A question for anyone who's child is helped by Augmentin

[TinyTreasures]

My son is nearly 4 years old and diagnosed with PANS about 6 months ago. His Neurologist tried Keflex and Zithromax with no change, but Augmentin seems to be our miracle drug. He has been started on Augmentin 4 times in the past 9 months and every single time, within 3-5 days he is 90-95% back to himself. One time he had a relapse after a cold after being on Augmentin for 30+ days so we stopped the Augmentin and he got really bad - HORRIBLE tics. We started it back up after a few weeks and once again he was WAY better within 5 days.

 

My question is this - what possible infection could Augmentin be fighting to have worked so well every single time? We have bloodwork testing for Mycoplasma, West Nile, Coxsackie, HHV6, and something else I can't read coming up on September 15th and I am wondering if there is anything else we should test for? Something that Augmentin works against?

 

Thank you!

[Hopeny]

For us it was Lyme. We used it in combo with biaxin.i was skeptical because amoxicillin did nothing/made things worse but augmentin was very effective. Lyme tests unfortunately are complicated. What symptoms did augmentin alleviate? It's a powerful antibiotic and there are lots if infections it can treat.

[nicklemama]

Ds has been tested for everything under the sun. All Dr T's tests. The only thing we found was ehrlichia and anaplasma. He's never had strep titers positive. He cannot be without augmentin. Not even prophylactic dose works. He is also on biaxin now to treat the coinfections. He flaired when he lost a molar and clindamycin was added for 10 days which worked and he came back out of it. My son cannot go without treatment dose abx.

[MomWithOCDSon]

We, too, had a very successful run with Augmentin . . . in our case, DS took the XR version ("treatment" dose, though only half the treatment dose recommended for active sinus infections and the like in adults), for nearly two years. When we finally did take him off, it was after that 2 years, and we weaned him very, very slowly. All previous attempts to take him off had been unsuccessful, not unlike Nicklemama's story, and we remain unclear as to whether that was because he was still fighting hidden infection or it was something else the Augmentin brought to the table, like glutamate modulation or the antidepressant characteristics associated with the clavulanic acid component of the med.

 

There's another recent thread exploring this topic posted by T.Mom and some research along these lines posted there, too.

 

My non-doctorly advice: if it works, stick with it. Nobody has all the answers on this crazy condition at this point, so we are required to be open to something of an "experiential" approach. So I would leave it in place as long as possible, make sure to provide plenty of probiotics to protect the gut and fend off yeast overgrowth and/or c-diff, and allow for a long, slow wean when you do decide to wean.

[JoyBop]

I listened to all of the pandas radio podcasts and perhaps the most memorable and brilliant guest was Allison Mallony. As everyone knows, her son Sammy was on high doses of Augmentin. She is not a doctor but she made many very poignant comments that I found even more helpful and relevant than most if the physician comments. I recommend you listen to it. She must have said 100 times, if your child is responding to the abx and is doing well, don't stop it come turkey. Slowly reduce the dosage and see if the child tolerates it. If not, keep the child one it. You work so hard to get them well, it just doesn't seem fair to pull the rug out from under both of you.

 

Also, there's still a lot that's not understood about why abx help pandas. Some doctors say there may be some anti inflammatory effects. Others claim its purely a prophylaxis to prevent new infection. We just don't know.

 

By the way, we've never tried it yet. One kiddo is allergiec to pennacillin and the other one is doing quite well on Keflex.

[TinyTreasures]

Thank you all! I would keep him on the antibiotics, but my husband does not believe in PANDAS even though he has never researched It, he just thinks this is a behavioral thing. He lives very much "in the moment" - I can't understand it at all but it is almost like he can't remember how our son was a week before, even if he acted like a completely different child! He has said though before that he just doesn't want to believe anything is happening, but he knows something is going on. We get our Cunningham Panel results back hopefully next week.

 

I wasn't aware we should taper Augmentin if we stopped it! By tapering it, could it allow the bacteria to slowly be able to build up against the antibiotic until it doesn't work? That is just what I thought...I never read anything like that. The first time he was on Augmentin his pediatrician prescribed it for the standard 10 day course and it worked amazingly well! The next time we started it because his PANDAS expert Neurologist prescribed it, and we kept it up until he got a cold and a flare from the cold. Then my husband said it must not be working and wanted to stop it. We stopped for several weeks and our son's tics were SO extremely bad. We did another 10 day course. Then I just started back up a few days ago (against what my husband wanted) because I knew he was in a flare, and once again it seems to be working. Augmentin has never fully eliminated the tics though, but it has helped bring our son back personality-wise 90-95%.

 

His symptoms in a flare are rages - absolute meltdowns over EVERYTHING, heightened sensory issues especially sound and food smells, sometimes ADHD behavior where he can't concentrate or focus on anything - you have to repeat yourself over and over and look right in his eyes for him to even hear you, speaking jibberish, stuttering, obsessions with everything bad and scary - monsters, ghosts, villains, killing, skeletons, zombies, etc., major irrational fears such as fears of the smoke detectors and outlets, major separation anxiety, difficulty falling asleep, being SO mean to his baby brother (when he is himself he is the sweetest brother ever), wetting the bed, hearing voices ("the head guy"), and horrible tics including hitting himself, hitting his head on things, stomping, grunting, jumping, arm jerks, restless behavior to where he can't sit still, grunting, sniffing, SCREAMING at the top of his lungs, blinking, and horrible language including the f word (usually not even when he is mad - often singing it in songs and just saying it to say it). We do not use bad language in our house, and when he is back to himself he NEVER says this word.

