the great conundrums I see with successfully treating our kids; so few doctors are willing to bite off the whole kid, all issues combined, and would prefer you see "specialists" for this (PANDAS) and "a regular pediatrician" for that (standard virus, school physical, etc.), but when your kid's immune system is tricked out, even a "standard virus" can wreak havoc! I'm still searching for that needle-in-a-haystack one-stop holistic care-giver, myself!

 

Not everyone agrees that ongoing abx therapy is a viable response for PANDAS or PANS, and it appears your doc is one of those. Can you get to a doctor who sees the abx as a more viable intervention? My first thought would be Dr. T., though I know he is a very busy guy and may not get back to you as quickly as would be ideal.

 

Try to hang in there!

[Dedee]

Yes, I completely understand your frustration. I recently took my son to a doctor who was supposed to be a "PANDAS" doctor only to be told my son probably wasn't PANDAS / PANS because he didn't have strep (he has positive IgG & IgM for myco p.). We continued to talk for a while before I finally realized that he really didn't get the concept that other infections can cause this illness. His only recommendation was SSRI's, even though my son has an immune deficiency. He didn't even look over the previous labs. So, this really re-enforces my belief that there are only a few "real" PANDAS / PANS specialists out there. As much as I hate to say it, you may have to take a road trip. We recently found out that one of the really great specialists actually takes our insurance even though he is several states away. So our only obstacle is trying to get there in a car with 3 PANDAS kids.

 

I would suggest checking into some of the true "specialist". You may not have to pay so much money if you are willing to take a nice ride through the country. We have seen another specialist in a different area that was also on our insurance. Again, the issue was just the travel, but that actually wasn't as bad as you might think. Clearly though, you need someone experienced in dealing with this on multible levels. I suggest trying to get in ASAP! Best of luck....

 

Dedee

Edited February 6, 2012 by Dedee

[momcap]

Have you ruled out other infections? DS8 does well on certain antibiotics, and terrible on others. He regresses almost immediately and very severely when we stop antibiotics. We went on to find out he has lyme in addition to PANDAS, and possibly bartonella as well. I am CDC positive for lyme and never knew I had it. One of my symptoms was Raynauds. I hope your DS doesn't have lyme, but it might be worth asking a few questions over on the lyme forum. JMO. I really hope you find some answers and options!

[EAMom]

that's weird that you mentioned raynaud's. It'd never really heard of it until this weekend ... it turns out my adult friend with Lupus has it, and my other friend's 14 year old dd (the one with Chronic Fatigue, I recently posted re her) also has it.

 

Anyway, I was wondering if you've seen either a rheumatologist or an immunologist?

 

I have found that the rheumatologist/immunologists we've seen have NOT been fearful of long term abs, like most peds are.

 

I also agree that checking for other infections (like Lyme) is a good idea.

Edited February 6, 2012 by EAMom

[norcalmom]

If your child's mycoP is rising...you HAVE a current infection, a very serious one that is more difficult to eradicate than strep. Clindamycin and doxycycline, and minocycline are good against mycoP - which is why your child probably did well with the Clindamycin. I'm assuming it is outside the normal range and rising. An IgG that is rising is a more positive indication than even an IgM. If you call this to your docs attention, I don't see how they wouldn't treat it, and if they won't - find a doctor that knows what he/she is doing!

 

Mycoplasma is a known cause of pandas, and is cited in alot of the materials *(not just strep).

 

If your current doctor is not taking a rising myco P titer seriously enough to prescribe long term antibiotics, I suggest you find an immunologist, or and LLMD or infectious disease specialist. Mycoplasma is very commonly found in people with Lyme. Is called a co-infection, but it is debated weather the myco comes from the tic, or because the person's immune system cannot fight off the mycoP due to the lyme messing up the kids immune system. (mycoP is common and a heathy person should be able to clear it on their own).

 

I've found that the Lyme docs know their anitbiotics and the immune system very well. Ours is using mixutre of herbs and doxy to combat my son't rising mycop titers - my son's IgG was at 2450, and all the doctors (even Dr K and a stanford immunologist) said that if the IGM is neg, then he most like does not have it he just had a "very robust response" when he did have it and his antiboides stayed high. The only doctor that said that it meant anything was the LLMD.

 

After my own research I decided to have it tested again several months later (and several months after 2nd IVIG) his mycoP was then at 2950. Not everybodies titers are going to be this high. But a rising titer is a rising titer. By the way - my son was on 500mg Azithromycin almost the entire time. At first he did well on the azith but he had pitands, and with every cold he would exacerbate and his baseline would be worse .

 

I really wish we had targeted this from the start. But we had no typical symptoms of mycoplasma. Just like kids with chronic strep or strep carriers, you wouldn't know it until you tested for it.

 

I wish the everyone would test for this along with strep at the onset. Seems sily that they don't. It isn't like Lyme testing (expensive) and if your child has pandas, its one of the know causes - why don't the docs run it with the strep titers - I dunno.

[thenmama]

Very quick reply b/c I've got to run but wanted to chime in b/c my son has needed to stay on Clinda and every time he was switched off of it he would regress-- big time! In his case, his perianal strep would start to flare up almost immediately-- at the same time as all of the PANS symptoms. It started taking longer for him to rebound when switched back on, with our ped rheumatologist said was normal-- for the on/off pattern to impact a med's effect and the speed/oomph of the response when we restarted it. In the past week or two ds, who'd already been ramping up again following a stomach virus in January, had a PANS explosion. He's still on Clinda. We were puzzled by what was going on til he came to me last Thursday night and told me his bottom felt funny again-- I looked and sure enough-- another strepisode-- on Clindamycin! We went to his ped on Friday and she looked up what abx and abx combos to give for the resistant strep. She added Cephalexin, as well, as a short term solution and our doc team is now coordinating to move ahead quickly with his IVIG and T&A. My ds has an immune deficiency and obviously hasn't cleared his underlying infections, so right now the abx are just supposed to hold him over til his upcoming treatments. But, before we'd uncovered all of that and we were treating for PANS with the abx, he had the same pattern of improvement and regression going on and off the Clindamycin as your son.

 

If the symptoms are returning when an abx is stopped or changed, there's a reason for it that needs to be found and addressed.

 

I second the rec to see a Rheumatologist or Immunologist. We've got one of each on our team, in addition to our PANS specialist, and they're great.

 

TH

[cynditk]

What can a Rheumatologist add to your team? And how do you find one who will be sympathetic to PANDAS?