Our Cam Kinase Score results...

[P_Mom]

EA Mom....we all knew (well, the majority of us) what you meant....as what I meant, too. Faith, who started this post, was the first to mention "the club." So, she is obviously not offended by the remarks. Everyone here is ticked off at the medical community.......we are all in the same boat...or "club"...whatever you want to call it.

 

There is no need to worry about us PANDAS parents thinking this is a "joke".......it is obviously NOT and I do not think one parent on here has ever suggested it is.

 

Some of us are able to keep our spirits up, which I think is a great thing and beneficial to ourselves, children, and family as a whole......that is what I admire about Faith. It makes me smile to read some of her silly posts, and I get what she means (even the tea and toast remark with the flu:) )............ the humor is something that makes my day a little more brighter. However, I have NO DOUBT she , and the rest of us, takes this EXTREMELY seriously and would do anything for our children.

[sf_mom]

Just so you know, I wasn't upset with any one comment by any one individual.

 

I'm exhausted from the 4 months it took us to get my son the proper help, we have spent thousands, I am practically unable to get work done, I go sleep and wake up thinking PANDAs and now I have major concerns for my 2 1/2 year old. My son could have easily been Faith's son. We were originally referred to Dr. Lowe UCSF 'world renowned' Tourette's specialist. You know what he told me on the phone... if your child has problems in the future above and beyond Tourette's we have one of the best Mental Health Divisions at UCSF in the country What!!! You mean my son will get sicker!!! Then the immunologist in SF who misdiagnosed my son's friend in 2007 told me NO CONFIRMED PANDAS for MY SON because his anti-DNAse-B were negative and to keep my appointment with Dr. Lowe. They've now turned away another child for treatment at CPMC in SF.

 

I swear, if we don't get mad, we won't get the medical community to pay attention. We've got very sick kids who have had their immune system/brain/joints/heart continually attacked and there are millions more. Unfortunately, its the marathon that I wasn't up for but now feel compelled to finish the race by helping others.

 

I want to scream to everyone..... DEVELOP A LOGICAL TREATMENT PLAN 'DO NOT WAVIER, DO NOT STOP, DO NOT ACCEPT ANYTHING LESS THAN 100%' for your child. THE DOCTORS ARE JUST NOT GOING TO DO IT RIGHT NOW!!!! YOU are your child's only advocate.

 

Can I cry now!

 

-Wendy

 

 

 

Yes...I meant "congratulations" in a "ha ha those doubting docs were wrong and you were right" kind of way...and "now that you finally know what is going on with your child we can finally start to take some concrete action to address the problem correctly"...which are both good things.

[sf_mom]

I enjoy the humor too....... Its just me, I'm the angry one today. I apologize if it seemed as if I was upset at any one comment. Its not the case. I just had to go to the Dr. with my younger son this morning to run battery of tests to confirm RF/PANDAS or not and I think the possibility of my other son being sick too is throwing me over the edge.

[faith]

((Wendy)),

I totally hear you. I knew exactly what you were trying to say. please try to stop worrying about your little one, I'm sure he's fine. Is he examined on any regular follow up basis from when he had the IVIG? What things are you seeing that is concerning you? remember, you are probably on high alert because you know what the signs could be, but he's so young, you're not gonna get an accurate read. your not seeing anything ticcy, are you? Sometimes even the difficult behavior can be kind of, well, both frustrating and funny as heck at the same time,... I mean, I say you havn't lived until your kid has a tantrum in the middle of the produce aisle! Its all good, I believe there is help on the way. I do.

 

Come on honey, let's go get a cup of something at the tiki bar, lol........ ...

 

hugs

Faith

[sf_mom]

Faith,

 

OK, OK.... you made me laugh. As for our 2 1/2 year old, its hard to say but knowing what I know I can't just chalk it up to being two anymore. Thankfully, our Dr. and my husband agree so we tested: ESR, CRP, ASO, ANTI-DNAse-B, STREP PNEUMOCOCCAL ANTIBODY TITERs and forwarded blood samples to Madeleine Cunningham.

 

I'll take the hug.

[smartyjones]

Where's the tiki bar?.............

 

Can you give me please give me directions to that bar?!

 

Faith - was your son in an exacerbation when you did the cunningham test?

 

but am disappointed in myself for not finding out more about it.

 

Please Faith - give yourself a break - you are doing a great job of taking care of your son! We all do the best we can with what we have going on at the time. At times recently, I've thought of a talk I heard at my church a few years ago from this fabulous reverend. She was giving a metaphysical explanation of Noah's Ark and said it only had one window on the whole ark on the top - for looking up only - none for looking around, none for looking ahead, none for looking back - just for the here and now looking up. Trust that you're going in the right direction. With what you've listed you've done in the past years, you are definitely doing a far better than average job looking out for your son!

 

Kathy

[Megs_Mom]

I love this forum. Here we all are, having some of the worst times of our lives, worried to death about our own children - and yet you are all so generous with your time & energy & information. And in the midst of all this crisis, you can be honest and understanding. I love it, and am proud to me a member of this amazing group of parents. I hate that we are in this "club", but we are. I hope we can all work together to change not just our children's lives, but the lives of so many more families. Thanks for continuing to inspire.