What tests would be the most concrete?

[ajcire]

I agree it could just be denial... I can't tell if he just truly doesn't think anything is wrong or if he just doesn't want something to be wrong. That is a good question about if she writes a script for it. If not though I do wonder if the dr I saw for pandas would be willing to do it except that when he ordered bloodwork for my ds I know he sent me to a lab for it and did not do it in the office so I don't know if that means he won't for this.

 

I'm sorry, but he may just be in denial. Yes, all kids have "quirks" but when you add up all of them and then see connections, well....it's no longer a matter of just being a child. Does Dr Cunningham write out a script for the draw? If she does, then you could go to any lab (for example Lab Corp).

 

 

 

Vickie, yes... socially my ds sometimes stands out and sometimes doesn't. His teachers have said that he is not the odd kid out and it's just that he is at a different maturity level (they say he is more mature but in some ways it almost seems immature to me...although I know what they mean.. he really does well with adults... they say often they see this in bright kids... I mean, I am a special ed teacher although now I stay home with my kids and my class was made up of autism so I of course at one point was concerned about aspergers but have am no longer at all concerned about that despite certain quirks of his)

 

I don't know why he is so head set against this idea other than that I do know often it's harder for men to accept that things aren't fine (not always, I know that ) The only other thing I think is causing some problems with him getting it is things like how you said your non pandas child is saving garbage... well, when I first mentioned the concern of him saving garbage a few people told me their kids did that (kids with no other issues) and the sleep thing... well, we were at a friends barbeque the other day where 2 other parents of kids his age mentioned they were having trouble getting their kids to not come into their beds... so he says lots of kids have sleep issues or things like that... He's right but in my heart.. I know this is different.

 

quote name='Vickie' date='Sep 20 2009, 09:27 AM' post='38601']

Quirky is the exact same word I use. My son doesn't have any fine motor problems at all. It's actually a little funny you mention hoarding garbage and tags. My older NON-PANDAS son does that. Now that I know more about OCD, I am nipping that in bud now. I see so many things in a different light than I did a year ago.

 

Also, even when my son was in the middle of PANDAS episodes, he behaved well at school. Not very social, but behaved well.

 

Everyone's stories end up melting together for me. Can you once again explain why your husband does not think your son has PANDAS or will not entertain the idea?

[thereishope]

It's your child and you're taking care of them just as you should. Never think it's silly.

 

 

I do feel almost silly about this stuff when I see how extreme and difficult it is for some children.

[thereishope]

I believe I read that someone else went to Lab Corp, showed them the paperwork that came w/ the kit, and they ran the blood draw from that.

 

I agree it could just be denial... I can't tell if he just truly doesn't think anything is wrong or if he just doesn't want something to be wrong. That is a good question about if she writes a script for it. If not though I do wonder if the dr I saw for pandas would be willing to do it except that when he ordered bloodwork for my ds I know he sent me to a lab for it and did not do it in the office so I don't know if that means he won't for this.

[Megs_Mom]

Have you read some books about OCD? I like Aureen Wagner's book. It gives really good perspective on the variety of syptoms that are actually OCD. Depending on the situation, the following things can definitely be OCD: "I notice he starts paying extra attention to details of things that just don't matter, talks about things from a long time ago that are just not relevant anymore, things like that... and lately while he is going to sleep ok and just asks us to check on him, he suddenly won't go upstairs by himself anymore once early evening hits." So some children have a concern about safety - they may be concerned about robber in the house (my daughter did this). The ritual becomes insisting on having a safe person with you. The problem with this, is that when PANDAS comes back, it adds onto all the leftover OCD rituals, and it builds up much faster. And OCD can be mental too - which can often add fire to moodiness, although you don't see why. My dd had lots of mental rituals, and if you interrupted them, she would flip - totally irrational to me, but there was a real reason to her. If you want to PM me, we could talk a little about specifics if you want. But if it is not bad, and you are not worried, then you can just see what happens. I tend to be rather intense about OCD, Meg's got so severe, so fast this last time!

 

Currently he isn't really showing ocd stuff... it's more his mood, constant negativeness, when in this mode everything becomes the opposite, he becomes irrational at times to the point of ridiculous and then it's over as it if he was fine and nothing ever happened. I notice he starts paying extra attention to details of things that just don't matter, talks about things from a long time ago that are just not relevant anymore, things like that... and lately while he is going to sleep ok and just asks us to check on him, he suddenly won't go upstairs by himself anymore once early evening hits. And he is doing some throat clearing.

 

I do feel almost silly about this stuff when I see how extreme and difficult it is for some children.

[EAMom]

We've gotton ours drawn at the lab within our medical group. We didn't need a dr.'s orders since it is part of a University Medical Study. Just show them the forms that Dr. Cuningham sends with the package. You could call in advance to confirm this is true with your lab.

 

When you get the Cunningham box don't forget to take out the ice packs they provide and stick them in your freezer. After the blood is drawn and spun down, the lab will separate the serum and put it into the plastic tubes. Then you (or maybe the lab will do it for you) will pack up the ice packs/serum in the box and ship it. When we got blood drawn at Stanford, they wanted to ship it themselves. When we did it through our medical group, they gave us the box and we drove to fed ex and mailed it. BTW don't say too much at fedex...don't mention that it is serum (or blood) or anything, just in case!

[ajcire]

Oh goodness. Are you not supposed to mail that? Do they ask if it's anything liquid fragile or hazardous like the post office always asks me when I mail things?

 

 

We've gotton ours drawn at the lab within our medical group. We didn't need a dr.'s orders since it is part of a University Medical Study. Just show them the forms that Dr. Cuningham sends with the package. You could call in advance to confirm this is true with your lab.

 

When you get the Cunningham box don't forget to take out the ice packs they provide and stick them in your freezer. After the blood is drawn and spun down, the lab will separate the serum and put it into the plastic tubes. Then you (or maybe the lab will do it for you) will pack up the ice packs/serum in the box and ship it. When we got blood drawn at Stanford, they wanted to ship it themselves. When we did it through our medical group, they gave us the box and we drove to fed ex and mailed it. BTW don't say too much at fedex...don't mention that it is serum (or blood) or anything, just in case!

[EAMom]

I'm not really sure. Dr. C's lab thought they did it right (package/fed ex rules), Stanford wasn't sure. So, I thinks it's better just to keep mum. In any case, I don't consider my dd's serum to "hazardous" material. Plus, the serum is in plastic vials, which aren't breakable like glass is.