pandas vs clostridia vs parasites

[ally]

Hi everyone,

 

I am new to this group and recently concluded with the help of my dan that my son has PANS. He had an upper respiratory infection towards the end of february and within 1 1/2 weeks, he had a sudden onset of walking on heels, piano playing like movements of fingers, worsening of ocds which he has on and off but this time it was non stop like facial tics. He developed severe anxiety and mood swings with frequency of urination. His handwriting skills which are not great to begin with were also affected. We placed him on a ten day course of zithromax along with advil. He responded with reduction in anxiety and ocd but symtoms didn't go away. Dan told me to stop the zithromax and continue anti inflammatory in the form of celebrex. After 5 days of celebrex, my son developed severe heartburn and stomach ache. I stopped celebrex and added antacid. He lost his appetite because of reflux and again developed frequency of urination, anxiety, resistance to change, aggresion and screaming tantrums. He still walks on heels if without slippers and this never left him even when on antibiotic. So after talking to other parents, I restarted zithromax and after day 5, he has some reduction in his symptoms and he started going back to school. His reflux is gone. But we havn't gotten rid of agitation if his wish is not fulfilled and we cannot place demands on him. He is following routines. He has a bloated belly and is passing a lot gas. His stools smell foul. Now I am confused as to whether he had a parasite thing going last week as there was full moon and now his symptoms are better as the full moon has passed. Or we are dealing with clostridia or other gut bugs which are giving aggression and ocd and zithro is only partially treating the bugs. Our dan has recommended alinia as his symptoms are more related to gut. Any ideas?? Please help me figure out what I am dealing with here? Could it be PANS related to some pathogen/allergen or clostridia/anaerobes or parasites. His appetite is back now and he is very hungry this week which probably goes against parasites as he should have been very hungry last week. Forgot to mention that his ASO and DnaseB titers are negative. So confusing.

Edited April 12, 2012 by ally

[sf_mom]

Per our Dr. parasites tend to activate during full moon... hence increase in symptoms. We also find extreme changes in altitude to be problematic for similar reasons. Certain bugs tend to activate in lower oxygenated environments while others die off.

 

For us, our son's bloated stomach was a clue to underlying issues. 2 years ago we ran a comprehensive stool analysis and food allergies via Metrametrix and found an intestinal parasite, yeast and severe milk allergies. Most recently his belly was bloated again, we reran tests and his yeast problem has returned but his food allergies have greatly improved.

 

Our son was also diagnosed with several chronic infections through out our journey and placed on a combo of antibiotics. Alinia was one of the antibiotics he was on for approximately six months in combination with others. It is a fantastic anti-parasitic, anti-microbial and anti-viral and we saw huge improvement from its usage. We also had a herxheimer response (worse before better) to Alinia when initially starting treatment.

 

For us it was numerous things that caused our son immune system to go haywire. Although his PANDAS/PANS was initially trigger by strep we found so much more when we tested him appropriately. Here is the list of issues we found: HHV6 'virus', Coxsackies 'virus', XMRV 'virus'. EBV 'virus', Lyme 'bacteria', Bartonella 'bacteria', Babesia 'parasite', Strep 'Bacteria', Food Allergies, Mineral/Vitamin deficiencies and more. Like us, you could easily be dealing with multiple issue and will potentially take further investigation.

 

I am positive your DAN would be happy to run a comprehensive stool analysis and food allergies to help confirm driving issue behind bloated belly.

[hugs2day]

Liquid dye free ibuprofen might be easier on your son's stomach with lots of water and food. My son had terrible stomach pain when in pandas episodes, but treating aggressively helps him get through quickly.

 

PANDAS always gives my kids gastro symptoms if in exacerbation. My oldest usually gets gerd I treat with pepcid or alka seltzer gold. My youngest severe constipation much like you described your son. Oxypowder works great.

 

I have treated clostridia with flagyl and it helped tremendously. In my experience with my son I always thought clostridia smelled like ammonia and metal.

 

A stool test from a specialty lab will help figure it all out, but meanwhile you could try SAch B. Sacchromydes Boulardi will help with yeast and clostridia problems and is a good probiotic in general.