If you could make a list for a pediatrician

[Plum99]

My daughter hasn't been diagnosed or treated for Pandas/ Pans or anything else. The wait to see a specialist seems to be long, but that is still my goal. In the meantime, my daughter just had two weeks of antibiotics for a urinary tract infection, and she has had amazing results and has come back to life in so many ways. I had my follow up for her infection today, with a new pediatrician who we had only seen a few times. In previous appointments, before finding information online, we had talked about referrals for autism evaluations for both of my kids. Things got worse and then better with my daughter in between. I went in today prepared to plead for more antibiotics, and to feel him out for how receptive he'd be. To my surprise, he had a blurb about Pandas printed out, and I pretty much cried and hugged him and didn't stop talking until the office was closed. Here are my questions for anyone who has any insight.

This guy is an awesome person, and I can see he wants to help. He doesn't know about Pandas or Pans, and already said a lot of things that let me know he doesn't really get it, but he can order labs for me, and was eager to take notes to change the original labs he had written. I wasn't prepared for this at all, but I remembered I read something about the Cunningham Pannel, and blurted it out. He hadn't heard of it, and wrote it down. Was that dumb and totally not the right thing and should I not even be asking him for that? I want to get every bit of information that I can, and I want to be able to take it to whatever specialist I go to. Since the conversation kept falling back to bringing up things like Zoloft, and then me bringing up the antibiotics helped the symptoms, so I don't think I want my 3 year old on Zoloft, and then we were back to but if it's not Pandas- I just let it all out and said I want to see someone about bartonella and mold and I want every test I can get because I know this is what is going on, and no one is going to make me believe any differently now that I have once again verified the antibiotic connection. He wrote it down, but I don't think he knew what to do. Are there tests I can ask him for that signal any of it? He said you can't test for mold. I really have no idea. I just told him that there are these people online, and they know everything, and I'm going to ask them what I need.

He gave me another week of Penecillin. He also gave me a child psychologist he wants me to consult with, and a neurologist, who he said knows Pandas. Should I believe this? I feel like part of me didn't trust that a neurologist that my insurance covers would solve the problem. I'm also concerned because she's not in the peak of her symptoms anymore, and I am constantly feeling like I have to defend myself if they don't see it for themselves. Do I just not bother with all this, and wait for who I think will be the most helpful, or is a neurologist someone who is going to be looking at what I want?

Surprisingly, the pediatrician and I had another item on both of our lists, and that was chromosome testing. I don't know much about it, but I just felt like there was some things in common with mthfr, and he seemed to think that was important, along with fragile x. Is there anything in this kind of test I should be asking for or looking for?

Really, I'm all over the place with what information I've taken in, and it has been so much at once, there are a lot of things that are probably obvious that I need spelled out for me.

If you were in my position, what exactly would you be asking for, bringing up, anything at all. I suggested a different antibiotic, but I didn't have anything to back it up, and it made me look bad I think. I just know that she has tested negative before, and we were able to get antibiotics anyway, and the symptoms still got better.

[MomWithOCDSon]

Ours was one of the rare families here on the forum who were able to get some PANDAS/PANs help from our regular pediatrician, but I will tell you that, in our experience, not only can they feel overwhelmed by what they don't know, when you start hurling the "kitchen sink" in their direction, bringing up everything from mold to lyme to MTHFR, etc., and throw in "I read it online" to boot, most mainstream doctors are going to start either looking at you cross-eyed or begin to roll their eyes when they see you coming and dismiss even your most legitimate concerns/ideas as those of a desperate mom who just can't bring herself to admit the fact that her kid(s) is autistic/bipolar/developmentally delayed/depressed -- you name it. I get the temptation because I did the same thing initially, and I know it's hard, and all this just sort of "happened," but you'll probably help your kids and yourself best if you slow your roll at least just a little bit.

 

Getting to a specialist is your best, most efficient course of action because they'll be knowledgeable themselves about "next steps," and it won't all be up to you. Not that mold or MTHFR aren't part of the puzzle you'll need to sort out, but your DD's positive response to abx would seem to suggest an infection, and that's a good place to start, I would think. A PANDAS/PANs specialist is likely to order blood work (a full immune panel); I'm not sure if the Cunningham panel is currently readily available, but someone else here on the panel can likely speak to that.

 

As for MTHFR, you will probably need a good integrative or DAN! physician to help you sort that out, as not even PANDAs specialists, so far as I know, are really well-versed in that. Testing-wise, you could order the 23-and-Me genetic (I think you called it "chromosome") testing on-line, but you'll need help interpreting the results. You can search "23-and-me" and/or "MTHFR" here on the forum and find a lot of information, primarily via our member LLM, who's developed something of a specialty along those lines.

 

Finally, if in the meantime -- or for the longer term, due to accessibility and other considerations -- you'd like to try and keep working with this willing-but-"newbie" pediatrician, I would do what I could to help him get up to speed. I made a hefty binder for our pediatrician in the beginning of our journey, with every piece of literature and research I could source from here on the forum and elsewhere. Throughout various topics threads here (I would probably start with the pinned threads at the top of the forum) you can find links to both peer-reviewed research papers and less formal documentation that could help your local doctor. I also gave mine a copy of "Saving Sammy." And pandasnetwork.org is another excellent resource for information and research for your or your caregivers.

 

All the best to you!

[Gpookie]

Perhaps ypu could have ypur ped call one of the pediatricians on the PANDAS network list?

