Have any of you had your kids score within normal on the cunningham te

[ajcire]

I think part of what I am concerned about with the cunningham test is it coming back normal and me having no direction to go in. I mean, I would love for this to not be PANDAS but I actually would rather it be at this point because at least it's an answer. I know something is wrong, it screams PANDAS but what if the cam test comes back fine...

 

Anybody get results not indicating pandas and what did you do with that information?

[feedjke]

erica240 (my kindred spirit)

 

Let me see if I can hit this nail on the head. Although you dont want anything to be wrong with your child at least PANDAS would be a starting point, a place to start and move ahead. Something you can tell someone who inquires about your child, instead of "we have no idea whats wrong with him" Perhaps your like me (admittedly very Type A and probably some OCD tendacies when it comes to neatness, germs etc) I can't deal with what I can't understand. The constant not knowing, starring at my child for one more tic one more sign that makes more sense. Not knowing which direction of the hundreds to go in. Knowing that this is my responsibility to help my child (not to mention what if it becomes an issue for his younger siblings) what if I chose the wrong one? Anxiety Anxiety Anxiety. Anger at the doctors that look at you like your a loon or one of those moms who wants her kid to be sick for the attention. I deal with black or white, I dont do well in shades of gray. I am suffering, this is affecting my health, my function and our entire family. We all are struggling. I vote do the test. I think your already doing better than me as you know where to get this test. It can help in diagnosing PANDAS but I really dont think there is anything available to rule out PANDAS. So if in your heart of hearts you still believe it, pursue it regardless of the results

 

Sorry for the rant but I feel better now just got off the phone with a Dr. who wanted me to try Resperdal, although he wont rule out pandas he said we just treat the symptoms for now. Why dont I just put a bag over his head, then I wont see the tics problem solved right (why bother getting to the real problem).

[P_Mom]

I got a score of 112 for my older son....Kathy says it still indicates PANDAS....Dr. C indicated on the hard copy that it is considered normal. His score overlaps with normal and very low end PANDAS. He is still absolutely PANDAS....however, he is a mild case. Diagnosed by Dr. K and Latimer. Sudden onset tics/ADHD after strep....antibiotics immediately....improvement immediately.

 

Just last week he went from symptomless to doing some throat clearing "just one day out of the blue"...very noticeable.

I upped his antibiotic in the event it was strep (don't believe it was...he would have been much worse). Anyway, I have been waiting for the illness to strike....then, the night before last he ended up in our bed in the middle of the night. The next day I made a comment to my husband about him coming in our room at night. He was like..."yeah..so?" (Still not getting it after all the years! LOL) I said that is usually the biggest indicator he is getting ill....today he woke up with a very congested chest, cough...home from school. Very indicative of PANDAS.

 

Remember, this is a study test...can be a great indicator..but, go with the clinical picture and response to treatments!

 

 

(Both my children had normal scores on all the other tests)

[Megs_Mom]

I think part of what I am concerned about with the cunningham test is it coming back normal and me having no direction to go in. I mean, I would love for this to not be PANDAS but I actually would rather it be at this point because at least it's an answer. I know something is wrong, it screams PANDAS but what if the cam test comes back fine...

 

Anybody get results not indicating pandas and what did you do with that information?

We all go through this. It's nerve-wracking. So here is the deal - our neurologist felt that this test is one part of the picture. A positive is very indicative of a PANDAS issue. A negative means nothing. In the end, you need a clinical picture. Keep in mind for yourself, that you are the ONLY one that will know the results, unless you decide to share them. Very few doctors even know that this test is available.

[ajcire]

Thanks everyone for the encouragement to go through with this.

 

feedjke, yep you pretty much have me pegged only my home will show all signs that I am not ocd on neatness...

 

Megsmom, I was thinking the same thing about the results only I think I will be going to my ped for the blood draw IF he is willing to do it so I guess he will know I did it... I don't think the lab will do it for me. I printed out the stuff that Dr. Cunningham just sent me (She got back to me fast!) and planned to bring it to my dr. to show him what I would like to participate in and ask him to do the blood draw but maybe I should really search elsewhere and leave him out of it? I don't know if I can get it done without his cooperation.

 

P.Mom, Yes... my son presents like yours... really mild. In the past some very mild ocd that has not come back, fidgety -can't stop moving, and throat clearing as well as needing us to "check on him" at night. I also can just see it in my son's eyes.

