What tests would be the most concrete?

[ajcire]

I am struggling here again with the battle of my dh not quite getting this whole thing. What tests would be the most concrete evidence if my ds is currently having some symptoms (symptoms that are just not clear cut to being this or him just being a kid... but as his mom... I know). Last time I had bloodwork done was last november and while I don't have the results my dr. at the time said that the strep things all came back within normal range... but he felt that based on symptoms and the timing of it all (there was strep in the house) that the bloodwork didn't prove it wasn't this... he had put him on 3 months of antibiotics. I noticed a difference as well as my parents who spend a lot of time with him. My dh... he won't admit it but at the time, he noticed it too. I want him back on antibiotics now. Dh needs something concrete to convince him. I so wish there was a test like a pregnancy test... positive or negative and no guess work. It's mild in ds but enough that it is making me crazy and likely he isn't feeling so good about it either even though he isn't expressing it. It's not affecting school.

 

I know I need to go get him a rapid strep test and culture to rule out that he has it at the moment.

 

School just started 2 weeks ago. This was the same time we had problems last year. I do not believe it has anything to do with school other than what he is being exposed to. His teachers indicate no problems at all. Besides for behaviorial at home, he has started throat clearing as well... but not at school.

[thereishope]

Has he ever visited this forum? If you emailed him a link and asked him to view it, would he? However, you may have to go through and edit some of your own posts if they show him in a negative way (don't know if any do). Don't want to cause more drama than what it is already there.

[dcmom]

Unfortunately there is no concrete test...

 

ASO and ANA titers really do not mean much regarding pandas- they are to indicate if there has been a strep connection.

 

The best test out there is Dr Cunningham's test. Have you considered that. That test, along with the clinical picture can help you confirm your diagnosis. Have you seen a doctor helpful with pandas? I have to say- that really helped my dh understand...

[ajcire]

It is a good idea but unfortunately I don't think he is doubting that this exists but is doubting it is what is our ds's issue. It's because with our ds if you take the behaviors and concerns I have and isolate them, they can be seen as typical... but when I piece everything together I see the big picture. He thinks I am looking too much into it but to me it all seems so clear. My ds is 7 now. I can go back to when he was 2 and we brought him to the dr. for eye blinking... told it was common childhood tic.... same at age 4 when he was clearing his throat... that year was also the first year I had strep, dd had strep and ds had strep... it was also when he started hoarding garbage (wouldn't let us throw out wrappers, we found clothes tags hidden in his room)... seemed almost comical at the time.. and seemed to just pass on it's own in time. Handwashing.. went through handwashing that didn't affect his life but was noticeable to me that he was doing it way more often and adament about the need to if he washed before eating but then touched something before he actually ate he was off to wash again. That too seemed to go away. Then last year my dd had strep. 2 days before we knew it was strep my ds started to freak out at bedtime that we had to check on him. He wouldn't sleep without me sitting next to his bed. It was totally out of the blue. I then realized that he was constantly needing the bathroom too. Throat clearing picked up again. He was also having rages. He was just plain cruel to his sister and to me. He would be set off by anything and then it would just be over as if it never happened. I started researching at this point because the sleep issue was so causing major stress in our house. That was when I came across pandas and had a major AHA moment. It described my son. He is extremely bright, very good at math, looks for patterns in things, thrives on routine, perfectionist.. the only thing is he does have very good fine motor skills that were never an issue.. I see it is for many children. I always just described him as quirky.

 

I know I am rambling.. just no longer knowing what to do with what seems so clear to me. I am going to talk to the dr. about getting him on antibiotics regardless of dh's thoughts but it would be so helpful if I could find a way to get him on board.

 

 

Has he ever visited this forum? If you emailed him a link and asked him to view it, would he? However, you may have to go through and edit some of your own posts if they show him in a negative way (don't know if any do). Don't want to cause more drama than what it is already there.

[ajcire]

I am trying to figure out what cunningham's test is, what it will tell me and how I get it done... and of course how much it will cost.

 

I know this sounds terrible but dh refused to go with me last year the one time I saw the dr. who does indeed believe in pandas and put him on the antibiotics. Unfortunately he was with me when my regular pediatrician (not anymore for ds) told me I was crazy and that it didn't exist. He was not with me when the other dr. in the practice told me I was not crazy but it was just out of his realm and referred me over to this dr. I saw. I know how it sounds... but it's not like that... for some reason this is just not clicking for him.

 

 

 

 

Unfortunately there is no concrete test...

 

ASO and ANA titers really do not mean much regarding pandas- they are to indicate if there has been a strep connection.

 

The best test out there is Dr Cunningham's test. Have you considered that. That test, along with the clinical picture can help you confirm your diagnosis. Have you seen a doctor helpful with pandas? I have to say- that really helped my dh understand...

[monarchcat]

I would also definitely recommend Dr. Cunningham's test. I was so conflicted as to whether I truly believed my son had PANDAS because he wasn't typical in a lot of regards, and he wasn't nearly as severe as many cases I had read about. In fact, my pediatrician offered a month of antibiotics as a trial last June and I said no... I just wasn't ready to put him on ANYTHING until I was more sure. Later in the summer I did the Cunningham test and that pretty much clicked the last piece of the puzzle into place.

 

If the cost of the test is an issue, ask them when you contact them if you can pay less, or nothing if necessary. They ask for $200 to offset the costs involved, but it's not mandatory. If you can pay the $200 it's WELL worth it, but if it's prohibitive, then it shouldn't stop you from doing the test.

