Pondering antibiotics

[KLW]

As I aggressively pursue a local, insurance-friendly provider to order IVIg for DS (12yo), I couldn't help but think that we really haven't fully vetted all antibiotic options. History: When he was five we began naturopath which included supplements with natural antibacterial properties and then in Jan 2013 I switched to a medical route due to a positive H.Pylori test. In the midst of multiple rounds of H.Pylori protocol (amoxicillin, clarithromycin and prevacid) we found that when he finished a round he could not be off the antibiotics without very troublesome behaviors. We then began using 500mg amoxicillin 1x/day but troublesome behaviors returned in afternoon. Doc told me to use amox in morning and clarithromycin in afternoon - clarithromycin was as good as sugar pill. So went to two 500mg amox per day until Sept 2014, then switched to omnicef 300mg 2x/day until Aug 2015, when we did a 21 day round of xifaxan. After that he was off all oral antibiotics for 64 days, when this past Wednesday I told doc I thought I was seeing behaviors that warranted antibiotics. In addition, folliculitis flared badly while on the xifaxan (it is not absorbed, therefore it wasn't addressing anything but the GI tract). I thought was largely under control with topical clindamycin but it was beginning to get out of control again even with the topical, so he said put him back on the omnicef. The result was immediate and I didn't realize what bad shape he was in until he felt better...the slow decline was gradual. But the folliculitis disappeared overnight and he looked and felt like a different person, bless his sweet heart. He reacts so well to antibiotics, but it has NEVER gotten us even near where we need to be.

 

We are right back where we were before we did the xifaxan. I've never heard of omnicef used in the treatment for PANDAS and I've argued with docs more than once about the fact that we can't be thinking of "normal" dosing - more is often needed. Any time I've even mentioned Augmentin XR it is met with "that's too strong". I've been reading more and more here about people having success with antibiotics alone without having to do IVIg. Given the history above, do you think we've really given all of our antibiotic choices a chance? I think length of time on antibiotics has been fully vetted, but I'm not convinced we've tried the "right" antibiotic at the "right" dose. We don't know what bug is causing this, but clearly there is bacteria involved or the omnicef wouldn't touch it at all. Although I don't fear IVIg (maybe I should?), I can't help thinking that perhaps we should explore more antibiotic options at least in the short term. He is a tough and rather severe case that has been going on for over a decade, so I don't want to waste time if I should just go ahead and jump directly to IVIg per Dr. L.

 

Thanks - K

[MomWithOCDSon]

We're one of the families who is squarely in the pro-abx camp! And yes, Augmentin XR was the key to our DS's return to functionality.

 

Here's the thing about antibiotics, from my perspective. Abx are now being found to have some qualities that can be beneficial to people, above and beyond fighting microbes. Beta-lactam antibiotics, like Augmentin, are thought to have glutamate-modulating properties. And I believe that it is cephalasporins (?spelling?) that are anti-inflammatory. Furthermore, the clavulanic acid component in Augmentin has been ascribed with anti-depressant and anti-inflammatory characteristics. Given as part of the issue with a neural auto-immune condition like PANDAS is the permeability of the blood brain barrier and thus the microbes' and titers' access to brain spaces that the BBB would ordinarily keep them out of, ANY intervention that is beneficial to reduction of inflammation and return to health of the BBB is worth exploring/utilizing.

 

Sammy Maloney (of "Saving Sammy") was on antibiotics for about two years (Augmentin XR was a turning point for him). My DS was on Augmentin XR for nearly two years before we weaned him off very slowly because, as you've noted, every time prior to that in which we tried to cease abx or even trim them back substantially, his behavior would deteriorate.

 

In reality, Augmentin XR is LESS strong than a number of other abx because the amoxicillin is blended with clavulanic acid, and the formulation is time-release. Sammy Maloney and my DS took 1,000 mg. of XR twice daily for well over a year, to no ill effects and with only positive behavioral responses. I'll note that my DS was adult-sized (90 pounds) when he started this regimen, so technically, he was large enough to handle an "adult" dose of the XR. If you look it up, the standard treatment regimen for adults who have sinus infections and the like is DOUBLE what my DS and Sammy took: 2,000 mg., twice daily. So I have trouble buying the "too strong" response. It sounds like someone is just looking at the milligrams and not really studying the actual protocols.

