EMT2000

We haven't treated yeast...yet. Its a new one for us. I have heard that when the yeast is dying it can really cause itching! That would be beyond terrible if he got itchier as we treat, he will literally go insane if he gets any worse. What happened, if anything, to your DS when he treated the yeast? My DS does seem to get worse itching as the day goes on, but we think it's due to his tireing out and not being able to disconnect from it as well as he can after he's well rested. How did Dr. treat, w/ Fluconazole? We see her tomorrow, will definately be a topic we hit.

Thank you so much for the info, don't know Nystatin only Fluconazole....he's on double dose HCL child probiotics, but I think I am going to even go heavier than that due to the yeast.

Thank you so much, just reading that your son was accutely impacted (I'm so, so sorry) too but has made it through to the other side is so encouraging. Did every one of the IVIGs make your son get worse in his symptoms? Was it an up and down or just all down? My DS doesn't want to do them because he feels to rotten after them (itchier and nuttier mentally) although this last one was the best so I think I can get him in again with out too much fuss. It is SO hard to just 'wait' for the IVIG to kick in - especially when my DS doesn't think he's ever going to get better. Thank you so much for sharing your story, its very helpful to me knowing others have walked where I walk now.

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.

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.

We initially did 3 hdIVIGs for PANDAS with older DS. Six months post his last treatment he had rectal bleeding for over 8 weeks and we pursued an integrative LLMD in Northern CA to further investigate issue. We also found an 'unknown' parasite via Metametix, rectal bleeding stopped within 48 hours of starting Alinia but our son stayed on Alinia for another 5 1/2 months to treat. He also had itching as symptom. I would continue to pursue the "unknown" parasite. There are plenty of herbal treatments for parasites if your Dr. will not prescribed like Para-A, Para Comp and Healthforce parasite cleanse, etc. Can you share with me the nature of the itching: was it all over his body or localized in the 'typical' area? We decided to do another test with Parasitology Center even though he's on antibiotics to see if we can get more information. Really appreciate the rec's for the herbal treatments as well.

HD= High Dose IVIG= Intravenous immunoglobulin Thanks, didn't know the 'high dose' acronym!

yes, my dd has had 3 HD IVIG's and each time the first week (or 2) after is rough...then things slowly start to get better. Have you tried quecetin for the itching? When did the itching start? Could the itching be related to some kind of a food allergy? Oh, sorry to ask a silly question; but what is "HD IVIg"? Thanks for indulging me~

Us too, and way way back we had the standard parasite test done the hospital ordered; negative of course. Then working with Dr. Jerry Kartzinel (CA) he had a complete GI work up done via Metametix (450$)and he came back positive for 'unknown parasites' so he was treated with Alinia but still tested pos again on that same test - which couldn't tell what exactly it was...so Dr.Jerry found The Parasitolgy Center in Scottsdale, AZ and all they do is Parasite testing, etc. they said they would totally be able to tell us what it was, but he has to be off antibiotics for 10days!! I have no idea when that will happen, and our PA NDAS Dr doesn't think that's what is causing the itch, it was such an overnight sudden onset and he was pos for Strep....So we are just doing nothing about the supposed parasites right now, which also really bothers us.

We have done an Ibuprofen therapy on its own, months back, and during both IVIg's Ibuprofen every 6 hours and then for the following 7 days as well. I think that's more to prevent headache and such....

yes, my dd has had 3 HD IVIG's and each time the first week (or 2) after is rough...then things slowly start to get better. Have you tried quecetin for the itching? When did the itching start? Could the itching be related to some kind of a food allergy? Itching was really his first PANDAS symptom after painful ears, it felt like it fell out of the sky on him overnight, and it's not ever gone away (9months) while all the OCD anxiety stuff has roller coastered all over the place since then, but the itch seems to always be there, although it does go up in intensity as well, but its always bad. It moves all over his body, constantly, and a Neurologist we saw said he thought it was a tic and an excess of energy in his brain being released, and my son just 'reads' it as itching. We really dont know of course. We tried Quercetin about 2 months in, but no luck. He also did a really intense food elimination diet, no luck. Thank you so much for sharing your experience re/ recovery and time line on IVIg, so helpful to hear others experiences.

You are my second PANDAS 'friend' from Oregon, wow..We also see Dr.Keller, and love her, & so does my other OR friends son. My boy has tested positive, as well as my husband, for Strep again since IVig, and I was suspicious that my son was positive B4 we did IVIg but Dr. K didn't feel he needed to be retested so we didn't. sigh. That's why we havent seen any improvements since, in fact he's the worst, mentally, we've ever seen. We will be on board for IVIg again after Clindamycin for 2 weeks and 3 negative throat cultures. I agree, it seems like the last resort, although I would like to investigate PEX more. Dr.Keller has only done it once w/ less than fantastic results she said. We saw some overall calming and zero jerking or twitching after IVIg, but then of course that durn Strep had gotten him rolling again so it was a short lived victory. Stay hopeful, and lets keep in touch. We are physically moving over the course of the next 5 days so if I'm slow on replies I apologize in advance. Take care My son also had 5ths Disease, in '07 and I think it was either his first or second exacerbation now that I 'get it'.