 

Hopefully our Cunningham Panel results will be definite one way or another. Thank you so much for ALL of your advice...I won't be stopping cold turkey again.

 

Oh also, what dosage (and age) are your children on? My nearly 4-year-old 30 pound son is on 250mg/3ml two times a day...does that seem too low?

Edited September 7, 2013 by TinyTreasures

[PowPow]

My child's doctors (both neuro & rheum) have suggested that the clavulanic acid in Augmentin is helping, not the amoxicillin at all. They have said that likely it is not working as an antibiotic, against infections, but as an anti-inflammatory. These are acrtuallynot the prescribing doctors for this medication, but they agree that the med could be helpful.

Have you tried steroids at all for your son?

That may also help decipher is it is an auto-immune process at play.

I hope you get some answers soon.

[EAMom]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/

 

Many antibiotics are discussed in this paper.

 

"The role of the immune system and, more importantly, its dysregulation in neuropsychiatric disorders has not only hinted at a potential pathological mechanism but may also provide new therapeutic alternatives. Antimicrobial agents are an appealing class of compounds owing to their inherent immunomodulatory properties. In addition, several of these compounds have been shown to have direct CNS effects, which may further hint to their efficacy in the treatment of some neuropsychiatric disorders, particularly those with an established or proposed immunological component."

 

But, I agree that chronic infection (eg Lyme or strep lurking in the sinuses or tonsils) may be another big reason kids relapse off antibiotics.

Edited September 8, 2013 by EAMom

[EAMom]

Be careful of steroids if there is any chance of Lyme. Also, prior steroids will affect the results of the Cunningham Test.

Edited September 8, 2013 by EAMom

[JoyBop]

I think Beth Mallonys reason for tapering off gently was to trial going off the abx in a more gentle way, preventing a major crash. She said she would taper Sammy off slowly to see how he responded because stopping cold turkey was unbearable if he was not going to tolerate going off it. As far as growing resistance to an abx, I would think you would have a better chance by not going off it completely rather than stopping and going back on later. But I only heard if this technique in PANDAS radio and have not had a doc prescribe in this manner. I just thought it would be an interesting and potentially helpful idea to pass on. You can listen to the podcast. I believe it was the first episode of Marcel Cairos first episode. She was very inspiring!

[nitshel]

Very interesting thought - that Augmentin is actually working as an anti-inflammatory and not as an antibiotic. Our son has not done well on Abx - granted we have not tried very many so far, but Ibuprofen does wonders for him- sadly that is not a long-term solution...so I guess to tweak the question on this thread a little- what is causing the inflammation and is the inflammation primarily in the brain?

[MomWithOCDSon]

Very interesting thought - that Augmentin is actually working as an anti-inflammatory and not as an antibiotic. Our son has not done well on Abx - granted we have not tried very many so far, but Ibuprofen does wonders for him- sadly that is not a long-term solution...so I guess to tweak the question on this thread a little- what is causing the inflammation and is the inflammation primarily in the brain?

I believe the prevailing theory is that an abnormally permeable blood brain barrier (BBB) allows irritants (microbes and/or antigens) into the brain space where they don't normally belong, and those, in turn, inflame the basal ganglia. But inflammation in the body or the brain can be caused by anything that irritates tissues, causing them to swell up in defense. So the goal is to help the BBB regain its strength and "bouncer" status, and calm the irritants and inflammation. I think I've read, too (someone double-check me on this) that it's thought that the BBB's increased permeability is the result of IT being inflamed to some extent, and thus anti-inflammatory measures are beneficial in multiple regards.

[JPdad]

My son is nearly 4 years old and diagnosed with PANS about 6 months ago. His Neurologist tried Keflex and Zithromax with no change, but Augmentin seems to be our miracle drug. He has been started on Augmentin 4 times in the past 9 months and every single time, within 3-5 days he is 90-95% back to himself. One time he had a relapse after a cold after being on Augmentin for 30+ days so we stopped the Augmentin and he got really bad - HORRIBLE tics. We started it back up after a few weeks and once again he was WAY better within 5 days.

 

My question is this - what possible infection could Augmentin be fighting to have worked so well every single time? We have bloodwork testing for Mycoplasma, West Nile, Coxsackie, HHV6, and something else I can't read coming up on September 15th and I am wondering if there is anything else we should test for? Something that Augmentin works against?

 

Thank you!

 

 

It could be strep hiding deep in the tonsils or inner ear. Our story is very similar to yours. After the first PANDAS episode caused by strep, we were helped greatly by augmentin. Every time we took him off Augmentin he'd be fine for 3-4 weeks, then would start a new flare and typically was diagnosed with an ear infection. A few days on Augmentin and he was better. Once the 10 day script ran out you could set your watch to it, and the whole flare process would start over in about 3 weeks.

 

After over a year of this process we finally convinced the docs to removed tonsils & adenoids, put in ear tubes, and prescribe daily Augmentin. Since that took place (cross fingers) he has been 100% healthy and PANDAS flare free for about 7 months now.

[PowPow]

 

Very interesting thought - that Augmentin is actually working as an anti-inflammatory and not as an antibiotic. Our son has not done well on Abx - granted we have not tried very many so far, but Ibuprofen does wonders for him- sadly that is not a long-term solution...so I guess to tweak the question on this thread a little- what is causing the inflammation and is the inflammation primarily in the brain?

My daughter was just found to have a connective tissue disorder(NOT lupus) and anti-phospholipid antibodies. We (including her docs) think it solves the PANS mystery for her. I would encourage parents of kids who respond to anti-inflammatory treatment to consider these systemic illnesses as the root of inflammation. Edited September 12, 2013 by PowPow