"Worried dad", how is your son doing?

[EAMom]

Hi Worried Dad,

 

how is your son doing on Azithromycin?

 

Also, I was curious if your son was put on prophylactic antibiotics once he was diagnosed with ARF? (I believe the protocol is abs until the age of 18 or 21.) Did he get this PANDAS-like OCD flareup while on abs?

 

I hope everything is going better.

[Worried_Dad]

Hi, EAMom:

 

Thanks for asking about our son's condition. It's been an emotionally exhausting couple of weeks, but we are seeing signs for hope. We had our phone consult with Dr. K last Wednesday, and he recommended we switch from the zithromax to augmentin (500 mg twice a day for 2 weeks, then 500 mg daily after that). He also recommended a 5-day "steroid burst" with prednisone (30 mg each morning). So we started that last Thursday.

 

In the first 2 days, our son's improvement on the steroid burst amazed us. He's still not out of the woods - still paces constantly and has pretty serious OCD contamination issues - but he's much improved from a week ago. Dr. K said noticeable improvement with the steroid burst would "double-confirm" the diagnosis of PANDAS, so I'd say there's no doubt now.

 

And yes, we were on prophylactic amoxil until a couple of months ago, when our local doctors advised us to discontinue the antibiotic because there was "no demonstrated benefit" for PANDAS. So a month and a half after stopping the amoxil, he seems to have gotten reinfected, and the symptoms flared worse than ever. How I wish I could go back in time and change that decision!!!

 

We're still hoping that the continued augmentin use will further reduce his OCD symptoms... but, for now, we're just relieved at the improvement. He laughs, jokes, and talks with us again, and that's major progress!

 

We're planning to move forward with IVIG treatment, as Dr. K (and others) have told us this is our son's best shot at avoiding future infections and further damage from the brain inflammation. Insurance probably won't cover it, but we feel like we have to try it.

 

We'll keep everybody posted as things progress. In any event, the prednisone seemed to reduce the inflammation and make a big difference in our son's symptom severity.

 

Take care!

[P_Mom]

Worried Dad,

So glad to hear about your sons improvement. We work with dr.K also...he is truly a blessing...the best and most knowledgeable PANDAS doc out there....really, the only one who truly has a grip on the disease, IMO. Already, your son is improved, I am so hopeful for you to see even more improvement now over the treatment plan. I have to warn you...dr.K is NOTHING like you may expect...I don't know what picture who have painted in your head about how he is, but, we were way off! I am not just talking looks...his personality..oh my gosh, I can't explain it...let me know what you think after you meet him. We were taken back a little at frist, but, ended up in hysterics at many pionts and I left there amazed at his brillance...my kids didn't know what to think of him ...it was hilarious.

 

Kelly

[CSP]

WD,

 

So glad to hear this has made you all happy with the results so far. Praying things keep going good.

 

CP

[EAMom]

Good news that your son is responding...I'll be interested to know what happens when you stop the steroids (what the Augmentin alone does.)

 

Our ped. (and neurologist) didn't want our daughter on prophylactic abs either. My husband looked at her with a straight face and said "We don't want this to happen again" (she had just spent a week in the hospital). She couldn't really respond to that one. When the neurologist told me the same thing I reminded her that dd's younger sister is a strep carrier. The rheumatologist actually admitted that we know more about PANDAS than she does and is going to tell the ped to do whatever we want.

 

Emma1 has found SAMe to be helpful for strep OCD. Have you tried that? Maybe would be helpful while waiting for IVIG if the Augmentin isn't cutting it?

[Worried_Dad]

Yep, we've tried SAMe along with about 2 dozen other supplements. Our main doc is very into complementary medicine, and we were happy to give everything a shot to help our son. Nothing has made a noticeable difference so far... but hey, it's got to be good for his overall health, and the anorexia issues make malnutrition a real possibility.

 

Our main doc just suggested MaxGXL, so I ordered some of that. Don't want to introduce it right now, with the prednisone and augmentin, though; too many variables. We did ask Dr. K about an extended "tapered" dose of prednisone and he said it's worth a try, so we're working on that with our local doc.

 

After 3 days of major improvement on the prednisone, our son's symptoms regressed a bit, which is why we wanted to try it a little longer. (I have Crohn's disease, and I remember what a big help prednisone was to me during major flare-ups.) We're scheduled for IVIG with Dr. K first week of October. Man, are we praying that that does the trick!

 

I'll keep posting updates as things progress. Thanks, everybody!

[EAMom]

Hang in there. I hope your son isn't losing too much weight.

 

Re. weight loss...has your doc ever done a "tilt test" on him? It's were they take the blood pressure after they've been lying down for a while (5 minutes I think?) and they again after standing...it helps tell them if your son is medically stable (heart is working okay). I don't think my ped really knew much about it but it but they do it all the time at the eating disorder clinic.

 

Interesting about the SAMe...sometime we need to take a poll on what works with PANDAS and what doesn't.

[Worried_Dad]

I LOVE your idea of listing what works and what doesn't in one topic thread! When we get through this, and our son's doing better, we plan to look back and try to figure out what we can recommend to others with a clear conscience.

 

Right now, the prednisone steroid burst clearly helped more than any other one med, supplement, or therapy so far. We finally got a prescription for another round of this, starting tomorrow morning. I'll let everyone know how it goes.

 

We're scheduled for IVIG on Oct 3 and 4 in Chicago. We're pinning all of our hopes on that right now, to be honest.

 

BTW, throughout our son's long months of insomnia and sleep problems, melatonin along with desyrel were the only things that seemed to really help. That combo finally stabilized his sleep cycle after 6-7 months of terrible, long nights and all-nighters.

 

And in case any docs are giving you grief about the "reality" of PANDAS, thought I'd share this: my son was accepted into a PET scan study back in March. Even though his symptoms were waning at that time, the scan showed inflammation in his right basal ganglia. Seems pretty "real" to us!

 

Best of luck to everyone. All our kids deserve a break!!!

[Indigo]

BTW, throughout our son's long months of insomnia and sleep problems, melatonin along with desyrel were the only things that seemed to really help. That combo finally stabilized his sleep cycle after 6-7 months of terrible, long nights and all-nighters.

 

Melatonin for our dd was a huge lifesaver after seven years of no sleep...it's interesting how Melatonin is also an anti-inflammatory, I wonder if that is why it helps the PANDAS kiddos so much...