Stephanie2

We have been dealing with PANDAS for over 3 years and didn't get a dx until recently (my son is 5). We have been through multiple specialists/dx's/treatments and spent about $20,000 so far before even getting a dx. I also believe that my 18 month old has it. Anyway, my husband and I are so stressed out and my husband turns his frustrations toward me: the house is not clean enough, I should discipline better (he hasn't fully accepted the dx yet), I don't give him enough attention, etc... He has also developed a temper in the last 9 months b/c things have been so intense around here. He yells at me and my 5yo. He gets mad at me when I am stressed out (which is all the time). I have asked him to leave the house and go stay with his parents until we get my son's issues resolved. I told him that I just couldn't take the pressure he was dishing out. Of course, he refused to leave and quite frankly I don't know if I could handle the kids myself anyway. Then I asked him to go on an antidepressant (I am already on one) to ease his anxiety and tone down his temper. So far he is refusing to do this. I guess there is really no good advice anyone can give me. It's just a bad situation and it won't change until we get control of my son's PANDAS. I just needed to vent!!

Glad to see that I am not the only one wondering about this. My 5 yo def has PANDAS and I strongly suspect that my 19 mo has it as well. But - get this...I think that both of my neices have it too! They have both had rapid onset OCD or separation anxiety lasting 3-6 months. I didn't know about PANDAS at the time, but the behaviors baffled my SIL. Now looking back I think that it was PANDAS. I mean, what else would it be? Not to mention, they were def exposed to strep through my 5 yo who had untreated strep at the time (this was all pre-dx). So, there must be a strong genetic link. Here is a question I have been pondering! Does anyone think that PANDAS is worse in boys than girls? It seems like my neices behaviors were less aggressive/rage-like than my son's. Both of my boys have serious meltdowns and my 5 yo has serious rage. Any thoughts?

I have found that MANY doctors feel the same about probiotics with strep strains - that it's just a rumor. Here is my 2 cents: we were prescribed a probiotic with a strep strain in it and my son immediately (within 24 hours) had an awful PANDAS episode. It wasn't until 10 days later that I looked at the bottle and saw that there was a strep strain in it. I stopped it and gave him Oil of Oregano and 3 days later he was better. I have "spoken" with many women online who say they see the same problem with their kids who have PANDAS issues. I would STAY AWAY if I were you :-) Florastor is a brand name for the strain called Saccharomyces Boulardii. There are other brands. S. Boulardii is the best strain to give with antibiotics, b/c the antibiotic won't kill it. Also, if your child begins to develop symptoms of yeast (giggling, spacey, wetting the bed...those are my son's yeast symptoms) a 10 day round of Diflucan helps. This is all per my son's DAN doctor. Stephanie

Hi! I have been browsing and thought I would introduce myself and ask a couple of questions. I have been searching for answers for my 4.5 yo for over 3 years now and I think that we have finally found a huge piece of the puzzle - PANDAS! I have had both of my children with a DAN doctor in Miami. While the treatments have been amazing for both of my boys, my 4.5 yo continued to have "episodes" of off-the-wall behavior (emotional lability, ocd, tics, aggression) which I later found were happeneing with strep throat infections. I am also starting to see a pattern with my 18 month old, but not quite sure yet... I have to say that we have done the whole antibiotic thing several times. While it helps almost immediately, there always seems to be a reoccurance of symptoms after the rx runs out and then a gradual improvement after that. Then - BAM - another episode. So, I have experimented with Oil of Oregano and maybe it is my imagination, but it seems to me that I get him back within 1-3 days! Does anyone have any experience with the use of herbs to control this (there is a woman on one of the yahoo groups who used Olive Leaf Extract for a year after zithromax failed. I find that Oil of Oregano works better though). Also, can someone explain how we are supposed to use Advil? Would I use it during the acute phase of the exacerbation? What does it do? Oh, one more thing. It seems like I have obseved a pattern with strep throat occuring 1-2 weeks following a stomach virus with vomitting (seen this 4 times now). Does anyone know what that's all about? Thanks, I have a feeling that I will be learning a lot here! Stephanie