Joan Pandas Mom

Four sick kids, AHHHHH. I think she is definitely responding to her siblings' strep and flu and trying to heal herself. I hope things get better soon. Last December, my DS took about 10 days post T&A to start to feel better. At 3 weeks his PANDAS/OCD had improved. He was good for about 3 weeks after returning to school, but things started to decline again.

Emerson, I hope it's just the cloudy sky making things a little worse for you right now. I hope it passes quickly. Everything is sooo much better when the sun is shining isn't it?

If you are not allergic to the Cefdinir can you start it until you can get out in a few days? If you start it do you have enough to treat it for 10 days or so? Otherwise, you risk a culture coming back negative because you already started the abx. I'll be thinking of you.

We saw Dr Lee Fitzgibbons for a while too. She was excellent. DS was just way too sick with PANDAS at the time to respond to anything or anyone. She studied under Dr. Edna Foa, one of the leaders in OCD, CBT and ERP, at Univ. of Penn.

Oh, Tenacity what you and your family have been through. Are things any better? Thank you for your post. Would you recommend Plasmaphoresis? I'm hearing that yes it definitely works but once another illness comes along, the kids are back into PANDAS. Do they keep some of the gains? I wish I could go with someone, but I don't have anyone that can come. My fiance works alot and my son's father passed away 2 1/2 years ago. We did 3 IVIG's so far, it is quite the challenge going on my own, I guess I'm getting use to it though.

Anyone know why a first degree relative with a penicillin allergy would exclude a potential participant? We don't qualify, too old, but just curious.

Thanks for this. It is sooo hard to decide what to do. MMC I'm so sorry your son had to go through all of that.

Thanks for this MMC. It is so hard to figure out what to do. I wish you the best of luck in your decision too. What did you experience for bad side effects from the IVIG? We had HORRIBLE turning back the pages with all three. We had bad headache and a little vomiting with 1&2.

Has anyone had PEX? Was it helpful? We are seriously considering it. How do you get home after the PEX? I feel like the airport must be a big germ incubator once the antibodies have been removed. Any advice, help, suggestions? Thanks. Joan

I know of one out there who treated family for a month abx for rising or elevated titers. Has anyone else. Buster, what do you think? Abx or no abx for rising titers without positive GABH culture.

Really confused, pedi's office just called, non pandas son's sensitivity test for strep pneumoniae, that was sent to the hospital, came back mixed flora without isolated pathogens. They don't prescribe for that. Now what? I don't want my son on abx, but I'm concerned about the rising titers.

I'm not sure on how long I should push for longer term abx for my non PANDAS son. I'm curious to see what they put him on. I hope it is today. This must have been going on for about a month now.

Buster, I hope I didn't come across angry. I wasn't AT ALL. I appreciate and respect any advice and knowledge you share. I'm pretty sure my son had SC when this started too.

Hi. Thanks for this, I am in the East. He had a cold, with a cough and slight sore throat about 2 weeks ago. The sore throat went away in a day so i dismissed it because he said he started to feel better. He has had an ongoing cough on and off for about 3 months now (he is 20 and a smoker). He had elevated titers then too. He was on Biaxin for 10 days then, but if it is that strain resistant to zithro then the Biaxin didn't do any good. He could have had this all that time. He suffers from depression, but no OCD at all. From now on, I am going to take my fam. in for cultures with any slight anything.

My son had his 3rd IVIG 5 1/2 weeks ago. We had our first mid May. We are not seeing results, but we just discovered his brother has strep pneumonia and probably has had it since Sept. or longer. This might be playing a part in lack of recovery. My son has also had PANDAS for a long, long time. Until Oct of last year it was untreated PANDAS with numerous exacerbations. I'm still at a wait and see stage on the IVIG. Worried Dad's son had 3 IVIG's. His son didn't get better until the high dose Augmentin, but I think he wrote too that he wasn't sure if the IVIG's set the stage for recovery. I don't know if I'm going to do another one yet. I feel that they might work, but they take a long, long, long time.