 

Unfortunately, many of the notable PANDAS/PANs researchers and doctors continue to warn against prolonged use of abx for these conditions (including Swedo and Latimer); however, their primary concern has been put forward as incidences of c-difficile, rather than the "abx resistance" that some practitioners warn of. I know that c-diff is a very real and legitimate concern, so it's definitely something to be aware of and guard against. We, and most folks who use abx for prolonged periods, also use good quality probiotics in significant quantities to help protect the gut and repopulate its beneficial flora.

 

Follow your gut and all the best to you!

[KLW]

My gut is definitely telling me we need to try the Augmentin XR before going IVIg.

[jan251]

I think it makes sense to try the Augmentin XR before IVIg, especially if your gut wants you to try. Besides, by the time IVIg gets set up, you might even know whether Augmentin is going to help. Could you keep pushing for IVIg so that it's waiting in case the Augmentin doesn't help?

 

FWIW, we are in a situation where antibiotics, including some for lyme etc., brought no relief. Now we have discovered immune deficiencies and are considering that we may need *both* IVIg and antibiotics rather than either/or.

[KLW]

I will definitely keep working toward IVIg. Earlier today I sent the ped a note. Turns out he cannot order the IVIg directly and he is trying his darndest to find a specialist. The first immunologist balked and punted to neurology. The verdict is still out on neurologist - he's fickle and voiced his concerns but also understood the potential for need of IVIg. So the verdict is still out on him. The note I sent said in the short-term it might be helpful to try another antibiotic and that may help the specialists get a better warm-fuzzy about IVIg if we see no benefits since they both have successfully treated PANDAS with abx. I would LOVE it if Augmentin XR did the trick w/o IVIg! But we do have immunodefiency, too. We may also need both. I won't know about the Augmentin XR unless I try. I just know that status quo is unacceptable, so we have to do something different. Thank you so much!

[Mom23boys]

Omnicef is actually used with some regularity for PANDAS. Dr. Murphy has done several studies on it and according to Latimer there is some very good data on it. It is apparently Dr. Murphy's preferred antibiotic, or so I hear. The ped infectious disease doc that treats my sister's children told her to ask for Omnicef if they test positive for strep. It is in her opinion the best abx for it and no strep strains are immune.

 

We have tics only now, and not terrible ones except they are facial so noticeable. We have tried azith, bicillin, and now Omnicef. We have seen a decrease/elimination in vocal tic (sniffing) with Omnicef. Rest is still the same. Augmentin (at 875 for 10 days for sinus infection) did nothing.

 

I agree to try all abx before doing IVIG. Have you tried a steroid burst or taper? Dr. Latimer has us on an 8 week steroid taper for one child and 30 days for another. The 8 week one has not done anything (resistant tics 15 year old) and the 30 day one is for a kid with basically no tics after 2 weeks on azith so we are just trying to calm things down so he stays that way.

 

HD IVIG is almost never covered by insurance unless you have Medicaid from what I understand so I would try everything I could before crossing that bridge!

[Mom23boys]

And just FYI, the immunodeficiency IVIG is low dose which according to most pandas experts can make pandas symptoms worse. Low dose is what is covered by insurance if you can meet the hurdles. High dose rarely is, but is what you need for PANDAS. Low dose stimulates the immune system, which is not what you want when you have anti neuronal antibodies attacking the brain. High dose calms down the immune system and is what is used in an autoimmune disease.

[KLW]

Yes, Dr. Latimer ordered a pred burst which was actually 60mg per day for 10 days with no taper (I had to confirm that is what she meant to do as I had never heard of no taper, but apparently that is common now). He responded immediately - tics completely disappeared after first dose, his handwriting got better, it was summer and his swim strokes became more coordinated, it was amazing. And then of course regression after we stopped it, darn it. But at least I know it is possible.

 

Omnicef is only addressing bacteria daily dose to dose. Every day I give with breakfast and then I can tell when he is needing it again in the afternoon via behaviors. It has been like this for over a year. Yes, he takes high-dose good quality probiotics two times a day which actually helps with tics.