 

 

 

If it's not always just strep causing it, than why do antibiotics take care of it?

 

And another question: If I should do the cunningham test during an exacberration (no idea how to spell that) but he is mild and I am not sure if this is a full one or not do you think I should just go for it and not wait anyway? I mean, he currently has an increase in the throat clearing that he always has during a positive strep culture (his last positive culture was mid september and he's been on amox since). He definitely is having some of the behavior things but mild. Enough is going on that I know the amox isn't working though... so I guess this counts as as good a time as any for the test even if we aren't in complete crisis mode here?

[michele]

We were in the PANDAS range but on the lower end. Dr. Latimer said that could also be indicative of a tic disorder (which he does have) and anxiety OCD which he also has. She felt we should treat the symptoms wih medications. Prozac and Clonidine. She does not suggest IVIG in every case. She wasn't even huge on antibiotics. My son does a toe movement all the time(walks on his curled toes), she said she saw little chorea at the appointment. He was originally diagnosed with chorea and tics with a positive strep infection and had elevated antibiodies to strep. It came on over night and didn't quit for about six weeks. Next infection it all returned again. Same pattern still occuring six years later. We have been diagnosed with PANDAS but still need to treat the underlying symptoms OCD, tics and anxiety. We currently use Risperdal, clonidine and Tenex. These are he same meds Dr. Murphy suggested two years ago along with Prozac. I am not happy with books and videos telling the public PANDAS can be cured with antibiotics. We have been on longterm antibiotics for three years and we aren't cured yet. Also these cured kids are still on SSRI meds! That isn't cured. However they are not bringing that to the public's attention in interviews. I don't want to mislead people to think this is going away overnight. We have young adults posting in their twenties still having symptoms 10 years later. Research still needs to be done on what the best treatment to reduce symptoms is. That is what we need to donate money to as a foundation not for people to go around not getting the correct laest information out to the public. Both those case were in the early 2000's. Alot has been researched since then.

I think part of what I am concerned about with the cunningham test is it coming back normal and me having no direction to go in. I mean, I would love for this to not be PANDAS but I actually would rather it be at this point because at least it's an answer. I know something is wrong, it screams PANDAS but what if the cam test comes back fine...

 

Anybody get results not indicating pandas and what did you do with that information?

We all go through this. It's nerve-wracking. So here is the deal - our neurologist felt that this test is one part of the picture. A positive is very indicative of a PANDAS issue. A negative means nothing. In the end, you need a clinical picture. Keep in mind for yourself, that you are the ONLY one that will know the results, unless you decide to share them. Very few doctors even know that this test is available.

[Megs_Mom]

Thanks everyone for the encouragement to go through with this.

 

feedjke, yep you pretty much have me pegged only my home will show all signs that I am not ocd on neatness...

 

Megsmom, I was thinking the same thing about the results only I think I will be going to my ped for the blood draw IF he is willing to do it so I guess he will know I did it... I don't think the lab will do it for me. I printed out the stuff that Dr. Cunningham just sent me (She got back to me fast!) and planned to bring it to my dr. to show him what I would like to participate in and ask him to do the blood draw but maybe I should really search elsewhere and leave him out of it? I don't know if I can get it done without his cooperation.

 

And another question: If I should do the cunningham test during an exacberration (no idea how to spell that) but he is mild and I am not sure if this is a full one or not do you think I should just go for it and not wait anyway? I mean, he currently has an increase in the throat clearing that he always has during a positive strep culture (his last positive culture was mid september and he's been on amox since). He definitely is having some of the behavior things but mild. Enough is going on that I know the amox isn't working though... so I guess this counts as as good a time as any for the test even if we aren't in complete crisis mode here?

 

Be sure to specify that this is a "baseline" draw with Cunningham's lab. They did that for us at the end of an episode (much easier to spell ), but it still was positive, even after pred & antibiotics. We'll do it again if she has another major onset. Then if it is "normal", you do it again if things get bad & you can show a causal relationship. Anyone can do the test, but it you tell your ped that you are "participating in a research study", they are always find with ordering the draw. I did not even call our ped, we just did it at a LabCorp - but it you are doing blood anyway, then get it all done at once! If your ped questions, again just tell him this was for a baseline.