Need advice! How long to wait on Augmentin work fully?

[SEAMom]

I need to hear some success stories. My DS15 is on Augmentin - 875 mg 2x a day. He started first on it 2 weeks (then off for 5 days and all his symptoms came back) and then back on Augmentin again for 45 days now. His symptoms had gone down dramatically but they are not totally gone. He was out of school this spring for 2.5 months. He starts his freshman year of high school in the fall. We thought it would be good to keep him in a computer camp (all day 9-4 pm) that he was already registered for that started this week. It is a two week camp. He made it through the first two days but the evenings at home were really difficult. Day three he was a total mess and he could not make it out of the house. Hoping tomorrow is better. Clearly the camp has is really challenging his health physically. Note, he really really wanted to go to the camp - it was his idea to go.

 

How long should it take for for my DS to get well? How much time should I give the Augmentin to work? When would it be time to add the steroids to his treatment? Has anyone had success with just the steroids and antibiotics? I feel like everything I read seems like the steroids are just a placeholder until IVIG. How long do I wait to try and get IVIG as a treatment?

 

I would love your feedback. I have 11 weeks until my DS starts his first day of high school. I pray that he can enter the doors of school healthy. The clock is ticking!

 

 

[MomWithOCDSon]

While the research has not been done that substantiates our experience or my theory, I think older kids need perhaps more time on abx for sustained recovery. After several starts and stops and regressions and restarts such as you've described, we kept our DS on treatment-level abx for nearly two years before we slowly and carefully weaned him off. I don't know if that's because he'd been suffering with PANDAS longer prior to being correctly diagnosed and treated, or if it was because the strep he was contending with was more "emeshed" in his cellular make-up because it had gone untreated for so long (sinuses, biofilms, etc.), or if there was another reason he needed the Augmentin for as long as he did. But he did.

 

Also, if you can get it, I might suggest you try Augmentin XR in the 1,000 mg. formulation, also twice daily? Given your son's age, and assuming he's proportionate in terms of weight, that XR might be more effective for you. It was for us, and my DS was almost 13 when he was diagnosed and "adult-sized" in terms of med dosing (someone else can check me on this, but I think anything over 90 pounds is subject to adult dosing).

[Mayzoo]

My kiddo is 75lbs and on Augmentin XR 1000mg twice a day.

[SEAMom]

Thanks for all the great info. MomwithOCDson when your DS was on abx for two years was it at the full treatment dose? How did you wean him off? How slowly? I will check with our dr about the higher dose abx. He is 115 lbs so he is big enough. Did your son get well on abx alone?

[MomWithOCDSon]

Yes, ultimately it was treatment dose (Augmentin XR, 1,000 mg., twice daily) that he was on for the two years. Like you, we first tried an abrupt "stop" a couple of times a few times, but he regressed behaviorally every time so eventually, with the help of a doctor who was willing to renew the prescription over and over again, we kept him on. Finally, once he seemed to be doing really well for a sustained period (6+ months) without any major age-inappropriate events or mishaps, we decided to try and take him off again. But because we had come to believe that the abx was doing something beyond just fighting infection or quelling the immune system response (clavulanic acid, for instance, is thought to have anti-depressant qualities, and beta-lactam abx are thought to have glutamate-modulating properties), we didn't want to pull it suddenly and have him snap back, more or less like a rubber band. So we weaned him over about 4 months, overall, first dropping his evening dose from the 1,000 mg. to the 875 mg. formulation for a couple of weeks, then halving that evening dose while still keeping the morning one static. Then we dropped the morning dose down to the 875 mg. for a few weeks, too. Eventually we dropped the evening dose altogether, then we halved the morning dose, and then we finally dropped it, too.

 

Well on abx alone? No, not entirely. But my DS had had a "regular OCD" diagnosis since he was 6, and we didn't successfully get a PANDAS diagnosis or treatment until he was nearly 13; he "fell off the edge of the world," or had his worst and most dramatic PANDAS episode of his life at age 12 and became completely nonfunctional -- curled up in the fetal position on the floor of his room, unable to go to school, unable to participate in any of the normal, age-appropriate activities he'd willingly and capably done before, even with OCD in and out of the picture. So he had more than 7 years to develop a whole host of OCD-coping behaviors and thought processes that create a major web for unwinding. At his worst, we had him abx as well as both a low-dose SSRI and intensive therapy (ERP), 2 to 3 days per week, plus "homework." We have also used lamictal, an anti-seizure med that, again, is thought to have glutamate modulating capabilities. And we've been doing supplements since about age 13, as well, thanks to this forum and much of the research that has come across from all these wonderful, knowledgeable and kind folks.

 

Success story? I think he is one. Within a month of beginning abx, we were able to start getting him back into school, slowly, one class at a time, but he was able to do it. Within 8 months of abx, he was back in school full time. Within 12 months of abx he was essentially himself with respect to the outside world, reserving his meltdowns and other age-inappropriate behaviors for the safety of his home. By the time we took him off the abx completely, he would appear to anyone who didn't know him extremely well to be 100% himself again, though we could tell he was still struggled at times.

 

My DS still has some OCD tendencies, exacerbated by stressful events; at this point, I'm assuming that this is part of who he is. He still takes a low-dose SSRI and supplements, but other than the work he does on his own in terms of what I'll call "situational ERP," he doesn't attend any regular therapy anymore, though we wouldn't be surprised to see him return to therapy for periods in his life during which his stress increases substantially. He graduated summa cum laude from high school and he's scheduled to attend college in the fall as an engineering major. Based on some of the other incoming freshmen engineering majors we met during his scholarship weekend at the school (he's also gotten a four-year academic scholarship), I'd say he's going to fit in pretty well with the student body, as many of them are "quirky," like him.

 

I guess my closing comment would be that many of us find this whole PANDAS/PANS thing to be a marathon, rather than a sprint. But the race is still winnable and even enjoyable, in the end.