Iowadawn

Cobbie- How many years after dx did it take to see improvement? Keep encouraging. Your journey HAS helped others. Iowadawn

Namenda was just added back into the mix for ds12. It helps with the inflexibility/rigid/stuck thinking. VERY common drug now in the autism community. At least in central Iowa. Dawn

Will PM you. It has been a rough road. The addition of Namenda on Tues seems to be helping with rigidity/autistic traits/over the top behavior. The LLMD's comment to me re "How he is doing": "You are not going to like when I say I really don't know, but...I really don't know. We have seen glimmers only to lose them. Yes, IV abx is something I would like to try, but am afraid he will yank out the line." We are hoping we have a bit more leverage with the court-ordered CINA if we want to see him in-patient in order to do more aggressive txs. We go Wed for pre-trial. I wish we didn't have the state involved, believe me. Now that we do we will do EVERYTHING in our power to use this situation to help Evan. I will PM you. Thank you for praying. Dawn

Hawks- I have been so engrossed in our situation that I missed the Lyme dx on your end!! are you seeing the doc in Iowa?

I am beginning to think that our son is not well enough from the TBI tx to be benefiting from the IVIG's he has had. B4 with just PANDAS tx the IVIG gave us some relief b4 relapse. We are not seeing the relief from them now. I think I read some doc stating IVIG as a later tx in lyme. We are going Hmmmmmmm with ds12 and the use of hd or ld IVIG. My contribution to your confusion!! Dawn

The worst I have heard is that you get a reprieve---symptoms definitely get better, but a return say, after a year or so. On the other hand, I have heard good, lasting results. All anecdotal. We are off to an ENT for our 16(near 17)yo daughter that had adolescent variant of PANDAS dx'd 1 1/2 years ago. She has had titers so high when we started to unravel what was going on with her. 7500 AntiDNase!! Anyway, she had been on a boatload of abx over time. She came home from a conference this last weekend--getting sick. Long story short-I fell over when I looked in her throat. The nastiest strep throat I have seen, and the only bonafide one she has had that I recall!!! We requested an ENT. SHe may be why we are having trouble with our PANDAS/Lyme son. She is doing much better overall on the Cefedil. I am guessing her tonsils and adenoids, & sinuses are a hang-out for the strep. Those who have followed our case have been aware of our family's ridiculous titers that left doctors going Huh?? & Mayo recalibrating their equipment because our results were so high. DD16 has seemed to be the holdout getting the titer levels down. I'll keep you posted on what happens. Appt the 29th. Dawn

Yes, new & /or increased achiness came/comes with the lyme treatment, for our son. Dawn

We see Dr. P. Dr. P seems to shoot right up the middle for treatment protocols (ILADS) and alternative meds, but the one frustrating thing about him is he is pretty hands off in checking you out. No ART. He has been a good advocate for us. He has had great feedback from ILADS and Iowa chapter. His results have been good. He is the only one near us. We have heard of the guy in Denver. Dawn

I have not had good vibes PANDAS from Mayo--unless it is changing. Isn't this Kurlan Kountry?? Dawn

HHV6 positive for at least myself and one daughter. (Not everyone has had this run.) Dawn

Our son had vision therapy 2x's a week & 5 days at homework three years ago. He had a lot of eye tics at the time & other movement stuff going on, too. The eye muscles really get a workout--do some of the exercises and you will understand. The extra blinking, or squinting, or other stuff may be in an effort to relieve some discomfort.(?) Lot of tics, but they were in full force b4 the therapy. Dawn

Yup!!

