Constant Underlying Inflammation

[cara615]

What could be the cause of my son's inflammation if he does not have an active infection? Last we tested, all his titres were back to normal. His gut health was much improved and clostridia was gone. He takes Allegra for allergies but yet still has so much inflammation.

 

The steroid I gave him this weekend proved it was inflammation because it reduced his tics by 95%. If he had an underlying infection I would think that the steroid would have had the opposite effect.

 

Will we ever get to the bottom of it and be able to quiet his immune system? Does it just take time or will we need IVIG.

 

Anyone in the same situation?

[qannie47]

Remember that one theory is that these antibodies can stay in the brain for several years...therefor things like stress, colds, etc., can activate these antibodies therefor causing the symptoms...something like that.

 

Also, when my son stopped returning 100% baseline and holding, it was at that time that Dr. K said we needed to do IVIG. Dr. K feels that abx stops working eventually with Pandas kids.

[WorriedDADNMOM]

Not sure really. ABX Zithromax and now PenVK really worked for us to stop tics and improve behaviors.

 

Any natural supplements being used to fight inflammation??? Cod Liver Oil, Curcumin. What about diet changes??? Sugar??

 

I can say for us, eliminating pets, milk and trying best we can with whole foods....coupled with MANY supplements have really helped us.

 

If you have a DAN or Integrative Ped who can do a comprehensive overview for infections both bacterial and VIRAL, vitamin, mineral etc...imbalances. Plus dealing with future infections while trying to "chill and heal" the immune system.

 

Let us know if you have any questions.

[rowingmom]

"What could be the cause of my son's inflammation if he does not have an active infection? Last we tested, all his titres were back to normal."

 

Titers of what? You have checked titers of everything?

Edited November 6, 2014 by rowingmom

[cara615]

We checked titres for strep, myco P, EBV, coxackie, and H. Pylori. I realize that he could still have another type of infection albeit bacterial or viral but its like looking for a needle in a haystack and putting him back on daily zithro made things worse! I wonder why that was?

[jan251]

On daily zithro making it worse, my guess would be either that yeast is a possible immune trigger or that daily zithro was not strong enough to kill the main problem yet killed off some competitor of the main problem.

 

On your main question, what about Lyme?

[cara615]

We tested negative for Lyme (no IND bands either ) but on Lapcorps Western blot. However, I would think that if he had Lyme then the steroids would have made things worse.

[rowingmom]

Lyme infection is not a prerequisite for bartonella, babesia, anaplasma, ehrlichia etc. They can be stand alone infections.

[cara615]

I totally understand that. We do plan to test for those soon. Didn't want to take blood from ds on Monday because we didn't want to stress him out too badly. But if he had active infections of any kind wouldn't the steroid make it worse?

[rowingmom]

If infection is causing inflammation and the steroid is decreasing inflammation you would see a masking/decrease in symptoms, but not resolution of infection. How long it would take the infection to proliferate would depend on the infection.

 

Most infections cause inflammation as endo/exotoxins are released (initiating cytokine cascades which trigger further immune response). This can be caused either by abx treatment or by the innate immune system itself.

[MomWithOCDSon]

On a tendency toward "constant underlying inflammation" . . . that topic title caught my eye.

 

Inflammation is all the talk of late with medical practitioners of all ilks (just Google it) as a major contributor to health woes, and it doesn't have to be infection-related. Yes, for some, it appears that responses to dairy, gluten, wheat and/or sugar can be the culprit. For us, environmental allergens are a major issue in that regard. And while I have no doubt that continuing further on the spectrum of "clean eating" that we generally attempt but are by no means fully committed to at this point would probably help my entire family with our bouts of inflammation. But then there's real life . . .

 

At our last psych appointment, our PANDAS-savvy psych noted that, in our last two appointments (six months apart), DS has appeared to be suffering from some inflammation, predominantly upper respiratory. But we'd just had a full run of labs done, and he comes out clean in all respects, plus he has a history of major allergies, so we've attributed it to that. Mold, in particular, has been very high lately.

 

She pulled out some recent research she's been taking in with regard to inflammation and psych issues, and asked what we've been doing for the allergies . . . Flonase, but otherwise, OTC responses. She's of the opinion that keeping the inflammation under control is a key concern. She suggested we talk with DS's regular MD about Singulair, as it is specifically an anti-inflammatory asthma/allergy med. DS's doctor thought it was worth a try, and the results have been remarkably good. His nasal and upper respiratory response has been good, but we're seeing a calmer, less-stressed, more focused high school senior, as well.

 

I think there've been some other negative, as opposed to positive, responses to Singulair noted here on the forum, so I'm not sure what makes the difference . . . methylation issues, perhaps? Anyway, it definitely seems to be helping in our case.

[qannie47]

I swear by curcumin/turmeric as a anti-inflammatory. It has worked so well for my ds. I finally found one that is not sooo expensive that works as well as the Douglas Lab's one that has been bleeding my pocketbook. It is called Pure Turmerc, and it is 750mg per 2 cap. It also has a pepperdine in it to help with absorption, which is necessary. I tested in on myself to make sure it works, it does! (I have chronic back/neck pain). It relieves my pain 100% around the clock. It is about $35 for 150 capsules as opposed to $45 for 60.

 

What I also like about Turmeric, is that clinical research shows that it is also a natural anti-oxidant and cleans out the liver, a bonus for these kids whom have consumed lots of motrin in their young lives...

[awilliams74]

We saw significant improvements with singulair, literally within 2 hours, this past spring. Before PANDAS began (or before the big flare in hindsight) the pediatrician had started DS on singulair 5 mg daily in addition to his usual zyrtec 10 mg (per pediatrician, singulair alone didn't do too much, but great when also taking zyrtec). When PANDAS hit and we had no idea what we were dealing with, we stopped singulair as it was new in the previous couple of months and the only med he was taking beside zyrtec. That was early August 2013. Spring 2014 his PANDAS symptoms were increasing and he also seemed to have an increase in allergy symptoms (post-nasal drip, stuffy, etc.). While waiting to hear back from the pediatrician I couldn't watch him suffer anymore and gave him singulair 5 mg from his previous prescription. Honestly, within 2 hours he was almost at his baseline 80-90% recovery (this repeated itself several days later when we were trying to space out his singulair a little later in the day). We have been on both zyrtec and singulair ever since. Once the snow hits and hopefully allergens are down we hope to try and take a singulair break.

[cara615]

Thank you all for our very insightful replies. I know allergies are a part of the picture for DS and as such he is on twice daily Allegra. I know its helping but I will inquire with his doctor about something more effective. Right now, the steroid is still effective and the daily Mobic plus CBD oil is keeping inflammation low. He still has tics but he is back to 90% baseline I would say.

 

Let's see if we can keep him like this for a while. Am I right in assuming that if I quiet the glial cells in his brain it will give them time to heal?

[awilliams74]

I wish I could answer the healing question, we are stuck in a similar spot right now. The MD/immunologist that diagnosed PANDAS told us we should be ecstatic with 80% return to baseline. We are currently 85-90% at baseline with mild tics, OCD and focus issues - we have been at this level since late July except for 1 "blip" I would say. I don't know if there is a piece we are still missing or is he healing and I need to be patient and let time work.

 

As for allergies, we tried without success, allegra and Claritin. Zyrtec has been the only one to work for DS and now with the additional singulair.