staph infection?

[needcoffee]

I have two children with PANDAS. They are biological half siblings and we adopted them from the foster care system. Both were prenatally exposed to multiple teratogenic substances during pregnancy, including alcohol. Both are diagnosed with a Fetal Alcohol Spectrum Disorder (FASD) and have significant behavioral and learning differences from the alcohol exposure. A PANDAS episode brings these behaviors to a whole new level.

 

We discovered our 13 year old son's PANDAS when he was 6 years old and our 9 year old daughter had her first episode in the summer of 2010 when she was 8. Our daughter had a positive strep culture about a month ago and the behavioral symptoms (especially separation anxiety, raging and aggression) were quite severe. Thankfully they are subsiding. Because of his susceptibility to strep, we treated our son with antibiotics at the same time even though we didn't culture him. We were off antibiotics for about a week when our son started raging again at school and having "brain stuck" behaviors at home. This is always our signal to test him so we had another throat culture done. It was negative for strep but positive for high levels of staph. Should we be calling this PITANDS instead of PANDAS? Has anyone else had PANDAS type reactions to staph infections?

 

Our children have complex needs because of their co-morbid FASD and PANDAS. The digestive and immune system can be damaged by prenatal exposure to alcohol, although most resources concentrate on the central nervous system damage. We have no one professional who understands the whole picture so we've put together a piecemeal team of professionals, including an osteopath who is working with us on the digestive and immune system issues (using probiotics, supplements and other nutritional interventions). We went gluten and casein free 9 months ago and have experienced some good results but these recent infections have caused me to feel rather defeated.

 

I guess I just needed to check in here to be reminded that we are not alone.

[dcmom]

needcoffee-

 

the infections can certainly derail things (both of my pandas kids had strep in April)- but the fact that you caught it right away, and treated, is a positive thing. If steroids are an option for your kids- they might be worth a try. We find our girls need something, like steroids, to tamp down the immune process.

 

In any regard, time always seems to be part of our healing equation- so try to be patient- and your are most definitely not alone.

[needcoffee]

needcoffee-

 

the infections can certainly derail things (both of my pandas kids had strep in April)- but the fact that you caught it right away, and treated, is a positive thing. If steroids are an option for your kids- they might be worth a try. We find our girls need something, like steroids, to tamp down the immune process.

 

In any regard, time always seems to be part of our healing equation- so try to be patient- and your are most definitely not alone.

 

Thank you for your supportive words, dcmom. We've been through some pretty difficult PANDAS episodes before and I try to be patient but the chronic nature of this with my kids has me feeling rather exhausted. We had 5 positive strep cultures for my son between May 2010 and Jan 2011. He was unable to attend school full days for the entire 2010-2011 school year and police were called 3 times in the spring of 2010 to his school because of his severe raging. Both of our kids are in special education so we've used shortened days, modified schedules, homebound services, etc..

 

The constant antibiotics are increasing the digestive problems (leaky gut syndrome) and it just feels like we are stuck in a revolving door. A recent test of our daughter's immune system function indicated that she has significant impairment (the results should have been between 400-880 and hers was 87. Our son's was higher but still considered very low.) We are hesitant to use steroids because of past incidents of steroid psychosis.

 

We were doing so well with the nutritional interventions that we started in Feb 2011 and didn't have a strep infection until this fall. Now we've had strep followed by staph. I guess it just hit me harder this time. Thanks for the support, I needed it.

[dcmom]

have you considered IVIG? (we haven't done this, but if the immune system is impaired, it may make sense, and you may be able to get it covered).

[needcoffee]

have you considered IVIG? (we haven't done this, but if the immune system is impaired, it may make sense, and you may be able to get it covered).

 

I asked our two main doctors about it but neither is familiar or comfortable with this option. I emailed one of the two experts I've read about in PANDAS research and he told me that my kids' FASD complicated matters significantly as it would be difficult to determine "which symptom was caused by what". We have felt very much alone in this.

[airial95]

With 5 strep infections in a year, has he had a T&A? I feel like we're on the same merry-go round, haven't been able to be strep free AND off abx for more than 6-8 weeks at a time since Jan 2010. We're heading for T&A next month as a result.

[needcoffee]

With 5 strep infections in a year, has he had a T&A? I feel like we're on the same merry-go round, haven't been able to be strep free AND off abx for more than 6-8 weeks at a time since Jan 2010. We're heading for T&A next month as a result.

 

Our pediatrician suggested it in Jan 2011 but then we cleared the infection and remained infection free until this fall. I have a call in to him now to talk about where to go from here. Our DO (doctor of osteopathy) ordered an extended GI panel this summer and it indictated moderate levels of pathogenic alpha and gamma hemolytic streptococcus in our son's intestinal tract. We've been using probiotics to reduce those.

[mama2alex]

Yes, my son has staph in his nasal passages. Our Lyme doctor figured it out last spring and treated it with BEG nasal spray. We saw significant improvement in "bipolar-like" symptoms. Then we stopped treating for a while and cultured him after a couple of months off the medications. He was positive! We went back on the BEG and added Rifampin as well, but my son had such a severe uptick in anxiety and moodiness (doctor feels it was die-off), we stopped both medications and he was back to baseline within a few days. He's back on the Rifampin now and we'll add the BEG spray back in after two weeks. We've also increased detox support. What a battle.

 

I'm curious, how is your doctor treating the staph? I'd recommend retesting after treatment, because in our experience, it is not easy to get rid of.

[hugs2day]

my son also suffers chronic staff in nasal passages he was treated with bactroban in nose and keflex as a 2nd antibiotic it helps tremendously and then will resurface about 6 to 7 weeks later. This last time the doctor also added Flagyl because he said staph can live in the intestines, that was a major major help brought us some really good behaviors and he lost his fear of leaving the house and social anxiety. I'm mot holding my breath its cured but I think we went a step in the right direction.