Jen- I am glad you found the forum! About where do you live? I'll start with that. Dawn

Our son was "just" positive on the bartonella titer. We never noticed rashes of any sort until we started going after it---his back became covered with the bartonella rashes. His behaviors/sx's plummetted right along with them!! Dawn

Ditto on those two books. Dawn

Seroquel was one very short-lived one for Evan. Did nothing. Or made things worse. Most drugs have. His psychiatrist said that psychiatric problems due to infectious etiologies are very difficult to find drugs that bring relief of symptoms while treating the real problem. I will say the less "exotic" the drug, the better the relief. Evan is on gabapentin & clonidine right now. Dawn

Where is the dancing banana?, or whatever the thing someone posted that was dancing around, when we need it for Wilma & her girl!!! Dawn

I do hope this higher steroid increases your windows of "normalcy". I also still hope you are working on finding a PANDAS psychiatrist. It really takes a team of experts to help our kids - especially the older kids who have been dealing with this for a long time. Unfortunately, we have to draft the team from around the country and coach the team so they all know what each other is doing!! Kimballot- Ain't that the truth about the "drafting" & "coaching"!! Perfect analogy!--NOBODY will look out for your child as well as you will. Dawn

Whew-Hoo!!!!!!!!!!!!!! Awesome. Different is good, and when it is a good different, it's GREAT!! Dawn

DITTO, Wilma.

When you have a child that is as ill and as difficult to treat as your daughter (Our son has been incredibly difficult--He has runout in the street egging on a school bus to run him over) finding a good child psychiatrist who gets PANDAS or symptoms with infectious etiologies I believe is the one thing that has saved us and our son. It is crucial the doc is willing to communicate with the doctor that is treating the infectious aspect of your daughter's condition. Knowing we have a place to hospitalize our son during crisis or to be stabalized is comforting if it becomes necessary. I would wager that the younger psychiatrists are aware of these conditions. I think they are also more willing to think outside the box. It may just mean you pick up the phone and start calling and asking what the doc's comfort level is with PANDAS dx. It has NOT been perfect for us--but we are convinced with what we have endured our son would not be in our care without the care & backing & the availabilty of inpatient care. Now that we are in the thick of lyme treatment and the wild ride this has taken us on, it has become even more crucial. I know others will weigh in differently. This has been our experience. I honestly wish we would have thrown in the towel sooner & sought ought psychiatrist, as he was the one that connected the dots for my son and found the infectious component to his problems. He just said the other day that he has treated 1000's of kids and our ds12 is one of the top 3 or so diffiicult & complex cases he has had. I don't know if this helps. PM me if you would like. (((Hugs, 'cuz I get it))) Dawn

Oh, Wilma, can I ever empathize with you. Again, change-ups where you are at are a positive sign that you are on the right track. Dawn

Different is "good". Hang in there. You are a tough cookie!!! (((HUGS))) Dawn

I'm glad your visit was a sucess! Keep us updated on how things go. We had a thread on "what ethnicity are you" a while back. Mostly white if I remember. However, I suspect that Dr. Schulman's observation reflects her patient population in general. Maybe someone will be able to find the thread? I do suspect there is a genetic component...but with regards to enthicity I think it is really hard to say just b/c so many PANDAS kids are undiagnosed. I know Dr. K. has a phenotype as well (intelligent mom, etc)...and I don't personally believe this actually represents the true population of PANDAS kids...just the type of folks that are determined and educated, the type of parent who questions docs, does there own research on the internet, and has the resources to travel hundreds or thousands of miles for appropriate treatment with Dr. K. Here's an article about strep/ocd in polynesians http://archpedi.ama-assn.org/cgi/content/full/157/7/665 I'm convinced that the if you have PANDAS and have parents that are either poor, uneducated, or don't know to question the medical community...you will likely end up misdiagnosed (bipolar, ocd, tourettes, odd, adhd, --unless they are very lucky with a clearcut case of PANDAS and an astute doc) and inappropriately treated, more likely to wind up in a mental institution, in jail, on illegal drugs,or a bunch of psych. meds, than receiving Azith. and IVIG. If you are a kid in the foster care system (or medicaid) with behavior issues, nobody is going to delve into "why"...you will simply be put on a battery of psych. drugs no questions asked. http://tmap.wordpress.com/2008/08/31/anti-psychotic-drugs-for-kids-get-state-look/ Are you familiar with this case? http://www.mlive.com/news/detroit/index.ssf/2011/04/post_55.html Maryanne Goboldo was arrested for refusing to treat her daughter with Psych. drugs. Her daughter developed severe behavioral problems after receiving immunizations. (I suspect her dd has undiagnosed PANDAS, but we'll never know unless we can get the mom on this forum.) BIG Dittos, EAMom