New here - seeking answers for 12yo with PANDAS?

[Looking4ward]

Our 14 year old daughter had nearly identical symptoms and we went the same route as you have (psych doctors, meds, etc.) initially, but my sister stumbled upon another miserable mom who listed her wide array of symptoms also exactly as those that her son who was diagnosed with PANDAS. The top of our list was severe separation anxiety, followed by OCD, tics, mental anguish and ADHD, extreme sensory issues, the urgent need to use the bathroom often, and the list goes on. It has been a nightmare and I could write 3 books, but in short, she has been on a high dosage of AmoxClav for over 2 months and all of our lives have improved. We, too, were told that we would only get a 2-week rx for antibiotics from our Chicago doc, but we can not immediately afford the IVIG treatments and we were not going to leave her in limbo. While there are no doctors around us who treat PANDAS, we found a NP that is a total believer and prescribed antibiotics for us until we can afford to move forward with IVIG.

 

I agree that you just have to listen to your "mom's intuition" voice and go with what you feel works best for your daughter. Good luck to you and keep us posted.

[nicamom]

Wow Looking4ward - that is wonderful! When you say "high dose" what exactly dose are you talking about? The ped put my daughter on 250mg 2x day for 6 months. How does that compare with what you were prescribed?

 

Also, have you see the ADHD symptoms resolving too?

[DeterminedMomVA]

As a point of reference, in terms of dosage my 10yo DS (70 lbs) has been on 500mg of Augmentin 2x per day (so a total of 1000mg per day) for almost three months now for a chronic sinus infection. It made an immediate, remarkable difference in PANDAS behaviors, but a cold and possibly a few loose teeth over the last 2 weeks have caused a remission, despite continuing the antibiotics. We are pursuing IVIG at this point, but it will take a while to get it approved by insurance (fingers crossed) and scheduled.

[Dedee]

Just throwing in my humble opinion here. I strongly agree that this seems like a straight forward case of PANS to me. All the symptoms are by the book. Your daughter is older and so you need to jump on this treatment very aggressively. Do not let anyone talk you out of antibiotics. If you do not get relief after two weeks on the Amoxicillin then you need to insist on something else. It would not be unusual for a PANS child to not respond to that dose of Amoxicillin. Augmentin, or Zithromax are other good choices. If you are only dealing with strep then Augmentin works very well. If you suspect that another infection is involved, you will need to look at something like Zith or Biaxin.

 

Continue to hang around here and learn as much as you can so that when you leave for your trip you will be armed with information. You can make the right choices for your daughter over seas but you need to fully understand what you are dealing with. Also, make sure where ever you are going you will have access to antibiotics and any other medications she may need during your stay.

 

Sorry If I sound bossy....Just offering my suggestions if I were in your situation. Best of luck.

 

Dedee

[fightingmom]

Wendy, I think your daughter is my son's long lost sister. Very similar symptoms, escalating at same time of year, down same path, short hospital stay, psych meds 9even some of the same ones or same recommendations), psych diagnoses, etc.

 

We jumped off the psych ship before trying lamictal - it was probably going to be next on our list to try, but a really bad SSRI experience took us off that train. However, I have researched it and it seems to help inhibit the reuptake of dopamine. I believe my son is actually suffering from imbalance of dopamine, and likely that levels are low - or getting misdirected somewhere along the way and not hanging out where it should be, so it's effectively low - even if it is "there". Low dopamine is often a cause of anger, rage, addiction, impulsive behavior, be extremely hungry (my son) OR be stricken with nausea and have fear of eating because of it. A lot of focus seems to be put on serotonin, but in reality, dopamine is a key player and bad things can happen if levels are too high or too low. Dr. B. also told me that dopamine is affected in PANDAS kids, I had already suspected that, but he confirmed it.

 

Here is a link I have saved from a while back that really helped explain it;s role in layman's terms --

www.pdrecovery.org/publications/once/medications_chapter_07.pdf

 

Point being, with your daughter's symptoms and how they remind me so much of my son, it does not surprise me (based on our experience and our reading) that the lamictal seems to have had the most impact. We also have seen the best resolution with anti-inflammatory meds. No doubt in my mind that inflammation of his brain is an issue. You experienced inflammation in the gut. There is a huge gut/brain connection. Coincidence? My feeling is no.

 

We are currently on augmentin and zithromax. Zith was added about 3 weeks ago. So an immediate improvement (overnight) - believe it's partly due to the inflammatory properties, as I haven't had to give him ibuprofen since the day we started the zith and I had been giving it everyday. It could also be helping with MycoP infection that seems to be running through our family, but not sure.

 

Hang in there. This is a long ride, I don't have half the answers, I just know that your experience sounds eerily similar to ours and i feel for you.

Edited May 4, 2012 by fightingmom