PANS treatments - please help

[JaneFBH]

Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mostly dairy free but she is a picky eater and so has a lot of carbs. Trying to get her off sugar and carbs but taking the meds is easier when she has something sweet (nutella is her favorite chaser, also soy choc milk mixed with plain almond milk).

 

Questions:

Does anyone have any ideas/thoughts on antibiotics she is taking? Seen an increase in tics/anxiety/rages on these drugs?

Read some kids have increased tics with Omega3 - maybe stop that?

Any luck with steroids?

Does anyone report ANY relief from just doing nothing - no meds, no discussion, just ignoring tics? All my daughter's anxieties and tics got 10x worse once I actually started looking into it and treating it. Started therapy. But scared to not treat myco and strep after reading Saving Sammy and online info.

 

Any advice would be so helpful. Thank you. Bless you all for this forum and for your information.

 

 

 

[MaryAW]

During a flare Ibuprofin can help. I give my DD 2 doses a day. You should consult with your pediatrician before doing this. Make sure you check her Vitamin D level and get it up to between 50 - 80 (recommended by most PANS/PANDAS docs). My DD takes Azythromycin and we have had great luck with that. I give her 2 doses of probiotics a day - Florastor and Culturelle (not within 2 hours of ABX is best). Change things one at a time, so you know what is working/not working. Good luck.

[smartyjones]

we have found short-term relief with motrin also.

 

I do not think ignoring anxiety will be helpful. as troublesome as it is to confront it with therapies and strategies, I think ignoring only makes it worse.

some things we have found helpful -- The Explosive Child by Dr. Ross Greene; Social Thinking by Michelle Garcia Winner -- you can google both; and 6 step problem solving.

 

it is interesting that ds often has a different 'goal' than everyone else involved. as in, 1-define the problem; 2 - define the goal; 3- list possible solutions. of course, he has vastly different solutions than anyone else if he has a different goal. if you do not realize this, he appears to be obstinate and completely unreasonable and only gets angrier because no one understands his perspective. when you do understand it, he is only trying to find ways to reach his goal. it's not so much his solutions or stubbornness that needs to be adjusted, but his goal. once we agree on a goal, the rest usually falls into place. this is our situation now, as he is in a healthy state and we have been working on this for a while -- but we did begin some time ago and it still did make things easier.

 

if she is having anxiety about something, her goal may be to avoid it at all costs -- if your goal is to power through -- you're going to have a very difficult time getting anyway. if you can first agree on a goal, it may make things easier.

[cara615]

When I first "clued in" to what my ds may or may not have, things got worse very quickly. DS was first diagnosed with TS, OCD, ADHD and anxiety. So I immediately started with diet elimination, supplements, anti-virals for killing yeast, lots of blood tests and HANDLE therapy. i pretty much threw the whole kitchen sink at him and his tics skyrocketed. Looking back i believe that was his first true PANDAS episode (may 2013).

 

After about 3 months of working on diet and supplements we got him to almost tic free and no other signs of behavioral problems. No OCD, no ADHD, no anxiety. he started school and was doing great.

 

Then in Nov he had his 2nd episode (just tics this time) and that is when we got the dx of PANDAS. We started abx (amoxicillan, then keflex then azithro) and there was improvement but it was so slight and gradual. It would be two steps forward one step back. Every day was this dance until about 30 days in on the abx we were able to see that his tics reduced significantly. It was hard to tell day from day because the improvement was so slight. By the end of Dec he was practically back to baseline.

 

Then in January he had a minor flare (he is on long term azithro now) and we are currently still in the flare. Some days i think its pretty much over and then the next day his tics increase in frequency again. The interesting thing with the flare is that the intensity of the tics does not increase, just the frequency of them....

 

Perserverence is what I am learning on this long PANDAS journey. i still don't know if ds has any co-infections, right now we just tested and are treating STREP.

 

i guess you really need to give it those 30 days in order to determine if the abx is working for your DD or not.

[pr40]

one thing to add to the previous responses you got, herxing. at the beginning of abx treatment, there is a sudden die-off of bacteria which may cause herxing reaction. it should pass with few days to a week. you may want to read about it.

when we are looking to measure if abx are working, we do so, as cara615 suggests, over a longer period of time. the question is, if after month or two on abx you see slow and gradual improvement or not. if you do, then perhaps this is PANS and abx might be the right treatment. you'd asses it again after 6 months and so on. if kid is getting worse, you would try IVIG. at any rate, getting on board with a PANDAS specialist is the best thing you can do since they will help guide you through treatment.

[Mommy2MCL]

One thing I have learned is that this takes patience.... I was here two nights ago because we were having problems with behaviors and tics. I got so many good ideas.

 

Also have you taken her in to see if she could possibly have a new infection?

 

Also, my thought on doing nothing is that I would want to make sure the infection was cleared 1st. With PANDAS any chance her immune system is compromised she could flare.

 

Just another thought, my daughter has had two flares due to teeth. One was a crown and the other was a tooth breaking through. Perhaps something along those lines.

 

Good luck!

[Dedee]

We have struggled with Mycoplasma with two of our kids. The best thing we did was find an LLMD who got us on the right track. It sounds like your physician knew what he was doing when he started you on the Biaxin. Biaxin works good for Mycoplasma especially when in combination with another antibiotic. Zith is not as good and the Amoxicillin is only a supplemental antibiotic, you would do better with Rifampin. One of the best moves you can make at this point is to concentrate your energy on teaching her to take pills. I completely understand where you are coming from. When we started this with my daughter 3 years ago she would not take any medicine of any kind. Nothing...nada....zip. We started off using Zithromax cream from a compounding pharmacy and taught her to swallow mini M&M's. This did take some time, but you have to start the healing process somewhere. She would never even consider any sort of liquid antibiotic. She would immediately throw it up. You can really start making progress when you can start getting her to take pills.

 

I would not recommend ignoring Mycoplasma. The longer it hangs out in the body the more body systems it will invade. It is a stealth pathogen and hides out in many different areas of the body. It can lie dormant, but the longer you have it the harder it is to get rid of. Do some research on Mycoplasma. Dr. Garth Nicholson has done a lot of good work in that area. This is nothing to fool around with. You need to be aggressive in treatment. Best of luck.

 

Dedee

[airial95]

On the Omega 3 - be careful what supplements you give, check to see if they also have Omega 6 (many do). Omega 6 can actually CAUSE inflammation, which can be a problem in our kids which could be the reason for increased tics.

[JaneFBH]

Thank you so much everyone for your responses. Great ideas. I agree talking about goals is good. Pill swallowing - yes. I will stick with the meds. Thank you all. Patience is hard for me but I will try.

 

Does anyone have any stories about changes, for the better, after the onset of puberty?