Antibiotics

[momindc]

My 9yo daughter, under the care of Dr. L, started Augmentin 500mg 2x/day 6 days ago. Previously she was on Omnicef for about 4 weeks but got strep during that time, hence the switch to Augmentin. Prior to the strep she seemed to be responding well to the Omnicef. DD was diagnosed PANS in early June 2013 by Dr. L and her main PANS symptoms are motor tics and hyperactivity, but she does have bouts of frequent urination and anxiety from time to time. DD's recent Cunningham test results were "PANDAS/PANS highly likely."

 

3 days ago (3 days into the Augmentin), DD contracted a stomach virus that a couple of her friends also got. Headache, stomach aches, vomiting.

 

My ? is - in how long should we expect to see improvement with the antibiotics? Especially given that we've had to deal with both strep and a nasty stomach virus within the last month? DD's tics seemed to have ramped up again following the recent stomach virus a couple of days ago, and her hyperactivity also seems to be back.

 

Also, given Cunningham results of "PANDAS/PANS highly likely" and doctor thinking that this is PANS, we feel it most likely is, but hate that we can't be 100%.

 

Any insight appreciated!

[qannie47]

Hi Mom in DC. My first instincts is to tell you that if this is only her second Pandas episode, your child will probably require quickly. Maybe two to three weeks from onset of symptoms...you should also see improvement at the end of the second week of antibiotics. 70% reduction... My ds had strep and stomach flu back to back, but it was third episode, and the stomach flu lasted on and off for two weeks. I believe that it was because his immune system was already compromised from the strep as well as he was not fully recovered from strep induced episode so this complicated things...made it harder for him to recover. This set of dynamics could make it harder for your child to recover/take longer because of the bigger hit against his brain. My ds unfortunately took eight weeks to recover. I would recommend starting a probiotic. This will help his system recover faster, especially from the stomach flu. Florestar is great brand for kids. It also helps with the GI upset brought on by the antibiotics.

[pr40]

if dd recovers so quickly, you are extremely lucky, i'd say. for most on this forum, recovery is years long. 90% is a success. recovery requires not only abx but also help with metyhlation and reduction of various inflammations through diet and life-style.

[Crunchfly]

My ds's tics initially got worse on Augmentin, but by the end of 2 weeks, they had gone from constant to completely gone. They have since snuck back in to a degree, but they are still so much better. His other issues have remained improved since his last bout with strep and subsequent treatment with Augmentin. Tics are tricky little things. Even a mild stuffy nose can bring back his nose tic, and grinding his teeth at night can bring back the jaw tic, but even then they're very seldom. The tics have never returned to the constant and relentless state that they were before antibiotics.

 

We also had a quick diagnosis, and beginning to treatment. It was less than 2 weeks from the first tic to bloodowork and starting antibiotics.

 

Hang in there. Hopefully improvement is just around the corner.

[momindc]

OP here. Thanks for the replies. Unfortunately we did not catch and treat this super quickly. DD's tics and other issues started abruptly in March 2012 but after seeing docs at both John's Hopkins and Children's Hospital in DC we were told she just has tics and hopefully she'll eventually grow out of them. They were so bothersome to DD (in particular the neck and abdominal jerking) that we treated, against our wishes but to help get her relief, with Clonidine and then later added a small dose of Clonanzepam as needed only for flares. After terrible bouts of frequent urination in Feb. and March and my feeling like we needed to get a second opinion on meds, we ended up making an appt. with Dr. L, who at the time we did not know was a PANS/PANDAS specialist. Dr. L suspected PANS right away and asked us to do bloodwork and to take the Cunningham test. That all took time, and after DD's Cunningham results of "PANS/PANDAS highly likely" and a review of all medical records showing history of multiple strep infections, etc. since about age 5, we got the PANS/PANDAS diagnosis in June. I wish we had treated earlier. This all leads me to the question of - given all that - based on your experiences of maybe also a somewhat late diagnosis, what might we expect to see in terms of the course of improvement with antibiotics? With motor tics in particular? You all are so helpful - thank you for any thoughts! We are pretty new to this all.

[PowPow]

My daughter had a year of tics, mostly vocal, starting around age 5or 6. She was tested about a year later with a month of steriods and zithro. They were gone by the end of the month.

They did not stay away, though, they returmed and now has motor tics more than vocal, about 6 months later. This has repeated itself two more times. She is now 8&1/2 and tics are just coming back again.