My older son (non PANDAS) has strep pneumonia and has for who knows how long. Does anyone have any experience with this? The sent his throat culture over to the hospital to do sensitivity testing to find out the best antibiotic to use. Not sure what to think.

Hi Buster. Thanks so much for your help and information on this forum, you have been so much help to all of us. I'm sorry if I maybe misquoted you or misinterpreted your work. I was looking at your post from August 24, 2008 on "A little bit about ASO titers." On page 2 under What does this mean summary, "a rising ASO titer (regardless of absolute value) is an indication of GABHS strep; however, you need a baseline to be sure it is rising." I found too (thanks to your help) a medline abstract, "The human immune response to streptococcal extracellular antigens; clinical, diagnostic and potential pathogenetic implications." it stated , "the analyses clearly document in some instances for the first time, that an increase in antibody titer more accurately defines infections than does an absolute titer (eg. "upper limit of normal"), that antibody titers can remain elevated for man months even without GAS, and that some individuals may harbor GAS continuously for months or years without symptoms of infections and without an associated immune response." This was by Dr. Kurlan and Leckman and Kaplan too. My older son has strep pneumonia so I'm not sure how, or if it is playing a part in my PANDAS son recovery. I am assuming it is because Dr. K and Dr. B have family members titers checked. Dr. B. said any "exposure" to PANDAS kid to anything is like putting wood on a fire that you are trying to put out for these kids.

My older (nonPANDAS) son had his titers checked in late Sept. They were elevated. He also had a persistent cough for 3 weeks so I was able to purswade pedi to give abx. I had his titers checked again last Tuesday and asked for the results on Friday when I took my incapacitated with PANDAS son in to discuss his weight loss. My non PANDAS son's titers went from 244 in Sept. to 291 Friday. Pedi gave me the well they really are not that elevated, blah, blah, blah. I told him elevated was elevated and they are rising. I insisted my older son come in for a throat culture. Pedi wanted to put it off until sometime next week, I reminded pedi just how sick my PANDAS son has been, reminded him he has no life, pleaded with him to culture my older son. I told him I could have him there in 15 min. so he did see fit him in. Well, I just listened to a message from Sat from Pedi's office. My non PANDAS son has some type of strep growing and they have to have the culture sent over to the Hospital to determine the best antibiotic to put him on. No wonder my PANDAS son isn't getting better. Strep is right here in the house. I'm SOOOO tired of fighting for every thing. I'm tired of being looked at by pedi like I'm a 2 headed crazy lady. Buster printed a while ago some facts from Dr. Kurlan and Dr. ?? stating rising titers are a sign of infection. Before we left Pedi's off Friday, he tried to tell me again that PANDAS is still controversial . He is the one who told me about PANDAS 6 years ago with the sudden, drastic change in my son. He is the one who told me that although my DS didn't exhibit any strep symptoms at that time, he was going to culture him anyway and sure enough my son had strept and elevated titers then. He has been our Pedi for 19 years, time to find a new one.

Fr88 thanks so much for this info. It is really helpful. We had sudden onset 6 years ago, Chorea type movements and severe OCD within a 24-48 hour period. + culture and elevated titers. PANDAS was suspected but we got off track when we were referred to a psychiatrist. From there it was treated as OCD. As of last October. we are back on the right track. Did you ever have plasmaphoresis after having IVIG? We have had 3 IVIG's and I'm looking into PEX as our last possible treatment. My son is still crippled by this. Thank you for any advice on this.

I know a couple people have experience with this. My older son's titers went from 244 in September to 291 this week. Dr. doesn't know what to do. I'm going to try have Dr. B's office call Monday to give some advice. What have others done. He did have a 10 day course of Biaxin in September. Thanks for any advice. Is this why my PANDAS son is still struggling so?