120hrs on Augmentin update...

[vermontmoms]

Well, some of you responded to my post over the weekend when we were in die-off or (herxing) nightmare this past weekend. So I thought I would post an update...

After I posted we talked to our ped and she said to add benedryl and magnesium. We added both and when he woke Sunday morning he was like a new child. Yes, his tics were still there but they were very mild (especially when compared to Saturday when he could barely breathe b/c of his constant tics and couldn't walk more then 12ft without having to stop and stretch or squat). On Monday, when he returned to school the teacher told me that afternoon that she would have sworn I sent a different child to class then the one she had on Friday. Today (Tues) was even better as I heard no tics before school and only minimal ones this evening.

 

We still have a week and 2 days on this trial round of Augmentin but it is clear to me our son has PANDAS and not TS. We have been tracking his tic cycles since he was 5 (started when he was 3.5 after his first dx strep infection) and each bout has been associated with strep or a severe cold (which could have been strep but was dx as a flu or similar). This last episode has been the most obvious since he was tic free since his outbreak of scarlett fever (which documented and treated) last April until end of Oct. In the end of Oct. his best friend tested positive for strep. Once he was exposed to strep his tics started going crazy. In early Nov. he now had typical motor tics along with several complex tics. By the end of Nov. his motor and vocal tics were off the charts (approx. every 4sec.) and his complex tics were happening everytime he walked or stood. His behavior also drastically changed and he became very literal, rigid and difficult.

 

During this episode we conducted testing (blood ASO titers along with other titers and extra blood work). In addition we requested the kit from Dr. Cunningham and got his CamK testing done also. Our ped. agreed with us that our son could be suffering from PANDAS and she agreed to put him on a trial does of Augmentin. So far the Augmentin is really helping give our son relief. He is thrilled b/c his tics are doing so much better. As any parent who has to witness PANDAS, we are elated that he is doing so much better on the abx treatment.

 

All this said....I am unsure where we go next? Now that we know it is PANDAS...now what? We live near Bethesda, MD so we are going to get an appt w/Dr. Latimer scheduled and take all the results to her. But what do we do in the meantime? Do we keep him on ABX? Or do we finish this course of ABX and then see what happens when he stops?

 

Thanks for any help you can offer as we feel clueless...this is a new territory for us, even though we had a feeling it was PANDAS for a year or more.

Take care,

Jen

[tpotter]

Absolutely stay on the abx. Dr. L.'s policy is until early adulthood. Many people lower the dose, and then raise it when the child gets sick. My kids couldn't do that, because they would get sick immediately.

 

I am so happy for you that you have answers.

[EAMom]

I agree with TPotter, stay on the full-strength Augmentin while you are waiting for your appt. with Dr. Latimer.

[peglem]

Another agreement here! Doesn't it just seem like a miracle?

[mom love]

I would agree to stay on the augmentin if you see positive results. Did you make that appointment with Dr. L yet? I read she is booking out til Feb.

 

I am curious about your ped adding benadryl and magnesium. Why did she suggest that? And are you continuing those or are you still seeing improvements without them?