Honeymoon period or initial worsening

[Kimflow]

Hi everyone,

 

Trying to figure out the puzzle......would any of you share your experiences of either honeymoon periods with initial start of antibiotics or the opposite.....actual worsening of symptoms at the start of antibiotics.

 

We have had both and although I tried to go out and pull weeds to distract myself from it, I can't stop thinking about what is going on.

 

We had positive responses to both Amoxicillin and Keflex but both stopped working around day 7 and symptoms returned. We finally have switched to Augmentin this time...875 mg po split in two doses. He is on Day 3 and he is getting worse. Augmentin is stronger than amox and keflex probably but it is doing nothing. His verbal triggers are increasing every day, his choreiform movements although different than when they first came are back and they had virtually disappeared on day 7 of keflex. I actually smiled with my husband in the kitchen on day 7 of keflex when he said how much my son had improved. The next day, the original behaviors started to inch back in.

 

I have NOT seen him stick his finger down his throat which was what we saw with the failure of initial zpack and cease working of day 7 of Amoxicillin(he had red throat). I will say that we have not yet returned to the worst symptoms such as his pinching of his tops of his feet remains gone.....I suppose the zithromycin 250 mg is immunomodulating the PANDAS some.

 

So what is going on......thought some more of you might have past experiences with honeymoon periods (where I should have stayed the course on the amox. and keflex) or escalating symptoms on start of Augmentin only to later see it was working.

 

Thanks for your patience. I am just beside myself to think of sending him back to school tomorrow. Autism and now add PANDAS. It was already hard enough on him to do his learning. But if I don't, we'll lose the best aide he has ever had.

 

Kim

[bigmighty]

DS got a fair amount worse for the first three weeks on Augmentin 875 (yes, he had been on amox and on keflex previously - keflex having had the most positive effect up until that point). After third week on Augmentin, DS began to stabilize somewhat, but still below baseline. Nearly stopped eating for first two months on Augmentin. We were very nervous, but doc advised to give liquid supplements and continue. Another month on Augmentin 875 and slight improvement over baseline, but a lot of weight loss. Did a three week steroid burst at that point, saw great improvement during burst, and overall some improvement over baseline after steroids were stopped. After four months and one week on Augmentin, DS just recently went into remission. It has only been a couple of weeks, but DS has no PANDAS symptoms or behaviors at the moment. He remains on Augmentin 875 2x daily, plus florastor as probiotic. Hope this helps. So sorry you are going through all of this tedious trial and error. It is so hard to know when to stay the course and when to bail on something. We really wanted to bail on the Augmentin and also did not want to try the steroids. In our case, it was a good thing the doc talked us into them. Hang in there - Suzanne

[LNN]

I don't know enough of your story to ever attempt to say anything specific about your son. But I'm going to toss out a general theory and see if any of it strikes a chord... IMO, if a child had symptoms that put him on the spectrum and these symptoms eventually went away, then it seems that what you were seeing wasn't some sort of permanent disability or damage but rather the body's inability to cope with something that, over time, became less of a problem. So maybe there was a toxin problem - from a vaccine, from metals, from a nutritional imbalance, inflammation from a chronic infection...- and the body really struggled - due to a methylation problem, an excess of a neurotransmitter, leaky gut, an autoimmune response, etc. As the child grows and you pursue various treatments, the body starts to clear the roadblocks and behaviors improve.

 

So it sounds like you enjoyed a period of good health where you felt the nightmare was behind you. And now there's some sort of chronic infection that's recreating some sort of toxic build up. Antibiotics rarely are enough to clear an infection. Most abx slow down the reproduction of bacteria and kill some bugs, which gives the body more time to actually kill the remaining bacteria and win the war. But it's the combo of abx plus the immune system that gets the job done, not abx alone. So maybe the abx initially slow things down, but the immune system isn't robust enough to do its part and slowly, the bacteria win the numbers war and become an overwhelming force again. It's possible that this time, the augmentin is doing a better job at killing whatever bacteria is there. But when bacteria die, some strains can release a toxic die-off. If the body can't handle those toxins, then you could see a return of autism-like behaviors, pandas-like behaviors or other neuropsych symptoms.

 

I don't know what sort of ASD treatments you did, so I'm sorry if this is something you already know. Just tossing out a way to look at the problem.

 

You may want to read up on biofilms, which can shelter chronic infections, and on detox and methylation. This is a really good 20 min overview that talks about some of these issues

[Kimflow]

Bigmighty and LLM,

 

Thanks to both of you for your replies. I guess I will have to go the route of stay on Augmentin and pray that the bad is just something I have to push through...meaning it is actually working. I can't imagine how it couldn't be.

 

I am also going to see if I can find some sort of reference that might confirm that when the strep dies, it might release the toxins or maybe even enough strep particles to reactivate the strep symptoms.

 

LLM, we tried many things over the years to remediate the autism. My son was always so sensitive to everything that was supposed to help him. In the end, you are right we enjoyed many good years of great health and slow steady progress as a results of immunomodulation and controlling inflammation. Now the PANDAS is just beating all the immunomodulation and antiinflammatory measures we had and continue to have in place.

 

Thanks

[Missmom]

I think you should stick with the aug. my ds was on it and improved about 50% initially, but the dose was too low. Then after we found the correct dose for about the first five days on the higher dose he seemed to be getting worse, but then day 6-7 saw some improvement, days 8-9 saw even more improvement etc.... I know it is hard but try to be patient. I don't know your sons weight but try to make sure the doseage is high enough to get the job done we wasted about two weeks on a dose that was not adequate.