NEED ADVICE!

[Ataloss12]

Hello everyone!!

 

I thought we were out of the woods until this Tuesday. My DD5 was diagnosed with PANDAS and started on Augmentin 400mg bid and was on it for about 40 days. Dr. K told us to finish her last round and wait for a few weeks to see where we were. We stopped the last round and she didn't have ANY intrusive thoughts for well over 4-5wks!! Then on Tuesday, she complained of a sore throat (was very red), so I started her on another round of abx that afternoon. Lastnight, she told us that she had a "bad thought" and stated she thought they were coming back.

 

My question is this: Should we continue abx and see where she goes with it, or just jump right in with IVIG? Dr. K feels like she has been dealing with PANDAS since a toddler, but we really noticed it March 5, 2012. She didn't get started on abx until around the second week of May. Can anyone chime in and assist me with this decision?? I am terrified of possible IVIG reactions.........

[peglem]

I don't know what to advise as far as IVIG, but when we need to nip an episode in the bud (and who doesn't need that?), we do use abx to help w/ whatever might have triggered it, but we also use prednisone to slow down/halt the autoimmune reaction. Even with IVIG every 3 weeks, my child still has flares.

[dcmom]

Hi Ataloss-

 

I have a few thoughts for you.

 

When we have a flare up (which can be due to illness, lose teeth, etc) we jump on it asap. My kids are not on abx, but if there is a flare, we immediately put them on a course of antibiotics. We add to that regular advil dosing (3x/day for 5 days) to help with inflammation. This protocol works best if we start it immediately, before the "horse has left the barn", so to speak.

 

If the above protocol does not work, or if the flare up is dramatic and debilitating very quickly, we jump to oral steroids (prednisone). I have taken to using just enough steroids for symptoms to recede and not more.

 

So, for example, in this past school year, each daughter (I have two with pandas) probably went on the antibiotic protocol 3x, and the steroid protocol twice.

 

For us, this has kept our kids at 90% about 90% of the time.

 

Another thing to add- we did have strep 1.5 years (almost) ago, and for that we used clindamycin (as at the time they were already on multiple abx). In the future, if mine get strep- I do plan to jump right to the clinda, so as not to fool around with clearing the strep. I am not sure how long of a time there was between your strep cases, but if there are a couple postitive swabs within a couple of months, I would be concerned that this was actually not a new infection, but an infection that has not cleared, or has only been kept at bay with your current abx protocol.

 

If none of the above works, I would jump immediately to IVIG. My kids have not had IVIG, but they did have pex- which was a great decision. I don't believe in wasting time and letting this disorder claim more of my kids lives. I truly think that this can be managed with abx and steroids, but there may be times when something a little stronger is needed, and I say the sooner the better. As pandas is left not treated effectively (for us anyway) symptoms snowball. It is so much faster and easier to heal from one or two ocd/ pandas issues, than from a laundry list of them.

 

So in a nutshell- my advice (if Dr K goes for it) would be a course of clindamycin followed by a course of prednisone. I would give that no more than 45 days. If that does not work, I would be scheduling the IVIG.

 

Good luck!

[Ataloss12]

I don't know what to advise as far as IVIG, but when we need to nip an episode in the bud (and who doesn't need that?), we do use abx to help w/ whatever might have triggered it, but we also use prednisone to slow down/halt the autoimmune reaction. Even with IVIG every 3 weeks, my child still has flares.

 

Thank you for your response. You still have issues with flares, even after IVIG?? Dr. K told me that IVIG "was the cure". Is this dependant on how long the child went without treatment for PANDAS? If IVIG isn't 100% going to cure it, I am not sure it a risk worth taking in our case. We do have an appointment with Dr. B to get him on board as well, making him the third PANDAS specialist that we have been dealing with.

[peglem]

I don't know what to advise as far as IVIG, but when we need to nip an episode in the bud (and who doesn't need that?), we do use abx to help w/ whatever might have triggered it, but we also use prednisone to slow down/halt the autoimmune reaction. Even with IVIG every 3 weeks, my child still has flares.

 

Thank you for your response. You still have issues with flares, even after IVIG?? Dr. K told me that IVIG "was the cure". Is this dependant on how long the child went without treatment for PANDAS? If IVIG isn't 100% going to cure it, I am not sure it a risk worth taking in our case. We do have an appointment with Dr. B to get him on board as well, making him the third PANDAS specialist that we have been dealing with.

Well my child's case is extreme and not "typical". She does have immune deficiency as well. It could be that she was left untreated for so long- IDK. I do hear about some children being cured by IVIG, we seem to need more than that.

[Ataloss12]

Well my child's case is extreme and not "typical". She does have immune deficiency as well. It could be that she was left untreated for so long- IDK. I do hear about some children being cured by IVIG, we seem to need more than that.

 

Sorry to hear that. According to our daughter's bloodwork, she is immune deficient as well. We didn't know until Dr. T ran bloodwork to detect PANDAS. We saw Dr. K and he didn't seem to think there was anything to worry about regarding the immune issues and stated it was "good" in our case because insurance would cover the IVIG if we proceeded. We will be going to see Dr. B next month to address any potential allergy/immune issues or triggers.

[norcalmom]

I don't know if they are still accepting kids into the IVIG study the NIMH is doing, but if this is only her second know exacerbation - then you may be elligible to participate. Free IVIG, with top docs and researchers in the country. Search the site a bit for the contact info. I know they screen by phone. It may be worth a phone call if they are still accepting. They are basically repeating the IVIG study done 20 years ago - so it has more up to date scientific protocl behind it (more kids int he study, double blind....etc) and screening is a bit different - more kids with primary OCD (20 years ago more kids primarily tics).

 

Best of luck in your decision. I personally believe that early, aggressive treatment is the way to go. YOu maybe able to nip it in the bud.

 

DR Tanya Murphy of Florida is doing an antibiotics study if you feel that you aren't ready for the IVIG - again google or search the site. I'm pretty sure they are actively recruiting for that study. Might also be worth a call to investigate what antibitoics, what kind of bloodwork etc...