Edited August 5, 2013 by PowPow

[LNN]

In my experience, there's no easy answer to your question. Different symptoms subside at different rates for different people. For those with tics, they seem to linger longer than other symptoms but you can always find exceptions. The key is to find the right antibiotic(s) for the specific infectious trigger your DD. No one can say "zithromycin is best' or "augmentin is best" - they're both "best" if they're used for the infection that's vulnerable to that particular antibiotic. Sometimes it's trial and error. Some kids do better on a combo of antibiotics.

 

In general (again, there are no absolutes), if you eradicate the infection, you should see things calm down considerably over a period of weeks (maybe 3-8?). If things don't resolve significantly, you need to either try new abx or wonder if you've completely eradicated the infection. In that case, you consider a tonsillectomy or test for chronic infections like mycoplasma or lyme or bartonella or yeast.

 

My son was once a huge ticcer. Could not hold a glass of milk without sending the milk shooting across the room. He had to revert to sippy cups at the age of 7. He had both strep-triggered Pandas and lyme-triggered PANS. He is generally tic-free now but they resurface when he has some sort of infection and is having trouble clearing the toxins that get released when bacteria die. Strep, lyme and yeast release these toxins and he has trouble de-toxifying and handling the inflammation that occurs during the die-off. When he clears the toxins and the inflammation subsides, the tics go away. they are his coal mine canary.

 

I know you'd like concrete answers on what to expect. I think the not knowing is one of the hardest parts of coming to terms with this disease. But I have a number of old-timer friends on this forum and if you sat us around a table, we'd all have a different tale to tell on how we got our kids back to baseline. Few travel the exact same path. This forum is a great resource and a great support. But you need to view all of the advice as a buffet table, not a "how to" script. We can all offer ideas and experiences, and some will really help your child. But other things wont. Some kids do great on one abx or supplement, other kids get worse n the very same thing. Some people connect with one doctor, others have bad experiences with the very same doctor. Your story will be unique even tho you'll share some things with many of our kids.

 

If it's any consolation, my son went a year without proper medical support before we found Dr L. With her help, he got significantly better. But not 100%. We then found lyme and with the help of an LLMD (lyme literate MD), and yrs of treatment, he is now off antibiotics and has almost achieved full remission. (he is fighting some sort of gut imbalance that's triggering some mild OCD but I'm confident we'll nix it in time- he's about 98% at the moment). He remains vulnerable to strep and PANS, but you can get them back to a good place where they can thrive. A delay in diagnosis or treatment is not a death sentence. It just takes a lot of time and digging for answers that are unique to your child.

Edited August 7, 2013 by LLM

[MMC]

I second what pr40 says...it can take years. After 4.5 years, DS15 is still trying to recover. He has never recovered from his tics, they just move around. His OCD is actually worse, but mild compared to others that I read about. Our DD17 has recovered 90%, but her symptoms were never as bad as DS's. So, I think it depends on each child, and the severity it hits them.

[momindc]

OP here just checking back in for some more advice. DD has been on the Augmentin now for about 3 1/2 weeks. Her overall mood has been improved since being on the omnicef and now augmentin which is good but her tics are bothering her again (maybe some improvement in the tic dept. overall, but not much - neck tic back and bugging her) and her hyperactivity has been bad.

 

We see a dr. at Georgetown tomorrow morning at Dr. L's request to discuss the merits of taking her tonsils out and then are supposed to check back in with Dr. L.

 

I feel like we're not seeing enough improvement with Augmentin as we should at this point? Thoughts? Suggestions? We've not discussed lyme with Dr. L beyond DD's Western Blot testing which Dr. L ordered which was all negative, but would you suggest to dual track here by also trying to get in with an LLMD for further testing to see if lyme could be an issue? DD was bit by a tic back in the fall of 2011 and the tic nightmare began in March 2012, although it did not appear that she had a bulls-eye develop or anything.

 

Feeling frustrated today as I don't feel like we're making much progress.

 

Thanks for your thoughts. If lyme is worth looking into, anyone have a recommendation for a LLMD in the DC area?

[rowingmom]

I would suggest testing for lyme and all co-infections (even if lyme result is negative) with a LLMD. DD's ticcing started approx. 1 month after an insect bite which left a 1 in diameter red rash with bright red border. There was no EM rash. We never found the insect, and assumed the bite to be a spider bite. Her ticcing was caused by bartonella.

[pr40]

what lyme test did you do? IGENex seems most precise. I would do that just to make sure. Tics are the more persistent symptoms for most kids. I would hope for reduction of tics and them becoming less intrusive but, again, over a longer period of time.

Nothing happens in three weeks in this world, as far as I know.