Second Opinion - which?

[ibcdbwc]

We were doing well for a long stretch but have started to get monthly sinus infections and flares again. IgE is 600 now. Subclass IgG3 is 8 (quite low). Igenex pending. Currently on Ceftin and responsive for now but I fear a breakthrough flare. Flares are classic PANS flares (OCD through the roof) with severe slowing of cognitive processing skills. Gut health also an issue with positive celiac antibodies and major histamine issues, constipation at cetera. MTHFR 1298 homozygous.... (we are also in therapy)

 

We see Dr. L who wants to do tonsillectomy (despite negative strep titers/tests - they were positive in younger years) followed by HD-IVIG.

 

Looking for a great functional and/or second opinion doc first? Who do you recommend? Dr. O- hara? We will travel anywhere.

[jan251]

Thinking out loud, I'd probably want to get the Igenex results back first and also consider types of infection might be hiding out in the sinuses. Maybe the doc wants the tonsillectomy in case infections in the tonsils can cause sinus infections? (I have no idea. I'd feel reluctant on that too.) Ceftin might address strep, lyme and bart.

 

If the immune system is not functioning well, then perhaps it makes sense to do the IVIg in addition to treating for infections, though I'd wait on the lyme results. Has mycoplasma been tested?

 

Is he already gluten free?

[ibcdbwc]

Thanks so much! I agree. It's probably best to wait for the Igenex. Yes he's been gluten free for several years (though I'm betting he gets a lot of cross contamination at school).

[dasu]

We also looked for second opinions. Our kids got better with abx, then that stopped working. We graduated to IVIG which worked the first time but not the second time. Insurance does not want to cover PEX so we are pretty much stuck. Getting to (PANDAS kids and travel do no go together) and affording other doctors can be difficult.

 

I would recommend getting your primary care doc to test or refer to rhumatologist and pediatric endocrinologist first. This is what we did. We got our primary care doc to do a variety of bloodwork and tests like Igenex. All negative. We got a referral to a pediatric endocrinologist who found thyroid function OK. We saw a rheumatologist who found high ANA and RNP antibodies but didnt recommend treating. But at least we got information so if and when we see someone else it may be helpful.

 

We are trying homeopathy now and slowly moving towards the REID diet.

[LNN]

Agree - wait on Igenex results. If they are anything less than whistle-clean, I'd recommend Dr M in central CT - he treats both Pans and Lyme and also treats Marcons - antibiotic-resistant staph infections in the sinuses. We've been with him for years for both kids (started with Dr L, then Dr B - neither could get to the bottom of things - my kids were just too complicated). My son has been symptom-free and off all meds for 3+ yrs. Dr M is currently helping my daughter. He's integrative - uses both antibiotics and supplements and a variety of options depending on your needs and medical preferences. His wife is a homeopath in the same practice if that's your leaning now or in the future. PM me if you want his contact info.

[Sirena]

For what it's worth, we did do tonsillectomy and got kiddo 85% back--until next infection kicked things up again...

igenix testing very helpful and I hope you got full set of them...

[ibcdbwc]

Thank you for all of your helpful comments! I appreciate your advice. Sirens - what do you mean by full set? His test did include coin factions.