You have a lot of questions, so I'm going to try to answer them one at a time:
1) Your primary question is about Dr. K or Dr. T. IMHO (and I've worked with Dr. K, Dr T, Dr. L, Dr. B, and more), they really all do primarily the same types of treatment (abx, IVIG, PEX occasionally) it sounds like, that you've already tried. I really don't think you're going to get much help that is different from either of them.
2) That being said, I would be looking to see if there are other infections going on. I know we talk a lot about lyme and co-infections, but it does present in some pretty interesting ways. My DS used to get these horrendous shocks in all parts of his body, and it would make him scream and drop to the floor (sometimes felt like a sword was being stuck into him or an electric shock.) I finally found out that was a symptom of lyme, and sure enough he has lyme, bartonella, babesia, and erlichicosis.
3) You also asked about flushing and constant nausea. My DS gets both of these with strep, so I'm wondering if you haven't gotten rid of the strep. You mentioned ASO titers at 800? Are these current numbers? If so, maybe it's not responding to oral abx. DS has had IV abx, but then got sick again, and now we have been doing bicillin injections weekly (it's been 9 months now). So, I'm wondering if doing IV abx or weekly bicillin injections might be the way to go for chronic strep. But, that being said, I really believe that you should be looking for other infections, too, because since the immune system is affected, your child is probably not just dealing with only one infection.
4) Then, you should also see if your child is able to get rid of toxins. Check for MTHFR gene mutation, and if so, it is pretty easily treated with methylated B vitamins and folate.
5) On the same note, check vitamin levels, such as B12, and D (I've read that vitamin deficiencies can cause itching, and even read that possibly too much vitamin D can cause it. Also, what about zinc
6) Your child might also have developed a bad yeast infection with all the abx he's been on (probiotics are great, but doesn't always avoid the yeast buildup) Many of our kids are on taking nystatin or diflucan. Are you seeing any eczema?
7) Then, someone recently told me about not eating certain types of foods
8) Finally, another idea, made be...is the itching possibly seizure activity? Since you mentioned lamictal, that can be used for mood and for seizures.
So, here are some ideas to look into. Good luck.
OMgosh so many good ideas here; but another question for you - how did you get to the ABX via IV? Was your DS still testing pos for Strep but no traction w/ oral ABX> my DS is testing neg to Strep now for 2 months straight...could he still have Strep, I think yes.
And you bring up a great point: the flush and naus can be Strep symptoms still. Sigh. Oh, he definately has a yeast infection now after 5 straight months on heavy doses of abx, no excema, but he had a GI culture done to identiy the parasite (supposedly it's a 'who cares' parasite) and the yeast came back high. Not causing the itching though, it's neuro, I'm certain of that. We have gone down the co-infections route to no avail so far. We see a LLMD next week who our current Dr. referred us too. DS has had 2 Lyme tests, both neg, and our CA doc said now he's had IVIg he will test pos to Lyme and the others because of the antibodies he's been given, so we can't trust those tests now. But DS had a suspicious bite a year ago that did get target shaped. The pediatrician just said spider bite and I could see the puncture hole. Seattle Childrens Hosp poopooed any ideas we had of Lyme and later we came to find out that our admitting Dr suggested PANDAS on the intake forms, but they just blew us off and it took me another 3 months to get the diagnosis after I figured it out. His B's are ok, his D is super low, so I was high-dosing, but after reading other ACN blogs I've almost stopped it altogther, his zinc is way, way low so we suplementing that. going to check out the MTHFR, and he's been basically on such a elimination diet all he ate was rice and water for 10 + days then added chix and pears. Nothing. Now w/ the stupid arsenic in rice so much (and his levels are, yep, high) no more rice for him. Honestly. Ok, really I thank you SO much for all the wise words, really wonderful.
