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Got the dx. It's official.

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Had Dr. K call. Got the dx. It's official. Said there are several things that cannot be explained by anything else but PANDAS. 95-100% PANDAS confirmed. No abx because we've already seen failure. No steroid burst because it's mainly a diagnostic step. Straight to IVIg. Whew. Very overwhelming.


We'll still have to talk & set it all up & such. My question to y'all: he mentioned the IgA test...that's it. (Already know he has low titers with acute infection, so ASO/DNase B aren't necessary.) Those who have been on the precipice upon which I now stand, would you recommend that I try to get other tests prior to 1st IVIg?


I have an ENT that might run some tests. OR just do we just do what the expert says now that I've got him involved. Let go of the research & embrace PANDAS so to speak. I'll never know what started it all, so do I keep searching & hypothesizing or stop. (I know I'll always wonder but the questions really have no answer...my hypotheses are numerous & maybe one of them is correct, but I'll never know.)


And let me just give a BIG VIRTUAL HUG to everyone out there that has gone thru this and continues to go thru this. I'm not a huggy, touchy, feely person (especially now that my kid has PANDAS...keep your germs to yourself), but WTF?! We have to find this...usually by accident/luck. We have to do the research. We have to endure the doctors who treat us like we're crazy when we bring this up to them. We have to fight for our kids to get the treatments for something that totally exists (hello medical professionals!). Meanwhile, some mom (or dad) is picking their kid up at school after a great day and planning to stop at McDonald's to get a Happy Meal before soccer practice and then they'll go to grandma's big birthday party later. I liked the other analogy used on here a bit ago too: somewhere a lucky guy is having a heart attack. Nail on the head. And I can't help but get existential (not a hugger but a thinker)...why us, why now...and now what.


I'm off to process while my son sleeps the day away due to his insomnia. Or I might watch something trashy on TV and give my brain a break. I'm undecided right now.

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I'm glad you had a good phone call! Is he still on antibiotics? You can try switching antibiotics if the Zith isn't working. Some have had sucess with Omnicef and Keflex if your son is allergic to Augmentin. As for a steroid burst, I understand how he says one can use it to see if IVIG may work, but there are those on here who have had steroid burst knock the exacerbation into the beginning of recovery. Also, if your son is bad off (not sure how bad things are right now) you can request a steroid burst in hopes of giving him some relief for teh time being.


Finally, before IVIG, search out all coinfections discussed on here and rule them out.

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Dr. B did a C3d test which if positive, can show that an autoimmune process is going on which may help get it covered by insurance. He also does a Pneumoccocal antibody panel which my dd failed and combined with the C3d test and synmptoms, if was enough to get the IVIG covered by insurance which has made a HUGE difference for us.


My dd just had her 3rd HD ivig with Dr. B and she is doing marvelously. I cannot put into words how thankful I am to him and his staff for saving my daughter. It makes me cry to even contemplate what life would be like right now without having had those IVIG's.


She just had the 3rd one yesterday and the day befroe and so far no headaches or other side effects and so far no worseneing of her ocd symptoms either.


She's in school and she is doing things she just could not do before. After years of needing me to sleep with her, she has slept alone for a month now. I tuck her in, address a couple minor ocd issues, and she stays alone and goes to sleep. Today she rode a horse at the barn where she normally takes lessons but for a long time she couldn't ride if no one was around due to multiple ocd issues. Today she went up there and did everything herself and no one was around to make it easier. I asked her if her symtpoms has worsened today (due to just having a treatment) and she said no. Hopefully it'll stay that way. And we are reducing the celexa now too. that didn't go well two previous times we tried, but hopefully this time will be different because she is SO much better to begin with.

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Momaine - great news indeed!


Sarah Jane - I am in agreement with Vickie. I think it is very important to look for infections before doing IVIG. We have not yet done IVIG (waiting to change insurance carriers)... but our PANDAS doc was very careful about looking for infections and found a huge one in my son's sinuses. It was an infected cyst that would still be there today and would be affecting his vision had we not looked. More importantly, we would be thinking the IVIG did not work without realizing that there was an underlying infection. His C3D levels were 55 at the time (normal range 0-8) and he had some immune deficiencies. We are thinking insurance will cover this.


My son's infection was cleared and he is doing so much better. He is functional in school and with his friends. We are still planning to do IVIG because his OCD issues are subtle but still present and still ramp up with allergies and sinus stuffiness, and he still gets sick fairly often due to the immune deficiency. That is why I am so happy to hear that things are going well for Momaine.


I really encourage you to have someone look at immune status panel, C3D, mycoplasma, lyme, and strep titers. Once you do IVIG you cannot check these for quite some time as the donor antibodies will hide your child's true condition. You may also want to think about doing the Cunningham Test -though it is costly ($400). Once you do IVIG you will not be able to do this one either for a while an that number may prove valuable to you in the future if IVIG does not work as well as you'd like and you are trying to understand your son's condition.


Best of luck with this decision. It is certainly not easy.

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I think Dr B has a new list of lab testing (possibly on his website) he requires all patients to do prior to first visit.

that would be a good list to use. All were covered by insurance except Igenex Lyme testing (500 ish)


If you suspect Lyme it would be good to do that pre IVIG.

You would have to wait 3 months after IVIG to run that test which is a long time.

Good Luck.


My son did wonderfully on IVIG for a year and a half.

Hope it works for you.

If you need any tips on how to keep your child engaged during long IV I have many good tips.

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Thanks for all the info everyone. Good to hear of successes! I am going to contact our ENT & see if he'll run some tests to be sure. MP is definitely a big one & I'll try to find the Dr. B list. I'm pretty sure no Lyme...wouldn't even know how he'd have gotten it. Will do more research to be sure I'm not missing anything. I will likely try to get some abx because to have behaviors up until IVIg will not be pleasant (understatement of the year). Am hoping that he calms down some very soon. We are still seeing new things crop up...and we're a month out from the strep dx & did Omnicef & 2 rounds of Zith for an ear infection behind that.


@Healingthedude: tips for the IVIg would be much appreciated. I figure we'll take our portable DVD player/new DVDs, Leapster/new games, books...beyond that I'm not sure. (You said it worked for 1.5 years. I'm sorry I don't know your history. Was there a relapse? Doing another IVIg? Good luck!

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