Discussion: Antibiotic or Anti-Inflammatory Treatment for PANDAS

[Hierge]

Wow Stephanie! It seems that you are very experienced with anti-inflammatories. I am going to talk to Dr. Latimer about them. I actually started Curcumin this morning myself. Another vital supplement Dr. Barry Sears discusses is baby aspirin. There are actually aspirin generated Eicosinoids which have a major beneficial effect in small doses. One baby aspirin a day is enough to do it.

 

I wish I had time at the moment to read all the responses to this and to thoroughly respond myself. But I will say this. I believe that my 5 year old responds so well to zithromax b/c it si so anti-inflammatory for him (also modulates the immune system). when zith fails and we suspect strep, i switch him to augmentin. going to experiment with only prophylactic abx soon. Also our DAN practitioner recommended that we bump up the fish oil for the anti-inflammatory effect as well, something about it being a PPAR agonist/antagonist? I can't remember, but he said it would work similar to Actos. We also use Enhansa, a curcumin supplement for anti-inflammatory properties.

 

I also want to mention that both of my boys have pandas and they have responded tremendously to spironolactone and low-dose naltrexone. these are safe meds which a re used widely withing the autism community for pandas/autism. they each have an immune-modulating effect, as well as anti-inflammatory properties. also, when all else fails we start with a "motrin protocol" (full-dose motrin every 3-4 hours, while awake, for 3 days at first sign of pandas symptoms). Lastly, steroid taper has helped my 2 year old, and one infusion of IVIG (1 g/kg) helped my 5 year old.

 

You are definitley on to something, and yes I agree there is something more to it than the fact that abx just treat strep. there are other infections that trigger pandas symptoms, yet the abx seem to help with that too.

 

Hello,

 

My name is Dave Hiergesell and I have recently joined this group in order to learn what I can about PANDAS treatment to help my daughter Blake. I have received a lot of great advice about this and I am implementing many of the ideas I have gotten. Thank you very much.

 

I'd like to bring a topic up for discussion as a kind of "null hypothesis" which could actually be tested at some point in the future, but for now it may be worthy of discussion. In this particular case, the null hypothesis is that there is no relationship between improvement of PANDAS symptoms and the anti-inflammatory effects of the antibiotic being administered.

 

As an "experimental hypothesis" I'd like to propose the following:

 

It is my suspicion (nearing an belief) that the primary clinical improvement in symptoms of PANDAS children who are taking antibiotics (prophylactic or otherwise) is due to the anti-inflammatory characteristics of certain antibiotics. The improvement is due to the reduction in inflammation REGARDLESS if there is any infectious agent there or not.

 

I realize that I've waded deep into the swamp of the controversy over antibiotic treatment of PANDAS and am on an island now. I believe that only through intense discussion and resultant research will we ever be able to get real answers on this disorder and agree on the safest treatment protocol possible.

 

I'm going to play devil's advocate here on antibiotics.

 

Personally, if I were Sammy's mom (or any other parent with a bad PANDAS case on their hands) I'd fire doctors until I found one willing to treat with prophylactic antibiotics. You give Sammy 2000 mg per day of Augmentin XR and his symptoms subside, then I don't care about the bad things other doctors say will happen by keeping him on this regime. He is a physical danger to himself at this point. Side effects of not giving him this treatment outweigh what the doctors are worried about. Its a moral choice at this point and the doctors don't have to live with Sammy.

 

Here's a different twist on this: Let's suppose for a moment that Sammy's PANDAS restricted diet of not eating for days on end, or eating only foods such as watermelon etc. are causing INTENSE inflammation in his body way above and beyond PANDAS. Let's say his body starts basically consuming itself due to malnutrition which is MAJOR inflammation.

 

My daughter Blake who has PANDAS is malnourished due to the fact that spices and other flavors most people take for granted in their diets are way too strong for her in a sensory capacity. She only drinks water because she reports that other drinks are too strong for her. She's practically a vegetarian now. Prior to PANDAS she ate and drank everything we gave her.

 

So, the malnourished PANDAS child is now going off the scale in terms of inflammation due to self-imposed DIETARY anomalies as a result of PANDAS. This would be like "turbo charging" PANDAS with inflammation off the scale. The more restricted the diet, the worse PANDAS becomes.

 

Now, enter the doctor. Let's say the doctor gives the malnourished "turbo charged" PANDAS child a blast of steroids. Symptoms resolve almost immediately. Inflammation zapped, symptoms resolve. Now the clock is ticking though. The steroids start doing their work on the immune system and the symptoms start to accumulate. Zap, the child is taken off steroids. PANDAS returns.

 

Enter antibiotics.

 

Augmentin XR has been shown in studies to have a positive effect on Alzheimer's sufferers. Are we to assume that the Augmentin is killing some sort of infection which is leading to the improvement in these patients? No, it's actually the anti-inflammatory characteristics of Augmentin that are helping these patients.

 

Well, what if the same mechanism where Augmentin XR helps Alzheimer's patients is the primary mechanism that also helps PANDAS sufferers? What if the infection gets zapped quickly and the inflammation causing antibodies are still reeking havoc on the PANDAS brain is being kept in check by the Augmentin XR?

 

Doesn't this scenario suggest other possible safer treatment alternatives? Ones that are not as controversial with "conventional" doctors?

 

There are numerous antibiotics that have anti-inflammatory effects such as Emycin and Tetracyclines. These are basically older antibiotics which don't come up in conversations about causing drug resistance. Any resistance these drugs have caused over the years has already taken place. The damage is done.