 

I've been extremely concerned with the low-dose weekly Hizentra subQ infusions we've been doing for several months now after I learned that it is contraindicated for PANDAS. The doc that ordered it believes it is a viable PANDAS treatment. She really is not just doing this for the immunodeficiency part of it even though I've provided them with information showing it is contraindicated. Dr. Latimer has not expressed any concerns about doing it except to say that now that we have nearly a year behind us and his levels are not rising quickly we need to do IVIg.

 

Hopefully ped will call today (he sees no patients on Tuesday). Thanks for taking the time to write, everyone!

[wisdom_seeker]

Yes, Dr. Latimer ordered a pred burst which was actually 60mg per day for 10 days with no taper (I had to confirm that is what she meant to do as I had never heard of no taper, but apparently that is common now). He responded immediately - tics completely disappeared after first dose, his handwriting got better, it was summer and his swim strokes became more coordinated, it was amazing. And then of course regression after we stopped it, darn it. But at least I know it is possible.

 

Omnicef is only addressing bacteria daily dose to dose. Every day I give with breakfast and then I can tell when he is needing it again in the afternoon via behaviors. It has been like this for over a year. Yes, he takes high-dose good quality probiotics two times a day which actually helps with tics.

 

I've been extremely concerned with the low-dose weekly Hizentra subQ infusions we've been doing for several months now after I learned that it is contraindicated for PANDAS. The doc that ordered it believes it is a viable PANDAS treatment. She really is not just doing this for the immunodeficiency part of it even though I've provided them with information showing it is contraindicated. Dr. Latimer has not expressed any concerns about doing it except to say that now that we have nearly a year behind us and his levels are not rising quickly we need to do IVIg.

 

Could you please link the evidence you use for LD IVIG being contraindicated for PANDAS? I've been wondering whether to try with LD, since that's so much easier to get approved for.

 

And, what did you mean ".....nearly a year behind us and his levels are not rising quickly we need to do IVIG?

 

So, did you wind up doing the HD IVIG and get better results? Was Dr. L able to get it preauthorized? For what indication?

 

Hoping to learn from your example!!

 

WS

[KLW]

From PANDAS Physician Network:

 

"Of particular concern, multiple low-dose infusions of IVIG (such as those used to treat some immunodeficiency syndromes) may worsen symptoms of PANDAS through activation of the immune system and should be avoided."

 

and

 

"The dose used in the NIH trials was 2 grams/kg of child’s weight (1 gm/kg per day for 2 days). Based on calculated blood volumes, some have suggested that the dose could be reduced to 1.5gm/kg (750 mg/kg per day x 2 days). However, there is no scientific evidence that either is more beneficial. The maximum dosage of IVIG is 100 gm/day (total dose over 2 days equals 200 gm)."

 

DS baseline Ig in Dec 2014 was 449. After a year of weekly subcutaneous hizentra infusions to treat hypogammaglobulemia (prior to confirming a PANDAS dx), levels had only risen to 818. Saw Dr. L in May 2015 and did Cunningham Panel, confirmed PANDAS, and Dr. L recommended 2g/kg. I pursued local immunologist support and found it as they would help pursue approval through insurance. Got approval to use gammunex. We have been doing 1g/kg monthly since Dec and for several reasons I'm glad we didn't jump straight to high dose. Levels have risen to 988 but clinically there is no change in anxiety, OCD, tics. It is time to do 2g/kg and while the wait for insurance approval is killing me, I'm confident it will happen and he'll be infused within the month. Local doc actually ordered 3 months in a row of 2g/kg, so we'll see how BCBS responds.

[Gpookie]

We jumped to HD two years ago and I agree with KLW. If your child has hypogammaglobulemia, you have to treat that separately from PANDAS. Preferably first. If your child has hypogammaglobulemia, HD will not help keep the numbers up and your child will most likely relapse over time (probably due to lingering infections). Autoimmune disorders are often a symptom of Hypogammaglobulemia, so for us, it was key to their recovery to treat this first. With a stronger immune system, we've cleared them of lingering infections and HD is now to knock out residual PANDAS symptoms. But every child is different. Though both sons have had the same low dose for the past 5 months, one son is getting HD this month and the other is getting LD, but needs allergy shots to get rid of residual symptoms.