Timing of bloodwork?

[kc35]

Since I'm new on here I am giving a recap of the situation. My DD 6 has been showing signs of tics on and off (mostly off) since last fall. But this fall it has gotten worse. I have also noticed some OCDish type rituals of doing things until they feel right, which I've never seen before this fall. As I mentioned I am still trying to determine if this is PANS or Tourettes/OCD. In my neck of the woods PANDAS is not really accepted. After describing her symptoms to a Dr in my area whom I found on the PANS/PANDAS website, he said she most likely has Tourettes and not PANS. But he is not an expert and probably only recognizes PANDAS brought on suddenly by strep.

 

My DD has been sick with various things over the last 4 weeks. She was diagnosed with walking pneumonia last week and prescribed a 5 day course of azithromycin. During that time I noticed her big tics diminished quite a bit. She has only been off the abx for ~ 3 days. We went back to her regular ped Dr yesterday who said that her lungs sounded clear and therefore didn't need anymore abx. He does not know about PANDAS and didn't seem to believe in it. However I finally convinced the Dr to test her for the main infections that people on here mentioned being: AntiDnase-B AB serum, Anti-Streptolyson O titer, Lyme IGG/IGM titer (He wouldn't agree to Western Blot) and Mycoplasma Pneumonia AB IGG. My question is this, at what point should I get her tested for these things? She was exposed to strep 2 weeks ago by a girl in her class. However a 48 hr test showed no strep and no visible classic symptoms of sore throat. She just finished her abx for the pneumonia 3 days ago and still has a cough. So should I wait a week or two to test her to see if she still has the infection. I'm worried if I do it soon, the effect of the abx in her system recently will mask the fact if she still has an infection. I don't want to mess this opportunity for these tests up, since I may not get this chance again. Thanks in advance for any thoughts on when I should get this bloodwork done. I'm thinking a week or two from now, what do you think? Thank you.

[Dedee]

You can go ahead and test. The titers will stay elevated for weeks. For your Mycoplasma, you must get both a IgG and IgM or you really will not know what you are dealing with. The IgG will only tell you that she has had a past infection. You already know that. You need to know if there is current infection which is what the IgM shows.

 

As far as the physician is concerned, throw him out with the bath water. Those who don't believe in PANDAS / PANS aren't worthy of your time at this point. There won't be any convincing them. PANDAS / PANS is well documented with evidence based medicine and providers with their head in the sand aren't worth your effort. You need to seek a PANDAS specialist or a LLMD immediately. You say your child has OCDish rituals and does things till they feel right. This is very classic. The therapist at the PANDAS clinic calls this "Just Right" OCD and evidently it's very common. The child really can't explain exactly why they do something but they just know that they have to do it to feel "just right". OCD is very hard to identify in kids and there are probably many things going on that you aren't aware of that fit into that category.

 

You are on getting a good start with getting the labs but you need to get an appointment with someone who will know what to do with the results. You can go to the pandasnetwork.org site and get a list of providers. Best of luck.

 

Dedee

[msimon3]

Any doctor who suggests your DD is more likely to have Tourette Syndrome vs PANS had better be an expert on Tourette Syndrome and/or PANS. Speculation based on weak experience is weak speculation and should be considered appropriately.

 

You will benefit from finding and using doctors who have a background in PANS, Lyme, infectious disease, neurology, or immunology who also are willing and able to explore and discuss potential causes with you. Seeing multiple doctors will give you the benefit of getting varying clinical opinions, some of which may be helpful. Testing may also be helpful and should be pursued, but just keep in mind that testing is not perfect -- many tests have false positives and false negatives and you need to consider what the test results really mean. Testing generally is *not* done while on antibiotic therapy, however the timing of the tests and therapy really needs to be directed by the doctor who is treating and testing.

 

The observation that your DD has reduced symptoms while on antibiotics is important. Other observations like tic/OCD activity while sick, while healthy, while stressed, or while eating certain foods might also be important. Any symptoms besides tics/OCD may also be equally important. Keep a detailed log or journal. As you continue down this path, your recorded observations will be more and more important to doctors, especially if testing proves inconclusive and clinical diagnosis is necessary.

[3bmom]

I agree with everyone. Get a new Dr. And tell the pediatrician to go listen to Dr. Swedo at the national pediatrics conference in Florida next month. A lot of kids are asymptomatic for strep, meaning no sore throat or visible symptoms except behaviors. The only way to know is thru blood work. Both ASO and antiDNase since they can be opposite of each other. Cultures can be negative because strep likes to hide. Mycoplasma pneumonia ( walking pneumonia ) is also a main culprit for PANDAS. My DS has been treated one year and his titers never dropped till I got treated. We are both asymptomatic, meaning lungs are clear. You are 2 for 2 for infections and the quicker you get this addressed the quicker your daughter can get back on track. Good luck!