Re: Re: Lab results - Vicki

[Guest guest]

Hi Gayle Once on the penvk for an extended amount of time, I think Jakes titers started to really come down and he just started feeling well again. He started reading words and focusing so much better in school. But whenever Jakecomes into contact with viruses or strep his focus goes, hyperactivity starts and then ocd behavior an aggressiveness begins. I know always respond quickly with antibiotics. It helps but I have never seen the huge difference the way I saw the first time with pen vk.gowens_lmt wrote:

Vicki,You mentioned that Jake's focus improved on prophylactic PenVK. As my son's ocd and anxiety abated after 1.5 years he was left with profound focus and attention issues that weren't part of his life prior. I've never heard another PANDAS/PITAND parent describe this. The NIH literature doesn't address it either. I thought it was just Gatlin. He had mild focus/attention issues before PANDAS but nothing like after. Has that been your experience, also?Many thanks,Gayle> > JMO, if the symptoms are there and the strep titers are high then it's probably > PANDAS. It's been really hard

around here too. If you look at the list of symptoms for > PANDAS my son has them and on a scale of > > 1-10, he's a 12. We lost him 1st to autism, and we just lost him a 2nd time to > PANDAS. The PANDAS has been worse than the autism ever was.> > > > It just seems like every time a kid has high titers for ASO or DNase people think its > automatically PANDAS. OCD can be part of autism and can be triggered by viruses or > bacteria, including strep> > > > I am not talking about anyone specific, and I don't mean to belittle anything anyone > else is going through, but its hard to read when people say "my kid had high strep titers > and was a little OCD this week, its PANDAS" when I don't think the majority know the hell > of a true nightmare of a case of PANDAS.> > > > We ran the PANDAS profiles. My son's numbers on everything

(strep and antibrain > antibodies) are all atleast 200% elevated and as high as 400% elevated. The strep > antibodies have gone awry and instead of trying to fight off the strep they are attacking > my kid's brain.> > > > I just don't want everyone to think that just because their kid had strep throat or has > has elevated titers that its automatically PANDAS> > > > The PEN VK is not going to lower his titers. Penicillin can't do that, but what its there to > do is kill of any remaining strep in the body so that the body will stop responding to it, > and its also there as a prophylactic to prevent another infection.> > > > We were doing Bicillin injections and not only did my son's symptoms get worse but his > numbers went up. We just switched to Zithromax about 2 weeks ago and for the first time > in 8 months we see little

blips of the way my son used to be showing through. A little eye > contact, he's happier, the vocal tics/screams are starting to decrease. Unfortunately the > OCD and ants in the pants thing is at a record high, and he still fights, protests and > screams bloody murder when the slightest demand is place on him.> > > > 8 months ago we had a child who was awarded "Most Improved in All Areas" after his > kindergarten year and in September was starting to integrate in a typical class for part of > the day. By mid October that child was gone and now we have the problem/behavior child > who screams, refuses to do work, spaces completely out, spits, pulls hair, hits, is very > impulsive, and needs 2 people to walk with him in the hallway to control him.> > > > I'd kill to have back my son the way he was before his illness in August, even if he >

never improved anymore beyond where he was at that point. This has been far worse than > autism ever was> > > > Kerrie> > > > In a message dated 4/10/2008 9:43:09 P.M. Eastern Daylight Time, theshannster2@ > writes:> > Hi Kerrie. We are treating PANDAS with PEN VK based on new behaviors that occured > after > > a strep infection (throat +) and then pos/high for the ASO and the DNASE. These NEW > > behaviors have still not subsided. Here, I was under the impression we had PANDAS as > per > > the Doctor, who told us we did. Is this profile the only way to tell, and am I possibly > giving > > un-necessary antbiotics? Now I am confused.....I will def. ask about the tests you are > > speaking about, too. Things have been really tough around here lately.--- In > > > > > > >

> > > > > > > > > ---------------------------------> > Planning your summer road trip? Check out AOL Travel Guides.> > > > > > > > > > __________________________________________________> >