 

BUT, what about using these older antibiotics not primarily to kill infection, but in sub-antibiotic doses in an anti-inflammatory "cocktail" with an anti-inflammatory diet to keep PANDAS sufferers on a "maintenance program" with periodic checks for strep which would lead to blasts of powerful antibiotics to kill infections. What if we don't really NEED to have PANDAS kids on prophylactic antibiotics after all?

 

Rheumatologists currently use this type of treatment for arthritis and other autoimmune disorders. Since PANDAS is likely a rheumatic type of disorder (if you believe what the latest theories are proposing) then it makes sense to treat it in a similar fashion to other autoimmune disorders.

 

Personally, I'm not going to take that chance now that I have an opportunity to work with Dr. Latimer in Maryland in late September. If she wants to put Blake on prophylactic antibiotics then I am going to happily have the prescriptions filled at CVS. However, I am going forward with pushing for this other treatment regime over the long-term since that is what matters the most anyway.

 

Blake told me this morning that the Concerta she is taking daily at 27mg makes it harder for her to eat since it makes her not hungry. She tells me that her close friend who takes Concerta tells her that she is suffering from depression symptoms related to Concerta. Blake says that she feels depressed all the time and that she is unattractive. She's a 70lb 12 year old with glasses and few friends.

 

I am putting my money where my mouth is on anti-inflammation. Today she started on Eskimo dose IFOS pharmaceutical Omega 3 fish oil which is a very powerful anti-inflammatory that crosses the blood brain barrier. She told me anecdotally earlier that her depression symptoms have lifted. I gave her 7.5 grams or 10 capsules cut open and put in a strawberry/banana/milk shake with protein powder.

 

That's a lot of fish oil, but it is not dangerous at all. There is a blood thinning effect, but nowhere near as problematic as steroids or aspirin for that matter. She is now going on a Zone Diet balanced with 40% Protein / 30% healthy fats / 30% healthy carbs or as near as we can get it. We have to give her the protein powder in Egg White powder since she doesn't eat much meat, but baby steps.

 

I would be interested in some feedback no matter how dogmatic it is.

 

We PANDAS parents desperately need another track we can take with "mainstream" doctors. What if Sammy (from Saving Sammy) was benefiting not as much from the Augmentin XR killing his strep, but from Augmentin XR's anti-inflammatory effects? Can we reproduce the same results with other safer treatments?

 

The null hypothesis is that it's really the antibiotics which are keeping the strep infection at bay and not allowing antibodies to be produced in the first place. That's the primary "battle line" in the battle. The experimental hypothesis I propose is that it may be the inflammatory response that is the primary "battle line" in the PANDAS battle. If the experimental hypothesis holds any water, we can likely develop safer treatment protocols for PANDAS kids, ones that may be more acceptable to pediatricians worldwide.

 

It's a HUGE question. There's a lot of needless suffering hanging in the balance.

 

Dave H.

 

Wow Stephanie! It seems that you are very experienced with anti-inflammatories. I am going to talk to Dr. Latimer about them. I actually started Curcumin this morning myself. Another vital supplement Dr. Barry Sears discusses is baby aspirin. There are actually aspirin generated Eicosinoids which have a major beneficial effect in small doses. One baby aspirin a day is enough to do it.

Edited August 20, 2010 by Hierge

[momaine]

Excuse my ignorance here, but can someone please explain what exactly an ASO is? The one part I hate about this forum is always knowing the least, haha.

 

I think that I'm leaning towards the underlying infection, but I'm not too entirely sure. Could it not just be a combination of both? It took years to get it into my Mom's head that P.A.N.D.A.S. was antibodies, not actual strep, attacking my brain. It got me thinking though, & this is just a totally off the wall idea... Are ALL of our antibodies dysfunctional? Do we not have any that actually know what they're supposed to be doing? I say this because up until twelve months ago I had never, not one time, had a negative strep test. Rapid, culture, or otherwise. Every single strep test that I had ever taken had been positive, & eventually my pediatrician started specifically noticing how "insane" my GABHs levels were in all of them.

There was one instance where I woke up with a headache. This is definitely not uncommon for me. This was also when my Narcoleptic symptoms were really making school absolute H*ll, so for whatever reason on that day I decided to play this headache up a little bit so that I didn't have to go. Now, the rule at my house is that if you stay home, you have to go to the doctor. This is especially true in my case. So, true to her word, we tromped off to my pediatrician, who said that I was fine to go to school but that she was giving all of her patients a mandatory swineflu test. Not only did I have strep(GABHs), I had H1N1 without knowing it. The headache that I had was one of my NORMAL morning headaches, & I had no swineflu symptoms the entire time I had it.

 

What I'm asking is.. How does the bacteria get in our brain? & what about those of us who seem to constantly have it in our throats, anyway? In my head I've always imagined having some normal antibodies that try to fight the bacteria & somehow swap it off with the antineuronal ones that in turn carry it to the brain. That's just what I imagine though.

 

The affect that stress has on my symptoms also leads me to lean toward the underlying infection side. Since I never really know when I have strep it's difficult to link the severity of my symptoms to infections. On the other hand, linking them to stress is all too easy. I don't understand the Blood Brain Barrier as much as I would like to, but I've gathered that stress opens it & allows the antibodies to do their dirty work. In this case, would they still attack the brain if there was no infection at all present? Or are they haywire enough to fire off even when there's no infection present? If it's the latter, I find it hard to believe that we could trace their damage so specifically to the Basal Ganglia/Thalamus/Globus Pallidus region. On that note, has anyone done any research as to WHY it's those portions of the brains that got the short end of the stick here? Is there any possibility that they would be more likely to harbor an infection than other portions, possibly?

Have you ever had a pneumococcal antibody panel done to see if you have the antibodies to fight strep?