[thereishope]

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?

[dcmom]

Dr Cunningham's test looks for anti neuronal antibodies. It can help to determine if your child is in the ocd/tourrettes range, the pandas range, or sydenham's chorea. It is probably best to be done during a flare up. It is a research tool- not a concrete answer.

 

They ask for $200 to cover their costs- but you can pay less or nothing, I think.

 

You have to email them for a test kit, which they send out very quickly. You then need to find a lab or doctor to draw the blood, then spin it in a centrifuge. Then you overnight it to them on ice. It takes a couple of weeks to get the results.

 

It sounds like a big deal- but it is not. As a parent, it is very helpful to see some results written in b&W.

[ajcire]

This might sound like a really dumb question but how do I overnight it to them on ice? Do you know if it's hard to find a lab that will do the blood draw or not?

 

 

 

 

Dr Cunningham's test looks for anti neuronal antibodies. It can help to determine if your child is in the ocd/tourrettes range, the pandas range, or sydenham's chorea. It is probably best to be done during a flare up. It is a research tool- not a concrete answer.

 

They ask for $200 to cover their costs- but you can pay less or nothing, I think.

 

You have to email them for a test kit, which they send out very quickly. You then need to find a lab or doctor to draw the blood, then spin it in a centrifuge. Then you overnight it to them on ice. It takes a couple of weeks to get the results.

 

It sounds like a big deal- but it is not. As a parent, it is very helpful to see some results written in b&W.

[ajcire]

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?

[dcmom]

They will send you a box to send everything back in, along with an icepack, and directions. They are soooo nice and helpful.

 

I couldn't really find a lab (but I know some others have), but am lucky enough to be 15 minutes from Dr Latimer, so she has done it for me...

[ajcire]

Thank you! I am going to ask the dr. I saw regarding this last year if he is familiar with this test at all. Do you know if there is a good link to information that I could share with him if he is not familiar with this?

 

 

 

They will send you a box to send everything back in, along with an icepack, and directions. They are soooo nice and helpful.

 

I couldn't really find a lab (but I know some others have), but am lucky enough to be 15 minutes from Dr Latimer, so she has done it for me...

[thereishope]

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?

[Megs_Mom]

I was exactly the same way! I was so concerned about what to do, despite my strong suspicions, due to the way doctors treated us. But then when Prednisone worked a miracle for a week, her Neurologist saw hand tremors, and the Cunningham test was postitive - I finally had enough to start bucking conventional medicine, and start working with specific doctors that make this their life's work. I also thought that while the OCD was awful and debilitating - that her story was not as bad as so many, and just questioned if she was severe enough to fit PANDAS, especially without tics. I now get that you can have both or one or the other. And I wonder how many more "mild" cases are missed.

 

Erica240 - if you can, do the Cunningham test - you can call a local LabCorp office to get the draw done, and the ice packs come with the box. It changed my husbands mind as well. My only other advice would be that if you can, find an expert in OCD and ERP therapy. While you are getting things together, doing this therapy can really help a child deal with things. We could not get rid of all OCD with antibiotics, and she is not currently bad enough for IVIG.

 

I would also definitely recommend Dr. Cunningham's test. I was so conflicted as to whether I truly believed my son had PANDAS because he wasn't typical in a lot of regards, and he wasn't nearly as severe as many cases I had read about. In fact, my pediatrician offered a month of antibiotics as a trial last June and I said no... I just wasn't ready to put him on ANYTHING until I was more sure. Later in the summer I did the Cunningham test and that pretty much clicked the last piece of the puzzle into place.

 

If the cost of the test is an issue, ask them when you contact them if you can pay less, or nothing if necessary. They ask for $200 to offset the costs involved, but it's not mandatory. If you can pay the $200 it's WELL worth it, but if it's prohibitive, then it shouldn't stop you from doing the test.

[ajcire]

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.

 

 

 

I was exactly the same way! I was so concerned about what to do, despite my strong suspicions, due to the way doctors treated us. But then when Prednisone worked a miracle for a week, her Neurologist saw hand tremors, and the Cunningham test was postitive - I finally had enough to start bucking conventional medicine, and start working with specific doctors that make this their life's work. I also thought that while the OCD was awful and debilitating - that her story was not as bad as so many, and just questioned if she was severe enough to fit PANDAS, especially without tics. I now get that you can have both or one or the other. And I wonder how many more "mild" cases are missed.

 

Erica240 - if you can, do the Cunningham test - you can call a local LabCorp office to get the draw done, and the ice packs come with the box. It changed my husbands mind as well. My only other advice would be that if you can, find an expert in OCD and ERP therapy. While you are getting things together, doing this therapy can really help a child deal with things. We could not get rid of all OCD with antibiotics, and she is not currently bad enough for IVIG.

 

I would also definitely recommend Dr. Cunningham's test. I was so conflicted as to whether I truly believed my son had PANDAS because he wasn't typical in a lot of regards, and he wasn't nearly as severe as many cases I had read about. In fact, my pediatrician offered a month of antibiotics as a trial last June and I said no... I just wasn't ready to put him on ANYTHING until I was more sure. Later in the summer I did the Cunningham test and that pretty much clicked the last piece of the puzzle into place.

 

If the cost of the test is an issue, ask them when you contact them if you can pay less, or nothing if necessary. They ask for $200 to offset the costs involved, but it's not mandatory. If you can pay the $200 it's WELL worth it, but if it's prohibitive, then it shouldn't stop you from doing the test.