 

Our pediatrician from day 1 has been a godsend. (Dr. Baig in Maryland). Quick diagnosis, available at a moment's notice, on top of things, cultures the boys every time he sees them whether we ask for it or not. I would say a good day pediatrician has been even more valuable than Dr. L. (though she is also fantastic).

 

Most important I find is that your pediatrician listens, researches and can cooperate with you and other specialists. I would NOT recommend a throw-everything-at-it approach. A good pediatrician will separate the PANDAS issues from immune issues, from allergy issues, from nutritional issues, etc.

 

One thing I love about our pediatrician is that he only ever prescribed a medication when it was targeted ( i.e. the specific strain of bacteria matched with the very specific antibiotic or other treatment).

 

He listens, knows his meds and does his research, and in general, all the things that make a good doctor good. Just my two cents.

Edited July 30, 2016 by Gpookie

[Plum99]

I'm not trying to avoid going to a specialist. I just want to get antibiotics and whatever else can help me from this guy while I'm waiting. I wasn't even going to bring it up, and was just planning on straight up asking for more antibiotics, but he already had the Pandas information printed. But when he started saying things that weren't true, like no doctor will look at her about this if she isn't positive for strep, it was hard not to respond with information, because obviously I know that is not true. When I started referring to Pans, and then said, and if it's not that, then it's something like it. Something is happening to her that is helped by antibiotics, so there's something there- that's when I let it out about Lyme or mold or something else. When he said there's no test for mold, that's why I thought maybe I should be straight up telling him what tests to run, because I do not believe he will keep giving me antibiotics without something showing up on a test, but I do believe he believes there's something to this. I wasn't going to bring up the mutations until he had the chromosome test next on his list to suggest. I just got excited that we were both thinking the same things, but I'm still not totally educated enough to know what to say about it. He did have a neurologist he wanted to send me to who treats Pandas, and she is affiliated with Stanford, but she isn't the one I was planning on going to. I will take people on this site's suggestions on doctors any day over any pediatrician, because I have been shown in the past that they do not all care to get to the root of the problem.

I guess the most important thing I'm looking for, if asking him to run specific tests isn't the answer, is how do I get him to find something so he can justify giving me antibiotics while I wait. I know he's willing, but possibly just doesn't realize that he might have to dig. I like the idea of making him a binder with information. I think that will help me show him that I'm not trying to invalidate his doctor suggestions when I go to a different person, even if in addition to his. I think he might actually be interested.

[mama2alex]

Here are some tests that your pediatrician can probably run, so you have the results ready for your specialist appointment:

 

For strep - ASO and Anti-Dnase B

Immune function - IgA, IgM, IgG subclasses 1-4

Epstein Barr - LabCorp

For mold - MMP9, Human Trans Growth Factor Beta 1 (TGF-B1), Melanocyte Stimulating Hormone (MSH), Vascular Endothelial Growth Factor (VEGF) - LabCorp can do these

C4A - Quest can do this

Human Herpes Virus (HHV6) IgM and IgG - LabCorp

Lyme and coinfection - Igenex Lyme and coinfection panels - for this one, you can call Igenex (or just stop by the lab since you're in the Bay Area) and ask them which tests to start with - they can give you (or send you) the kits and you can take these to your pediatrician and ask him to sign off.

 

Mold in your home - you don't need a doctor for this one - just call Mycometrics (phone # is on their website) and order an ERMI kit to run the test on your home - you'll need help interpreting it though

 

Methylation - you can order the 23&Me test and do it yourself, but you will probably need a specialist to help you interpret and determine what supplements are needed. I've found a PAMF doctor who can do this, but she's in the concierge practice and that costs $300 per month just to be a member. Let me know if you want her name.

[Plum99]

Mama2alex, would it be possible for you to just be my doctor? 💕

[Plum99]

VEGF- of course I still have to google everything to keep up understanding. What are the chances I would see it associated with the rare birthmark my son has, CMTC. Amazing.

[Bearmom]

I also was lucky and found a pediatrician to treat it! I would never put a 3 yr old on Zoloft!!! I would ask for Keflex or augmenting as they are what seems to work..prefer Keflex ( Cephalexin)

My doc uses Keflex and NSAIDS only.. and has great results. He has over 40 patients. Do not wait because the more flares there are the harder it is to get to baseline. Good luck!! The hard thing with specialists is that they don't have the big picture! A pediatrician does and can prescribe he meds needed.

[jan251]

Here is an article (now two years old) that lays out a basic testing roadmap and might be worth bringing to your doc.

 

http://ndnr.com/autoimmuneallergy-medicine/elucidating-pandas/

 

In particular, I would consider adding testing for IgM/IgE/IgG total and IgG subclasses, a peek at immune system functioning.

Edited July 30, 2016 by jan251

[Plum99]

I think I messed up with the antibiotics I thought worked. Originally, she was prescribed Keflex for a week, and then after a week they sent in an order for Penecillin. I thought the Keflex didn't do much, since I started seeing drastic results as soon as she started the Penecillin. I think maybe I was seeing the results of Keflex. But then she was done and had nothing for two days, slight symptoms came back, pediatrician refilled Penecillin and it has been a whole day and I think she's getting worse. I think I really messed up by telling him this one worked. It doesn't make sense to me that a 2 day break would stop the progress once antibiotics started again. I'm so bummed about it. Now I'm starting to feel like I really am a crazy mom who read too much on the Internet.

[Clio]

VEGF- of course I still have to google everything to keep up understanding. What are the chances I would see it associated with the rare birthmark my son has, CMTC. Amazing.

SSoda - what is VEGF? Is it related to MTHFR? My daughter also has CMTC, her cousin has PANDAS. Thanks in advance!