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looks like i am leaving the club...


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If you rule out everything else, and he does indeed have OCD and bi-polar, take him to a Brain Balance Center. You're not out of options yet. I understand you're feeling overwhelmed, but never give up. The Brain Balance Center are another possibility and if he does have an imbalance in the brain, this program works!!!

 

Just saw dr latimer a few hours ago and she does not believe my son has PANDAS. I am feeling so overwhelmed and confused right now. Its not that I wanted to hear that he does have PANDAS, its that so much of what I've read from you all matches our

t experience with our son, being here on this forum is the first time I've felt like others really understood all we have gone through. And of course, I'm still wondering if somehow I did a horrible job describing it all. She sent us for bloodwork to rule out lyme, heavy metals etc., which is the first time anyone has done this for us. She also referred us to a neurologist in Michigan she knows for an MRI, petscan and 72 hour EEG. She suspects this may be some sort of seizure type problem. Or if not, then bi-polar disorder. Either way, the meds would be the same (lamictal, depakote etc). But if we rule all this out, then were left with OCD and bipolar, and that means a life time.... when I asked about the fact that his syptoms get worse with illness and get better with antibiotics, she said that seizures can be brought on by illness, and in turn mental illness can get worse with illness as well. She said kids with PANDAS dont seem to have good times - just bad and really bad...and of course the neuro exam was all fine. She said she didn't want to go down the PANDAS road with him thinking there may be something else going on. So I suppose we have a new direction to follow, albeit not one that I'm entirely comfortable with. Thank you all for all your support through this. I am keeping your children in my thoughts...

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AMEN! Especially with PANDAS because not enough real research has been done and the little that these great doctors do know re: what works and what doesn't is thru trial AND error! One of these great doctors who is so carefully trying to help our famly just wrote me the following response to a general queston surrounding IVIG..

 

"Your question is just the sort of question the Drs. are asking themselves.

From my perspective, we do need additional randomized controlled clinical trials to judge IVIG's benefits on a well characterized group of children with PANDAS.  That should help resolve some of the controversies surrounding this disorder."

 

As parents we have to make the final decision in what treatment we do with our children and are ultimatley responsible for those decisions. These are decisions we make after we educate and understand as much as we can and what is known at the point where we have to decided what the next step is in searching for resolve. I don't believe it's a hasty decision any Dr. or parent makes and it is also holds no guarentees. If we have success or failure many parents and Dr.'s will learn from that and it's the best that we have until more reasearch studies are done.

 

I am just so greatful that there are some doctors out there willing to help so many families who are the pioneers in this medical journey. I think I posted this earlier so my apologies for repeating myself...

 

We are ALL in “the same boat”, just in different parts or the journey, for some it may take longer to get there, there may be "detours" along the way, (unfortunately, some more than others), we might take different routes, it's for sure a "bumpy ride" with rough seas but our destination is all the same. Let’s not “rock the boat” but instead, unite and conquer!

 

I really believe as parents with the help of these doctors we will win our children back from this horrible disorder!

 

"You know why they call it PRACTICING medicine, don't you?! 'Cause they're practicing on US!"

I totally agree with you (and your dad)! An example would be how certain docs have changed their protocols within the past year...becoming more aggressive with antibiotic doses and type (more full-strength/high dose, more augmentin xr/azith). Nobody has all the final answers. It's the truly great doctors that will look back on what has and has not worked and be willing to change and adapt and grow.

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