justinekno

Thank you for this information about fish oil. I didn't realize it helped with inflammation. I had asked my son's dr about it a few months back and he said we would look to adding it later on as we had alot of gut issues to contend with. I'll have to bring it up again since the gut issues have been resolved.

I've seen a few people post about giving their kids fish oil. What is the benefit for PANDAS kids?

Is it necessary to remove everything prior to getting the Cunningham test done? Also, just curious, what is the range from Cunningham for PANDAS? I see people post their results but I'm not sure how they play out in terms of range. We are still contemplating having the test done.

this may be a silly question but when you say keep rising for six weeks, do you mean from the time you start antibiotics? Our numbers rose too after being on Penn for 6 weeks. We are now on Augmentin. Hi Santi, Anti-DNAse will keep rising for 6 weeks. ASO will start to fall at 1-3 weeks. Buster

We use these same probiotics but I get them from our dr who is out of state. I'll have to try ordering from Rockwell as their prices are cheaper! We also use boulardii saccharomyces which I give to my son in the morning and nightime (it can be taken at same time as antibiotic). I give the probiotic at mid-morning and then at dinner time. We homeschool though so it makes it a little easier to spread things out. We had alot of gut issues prior to our current antibiotic use so we are over cautious now.

Yea, us too! Although I think I read somewhere that the juice has less salicylates than the actual fruit.

Yea, that might be a better idea - to follow up with the juice just to be sure. Thanks!

Anyone know if it's okay to put augmentin into pineapple juice? I want to make sure I'm not lessening the effect. Thanks.

It was igg. Does it make a difference? I had lyme before I had my son so I am still trying to see if it's worth going down the road of having us both tested through igenex. We are about to do the Cunningham test so I am trying to figure out who to give my money to.

Do you know of any significance with testing positive for band 41 and negative on everything else? I just got my son's western blot results from LabCorp. I already returned the Cure Unknown book so I can't look up my question which I think she talks about?

What great news. I'm so happy for you and Allie.

Susan, How is your daughter feeling today? Justine

Yes, we get red face and ears here too. It is usually if my son has had eggs. We're still trying to figure out other reasons. Justine [

Is there any significance to the anti-DNase-b rising after being on penicillen for almost two months?Our ASO went down (by a couple of points) but anti-DNase-b rose from 1:170 - 1:240. Not much but I'm curious. Justine

I read this book and agree that it is definitely an eye opener. Justine

Sorry to hear that she is sick. My older son (non-PANDAS) had bronchitis after the flu this past winter. The dr at his college said pneumonia but our family dr saw him a few days later and said it was bronchitis. Something about the sounds in his chest. One sounds more like marbles but I can't remember if that was bronchitis or pneumonia. I hope she feels better soon.

We use a powdered magnesium glycinate. I buy it at our dr's office. A good book to read about how to take supplements is Kenneth Bock's book, "Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies". It helped me to understand that zinc shouldn't be given at the same time as magnesium and that magnesium should be given with B-6 and calcium. It should also be given at morning time with meals, if possible. Justine

Can anyone who has seen Dr. Bouboulis PM me about your experience? We are contemplating taking my son to see him and I am wondering what information he considers to be helpful for the first appt. Justine

My son has constant shiners under his eyes and after much testing (sensitivity and allergy) and elimination of certain foods (dairy, wheat, gluten) we have still not figured out what it is. He has them year round. Justine

I'm glad your daughter is feeling better. We have seen a neurologist but not since last year. Our neurologist left the practice this summer and since they didn't really do much except to say that he will just outgrow the tics, I have not been in a hurry to go back. I would like to find a neurologist in the area who is more open to PANDAS and other possibilities. Our integrative dr who is open to other possibilities ordered the wrong strep test and I just realized (two months later) so now I don't know where to go.... Justine

We're new to this so I can't offer advice but I was just curious - how long did it take to get your results back? We are considering doing the test for my son. Justine

I am so mad about this. This somewhat defeats the plan of redoing the test next month to see how the numbers are. We don't have a true baseline to compare to. Ugh. I'm somewhat frustrated that the dr didn't pick up on it. I don't know what to think now.

Is the rash red? We've had it in the past but I could usually attribute it to something he ate (he has a sensitivity to eggs) but not this time. This time it looks different. Hmmm.

Our's does not - just looks bumpy, if that makes sense.

I was just looking through some of my son's bloodwork and noticed that one of his strep tests may be the wrong one. We did the ASO but the other test is listed as "ANTI-dsDNA". When I googled that test is says it is an indicator for Lupus - fortunately the test was negative. Did we get the wrong one?