cara615 Posted December 4, 2013 Author Report Share Posted December 4, 2013 We are on day 2 of azithro and his tics are lessining. i thought i would see a spike but no. he had some emotional lability and a little OCD over clothing but that is gone now. It was for a day. Praying we can find a doc that will work with us that doesn't cost us a fortune. the new one I called is $450 an hour and doesn't take insurance. WTH? Link to comment Share on other sites More sharing options...
JoyBop Posted December 4, 2013 Report Share Posted December 4, 2013 If you have no other option it might be worth going but clarify upfront how any months of abx he will give you at a time. We have one dr that writes for 1 year of refills. Other drs do 3 months and some do 6. They are all different. Link to comment Share on other sites More sharing options...
mdmom Posted December 5, 2013 Report Share Posted December 5, 2013 A few things to keep in mind.... 1) Unfortunately, many of us here travel far and pay out of pocket to see doctors that are willing to treat our children with PANDAS/PANS. The most important thing is to get help now. 2) Strep is only one of many triggers of PANDAS/PANS. Work with your doctor to look for other triggers - viruses, tick-borne diseases, mold, etc. 3) Make sure your son's doctor checks immune function - some children with PANDAS/PANS have underlying immune deficiencies. 4) If you pursue IVIG, do not call your insurance company and tell them that your child has PANDAS. Most insurance companies do not cover IVIG for the diagnosis of PANDAS - in fact, some companies specifically list this as an excluded diagnosis in their policies. Some docs have had success in getting it covered under an post-infectious encephalitis dx, some use immune deficiency codes. nicklemama 1 Link to comment Share on other sites More sharing options...
cara615 Posted December 7, 2013 Author Report Share Posted December 7, 2013 mdmom - great advice. We found a leading PANDAS specialist in my area Dr. Fier that is only $250/hr! I will ask him to expore co-infections and immune function. our holistic MD (based on extensive testing) suspects leaky gut, methylation dysfuntion and mito dysfunction. She thinks the mito dysfunction is caused by poor absorbtion of nutrients due to the leaky gut. My son has no symptoms of mito at all. We have treated the leaky gut, yeast and methylation with great success so far. This ofcourse was before we realized it could be PANDAS. So now we are just trying to figure out what the PANDAS triggers are. I have not really given IVIG a thought at this point. I was thinking more about keeping him on long term antibiotics and continuing to treat the yeast, leaky gut an methylation. Hoping that if we can keep the inflammation down that maybe one day his immune system will mature. rowingmom and cobbiemommy 2 Link to comment Share on other sites More sharing options...
qannie47 Posted December 9, 2013 Report Share Posted December 9, 2013 Does this mean your dumping the $450 an hour guy? Not wanting to start a negative thread, but I hope so. I really like mdmom's advice..especially the insurance tip...been there, done that....wound up paying. Luckily, we have coverage now because of the O bands...but that is a double edges sword.... Good Luck! You sound like you are really doing your homework and have caught this early....so now I have to say, I just have too, we all have our own individual mantras....please think about IVIG.....the research really does support it. Link to comment Share on other sites More sharing options...
cara615 Posted December 9, 2013 Author Report Share Posted December 9, 2013 (edited) qannie47 - yes $450/hr doc has gotten the boot. Didn't even fill out the paperwork! I feel good about the $250/hr one because he is considered a leading PANDAS physician by PANDAS network. He is a psychaitrist and was at the conference in RI this past fall. As for IVIG, not off the table at all. I am absolutely considering it. I just need to learn more about it and understand what our expenses will be. I do want to learn more about my son first too (i.e. coinfections, immune disorder, etc). Once I have all the cards on the table, we will consider ALL treatments for sure. I just have to say that this forum is truly an amazing place. You ladies and men are all SO knowledgeable, moreso than most docs. And I know you have to be! When you are an advocate for your child, you jusr have to be. Edited December 9, 2013 by cara615 Link to comment Share on other sites More sharing options...
3bmom Posted December 9, 2013 Report Share Posted December 9, 2013 The moms here have such great advice. I just want to say strep is not always present in the throat or hides there extremely well. We only had one positive swab and never have had a sore throat. It also likes your sinuses too. Your mommy instinct is the best. I understand your Dr wants that definitive test but clues like ibuprofen are invaluable. Don't forget viruses too... The PANS piece. Once we treated the virus HHV 6 he could get rid of the strep. Link to comment Share on other sites More sharing options...
