New to this...

[hkp901]

We are testing for Strep today. My son is starting to hate needles. Is there anything else I should test him for (like Lyme) at the same time to eliminate the need to come back and draw blood again. He throws a temper tantrum which is not good for all his tics and stress levels.

 

I am new to this. I am reading "Childhood Interrupted". It has been eye-opening. I just realized what the possible situation was last night and I am overwhelmed to say the least.

 

Any referrals or advice is appreciated.

 

Thanks.

Heidi

 

[ktdommer]

Having a sick child is a lot to deal with. Having a child with possibly PANs and or Lyme is a lot.

You are smart to think about limiting pokes but I don't know how open your doc is going to be to testing. A regular western blot at a local lab probably won't catch Lyme disease, especially if an older infection.

Igenex labs is the best place to test. A Lyme doc may want to do an antibiotic challenge. The timing of all of this would be difficult. With Lyme and coinfections there are a ton of labs. A good doc will be able to prioritize what needs to be tested first.

So does your son have A PANS doc? How old is he?

Feel free to post often and ask questions as you begin this journey.

I know your heart is breaking and you are worried. Make sure to take care of yourself, too. I'm sorry you are having to go through this time of unknown.

Best wishes,

K

[4Nikki]

Ask the Lab, if they have home service or if there is someone is doing home service in your area. We have found that many doctors actually order home service for patients that are older or have mobility issues. Before we moved to Northern Washington we found one oof the technicians would come on a saturday and charged $60

[MaryAW]

This is an excellent site started by the leading doctors in PANS. It will be helpful to your pediatrician as well. Remember that PANS and PANDAS are a clinical diagnosis and the strep titers and other tests only support the diagnosis. My DD never tested positive for strep. This should answer many of your questions.

 

https://www.pandasppn.org/#

[airial95]

Get a prescription from your doctor for EMLA cream, it's a numbing cream that you put on the skin an hour before the poke and they don't feel a thing. Once they realize they won't feel it, it can help with the freak out factor.

[hkp901]

Thanks everyone. All your advice helps.