Where to even begin

[Missmom]

Strep can also reside in the nasal canal, and because you mentioned sinus issues I just wanted to point that out. If necessary they can swab that. I am sure dr. K will run all the necessary labs and you will start getting some answers.

[norcalmom]

Personally, I would go to Dr K, and to a LLMD. There is a list of labs to hunt for infections pinned at the top of the board - Lyme and Co-infections and I would highly recommend you get some mycoplasma testing done - which any doctor can do for you. IgG and IgM. If IgM positive - you have it for sure, and its probably a fairly recent infection. If IgM is negative - and IgG positive, you probably have an active infection (your doctor will tell you otherwise - ignore them), and get the IgG test done again in 3 or 4 months - to see if it is going up. That indicates you have a chronic infection (IgM eventually goes done in chronic infection - but the IgG conftinues to rise).

 

Get a basic immune panel - IgG, IgM, IgA - the 4 IgG subclasses, and strep pnemonaie titer panel. I'd also get some lydococaine (or equivalent - it is a prescription numbing cream) to numb both of the inner elbows prior to having labs done. Nothing worse than a PANS kid with needle phobia...and one bad poke is all it takes!

 

There are ALOT of kids with PANS - but didn't have a postive strep titer.

 

IVIG really helped my son a lot. He had tics, and rage, and still has some OCD that is triggered by me. I'd say IVIG got him about 70-80% better, but he would start to slide back after viruses (not as bad as before) we did two IVIGs - before finding out he had a chronic mycoplasma infection! He had NO physical symptoms of mycoplasma, and he did not have IgM positive - three doctors had to eat crow because when we tested it again and saw the IgG going up (significantly) they all agreed he had an active infection. And, he had been on full does azithromycin for months before -. So, that antibitoice did NOTHING to combat the mycoplasma - although I have to say when he went on azith originally I saw him get much, much better in first couple weeks. And for a few months, I thought we would be one of the lucky ones that didn't need IVIG...wishful thinking.

 

My son just started a homeopathic treatment too. I am coming at this from the opposite end that you started with - we started with antibiotics, then IVIG, then stronger antibiotics (combined with herbs for mycoplasma) and now brining in homeopathy. I almost gave myself a nervous breakdown prior to first IVIG - for no reason. I know its a little scary, but after I saw how much netter he got, I knew when he started to slide back 8 months later I would not wait for things to hit rock bottom again. I wish I had not waited so long to get the first one. I think you don't know how bad it is sometimes because it becomes your norm, and we forget what truely normal is.

 

DS is not there yet - but he continues to get better - IVIG gave him a hug bump. I don't know how many years it shaved off this process, or if it would even be possible to get where we are today without it. That was our experience. I wish you the best with your son and getting him healthy whatever treatment you choose.