Motherof2

Dedee, I just sent you a PM. Thanks. Motherof2

Rowingmom, I'm sending you a personal message. Motherof2

I have heard that she studied with the great Dr. Jones in CT. We need someone who can help us figure out if my kids have congenital Lyme disease. Would appreciate input from anyone who has seen her. Thanks Motherof2.

HI Kleek3 and EmilyK, What were your myco-p IgG levels? My DS13 IgG level was 3.83 in April, and is down to 2.32 now. His IgM level was always low. He has terrible OCD, and his Cunningham panel was high. Family tests revealed IgG 2.32 for me, 4.00 for husband, and 4.03 for sister. IgM levels were very low for all family members except sister, whose levels were almost positive. (647 when 770 is positive at quest). At what point do you treat family members? Do your doctors treat high IgG levels, or only high IgM levels? Thanks. Motherof2

My son's IgG titer was 1:160, which was slightly elevated, but IgM was very low. Report says past infection. How can you tell if there is active infection ?

THanks.

Well, we went back to the surgeon today. He promised to culture the tonsil and adenoid tissue next Thursday, and also said he would do nasal endoscopy and culture any drainage he saw coming from my sons sinuses into the nasal passages. He had never heard of a deep nasal culture, but I guess if he goes back there and looks for anything unusual and cultures it, that would be OK. He has been so accomodating. He had heard of PANDAS during his residency in NY. THank God he came to SC! I also asked him to hang strong antibiotics during the surgery. He plans to hang clindamycin 600 mg, and he told me to give my son augmentin 875 bid for the week before surgery. I hope this sounds like a good plan to everyone. Thanks for all your suggestions. Motherof2.,

Hi Philamom, Sounds like great news for nervousmummy as long as her baby hasn't been on antibiotics recently. My son has been on antibiotics for 4 1/2 weeks so can't do culture. I called Igenix and they told me antibiotics could affect some of the Lyme and other coinfection testing, but a LLMD might be able to interpret them anyway. I'm not sure what to do. I wish I knew a LLMD that would do a phone consult. Do you know one? I live in SC, which is totally Lyme ignorant. Motherof2

Rowingmom please PM me. I have several questions for you and I don't want to overwhelm this topic. THe Lyme test was the basic screening test done by Quest, which I know is not dependable. I know we really need the Igenix test done and I have already mentioned to our doctor. Problem is the PCR part of the Igenix test may be affected by antibiotics and my son has been on antibiotics for a month now. We can't stop them because he is having his tonsils out next Thursday. To be honest I am scared to stop them because his myco-p IgG was positive. He is currently on BIaxin 500 bid. Norcalmom, I already asked our doctor about rechecking the mycop IgG and she said too early to check. I agree with you- I think we may be seeing changes in the IgG level if there was active infection and the IgG level would be stable if not. For now I will defer to the doctor. The Cunningham panel has been drawn and we are waiting for results, but Dr. K in Chicago says that would not stop him from giving IVIG to a PANDAS kid if the Cunningham panel was normal. I paid $500 for a phone conference with him. What I really desperately need right now is some guidance about what tests to order to look for co-infections. Mayzoos list was very helpful-thank you. The fungal/yeast suggestion was interesting, but how would I test for it? My son's PANDAS doctor has just started seeing patients. She has a heart of gold, but I want to make sure we are not MISSING anything. I am sure she would be willing to order whatever I reasonably suggested. We are strongly considering IVIG next month, but i don't want to make the mistake of missing co-infections and then having IVIG failure because co-infections weren't adequately treated prior. If you guys know other members who could chime in with some advice for me, could you please PM them too and ask them to respond to this topic or respond to me personally. Like so many other mothers out there, my life has come to a screeching halt. My son has declined rapidly in the past four months into terrible OCD. He had a bad strep throat last July and really hasn't been the same since. Just before his rapid decline he had an orthodontic appliance placed in his mouth. (I found out later from Dr. K that dental work can trigger a PANDAS flare) I wish the cure was as rapid as his decline has been. Thanks. Motherof2

How do you test for the yeast issues? Is there a blood test? Thanks. Motherof2

Thanks everyone. Does anybody remember what IV antibiotics the ENT hung during the surgery? I think I read somewhere about clindamycin and rifampin, but I can't remember where I saw it. Motherof2.

Hello MDmom, I am brand new to all of this and I already see what you mean about thin slicing. I don't have time to waste with a doctor that doesn't listen. Please send me a personal message so I can speak with you via email. There are similarities between our children, and I think you would be a wealth of knowledge. For some reason, I am unable to send you a personal message on this site. I'm so sleep deprived at this point it may be me and not the site, however. I look forward to hearing from you. Motherof2

My 13 yr old son with sudden onset OCD and tics is having his tonsils and adenoids out next week. I need input from other PANDAS parents about what antibiotics the surgeon needs to hang during surgery, and what cultures should we request be done on the tonsils when they are removed? I know this is a one time opportunity and I don't want to screw it up. Any other advice would be greatly appreciated also. We desperately want to help our son! Motherof2

Hi Philamom, I am in process of trying to get my 13 yr old son tested for lyme. He has sudden onset OCD and tics. Of course the basic screening test at Quest was negative. Which lab is better for more detailed testing, Advanced Labs or Igenix labs? I'm sure that nervous mummy would appreciate the knowledge too. If there is any way you could shoot me a personal message, in addition to answering the question here, I would really appreciate it. I am seeing similarities in our children's histories and I think you would be a wealth of knowledge. Thanks. Motherof2

Nicklemama, I tried to send you a personal message and could not get through. I would like to speak with you further about Dr. K and IVIG, and also what co-infections I need to have my son checked for before we proceed with the IVIG. I am new to the forum so forgive me if I am breaking any rules by trying to contact you. Could you please send me a personal message with your contact info? I am desperate to help my son. We also have BCBS. Thanks. Motherof2