3bmom Posted December 9, 2013 Report Share Posted December 9, 2013 I missed a few pages when I answered the above post. Sorry! Glad you found a Dr willing to look at everything. Two things hit me when I read everything. We found a lot of our bumps were from diet. Even this week we had a grumpy morning which can be usual for a teenager but then found out he ate pizza with friends the night before.... Dairy, wheat, yeast and nitrates in pepperoni. Huge piece of the puzzle. A lot of countries label food from the US and some ban it. The other thing is after 6 years of living and observing PANDAS I strongly suspect one of my DS classmates is a carrier. The 3 major flares over 6 years they had class together daily. You said your sons tics are always worse by Friday and there is a child who has a brother with PANDAS. By any chance has the mom tested the non PANDAS child? It might be a long shot but everyone in the family should be checked. Glad you are doing so much better! Link to comment Share on other sites More sharing options...
jferinga Posted December 9, 2013 Report Share Posted December 9, 2013 (edited) The moms here have such great advice. I just want to say strep is not always present in the throat or hides there extremely well. We only had one positive swab and never have had a sore throat. It also likes your sinuses too. Your mommy instinct is the best. I understand your Dr wants that definitive test but clues like ibuprofen are invaluable. Don't forget viruses too... The PANS piece. Once we treated the virus HHV 6 he could get rid of the strep. How did they come to HHV6 and what were the symotoms? Edited December 9, 2013 by jferinga Link to comment Share on other sites More sharing options...
cara615 Posted December 9, 2013 Author Report Share Posted December 9, 2013 What is HHV6 and what types of antibiotcs to they give to treat it? BTW - we got the blood tests back and ASO was positive (no number given) and anti dNase-B was over 700 (normal under 200). So doctor is convinced its PANDAS however she is holistic and does not like long term abx useage. That is why we are going to another doctor. Holistic dr recommended CBT instead of long term abx! I laughed at her because my son's major issue is really just the tics. And at age 5-6 CBT will do a whole lot of NOTHING for him. Ugh. Link to comment Share on other sites More sharing options...
anonymous0121 Posted December 10, 2013 Report Share Posted December 10, 2013 PANDAS is a clinical diagnosis. There is no one such 'test'. It's the bigger picture of many symptoms and behaviors. A child getting better on abx is one such clue. You really need a doctor who understands PANDAS to make the determination but I'd be inclined to say if symptoms get better on abx that's definitely pointing in the direction if PANDAS/PANS. And the antibiotic that finally gives some resolution is a clue as well. If strep abx aren't working after some time, look for different infection(s) that may be causing the PANS/PANDAS reaction. DD tested positive for bartonella, but treatment for cysts/protozoa is what gave her lasting improvement. That along with MTHFR support. Medicine hasn't gotten to the point yet where all infections can be properly diagnosed. Doctors are only now figuring out that gut bacteria are a very important piece of the immune system. Medicine isn't as advanced as we would like to think it is. The key is to find resolution not the exact cause, which could be any combination of genetics, gut health, immune status, toxic load (pesticides, heavy metals, EMFs) and infection. do you mind sharing privately with me your LLMD? my son and I have BART but we are not tolerating any treatments, adrenal crash and dysautonomia bad... Link to comment Share on other sites More sharing options...
nicklemama Posted December 10, 2013 Report Share Posted December 10, 2013 HHV6 is a herpes virus. This one might be hand,foot,mouth disease but I can't remember for sure. It is known to mimic strep molecularly and so, our children may react to it the same as if they'd gotten strep. Abx will not do a thing for a virus. Link to comment Share on other sites More sharing options...
rowingmom Posted December 10, 2013 Report Share Posted December 10, 2013 Hand, foot, mouth disease is caused by the coxsackie A16 virus. From the HHV6 Foundation http://hhv-6foundation.org/what-is-hhv-6: Human Herpesvirus 6 (HHV-6) is a set of two closely related herpes viruses known as HHV-6A and HHV-6B that infect nearly all human beings, typically before the age of two. The acquisition of HHV-6 in infancy is often symptomatic, resulting in childhood fever, diarrhea, and exanthem subitum rash (commonly known as roseola). Although rare, this initial infection can also cause febrile seizures, encephalitis or intractable seizures. Like the other herpesviruses—Epstein Barr virus, varicella zoster virus, etc—HHV-6 establishes life-long latency and can become reactivated later in life. This reactivation has been associated with many clinical manifestations that can be seen in the “Associated Conditions” section of this site. I didn't know varicella zoster (chicken pox) was a herpes virus. Link to comment Share on other sites More sharing options...
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