Christianmom

You may still want to talk to some homeschool moms. They might have some other ideas because as I mentioned, they are often against vaccines (especially because they seem pointless when you're homeschooling). If you don't know of any, there is probably a support group in your area that you can find through the internet. You should have the same rights they have. So if they can get their children exempt some how, so can you. On the flip side of that, homeschooling alone will not get you out of vaccinations (at least not in PA). That makes no sense to me, but it is true. It is because homeschooled children in PA are enrolled in the school system. So if my children are therefore allowed, for example, to play sports at their local high school even though they are homeschooled, I have to have them vaccinated or exempt. Even if I choose never to use the school system in any way, I have to have them vaccinated or exempt. Do you think Dr. T could call the school and be of any help? He might be willing to go to bat for you, especially since he is in your state. Also, isn't PANDAS basically an encephalitis response? Wouldn't that be enough to get your children exempt?

I'm not sure if this applies, but I got a religious exemption in PA several years ago to keep my children from getting the 12-year revaccinations. They basically seemed pointless to me. I told the school nurse that I did not have a true religious problem with the vaccination, just a problem with it--basically didn't think they were necessary (this was before my son had PANDAS, so I didn't plead on those grounds). She said if I had a any problem with any vaccine I could use the religious exemption reason to get my children out of them. She said it didn't have to really be a religious problem--I just I had to have a problem with them. And really, she never questioned me about why I was asking for a religious exemption anyway--I offered the information. She didn't really seem to care. She only wanted to make sure I had signed a religious exemption form so that all the proper paperwork was in place. Maybe this is a valid option where you live. You might want to check with a homeschooler in your area. Lots of homeschool moms choose not to vaccinate. They may be able to tell you what to do. You should have the same rights as a homeschool mom and I don't think they can deny you that, even if your children are in school. Hope all goes well!

Thank you (again), Wendy. You have been a great help and encouragement to me. What is a complete viral panel? Is that an IgeneX test? I have an appointment in June with a lyme doctor with a good reputation in my area and I will ask about this.

Hi everyone, My son, 16, just had the HNK1 (CD57) Panel run through LabCorp. From my understanding the significant number is the: Abs. CD8-CD57 + Lympha = 100 My son has been on antibiotics for 7 months--mostly Biaxin which I know is used for lyme as well as PANDAS. So I would assume the number would have perhaps been lower 7 months ago when my son was originally diagnosed with PANDAS. Is that correct? Also, his hemoglobin and hematoorit were a little (very little) high. Everything else was normal. Could someone help interpret? We are awaiting IgeneX test results. Thank you.

Hi pathfinder, My son was only on rifampin for 4 days along with clindamycin. It was given to treat strep. We have not yet started treatment for bartonella--waiting for Igenex results.

Kayanne -- Yes, we are tracking mycoplasma (negative so far (assuming he's creating proper mycoplasma titers)) and we are pursuing lyme. Just submitted IgeneX testing yesterday. Thank you for your helpful response. MomWithOCDSON -- Does the doctor have any time frame of when you might be able to take him off of antibiotics? And do you know which antibiotics are macrolides and which are gluatamate modulators? Thank you for your helpful response.

I was wondering how long after being on long-term antibiotics you have your child checked for liver damage, etc. What tests did you have done? Thank you.

Has anyone tried this for lyme? Did you have good results? Thank you.

My son was diagnosed with PANDAS by Dr. T, but we are now looking into lyme because my son has not really gotten any significant improvement after 7 months on antibiotics and we don't want to do costly IVIG or PEX if it isn't necessary (or could actually cause harm). My son's LabCorp Western blot showed IgG P23, P66; IgM P41. We have been to a lyme doctor who looked at my son's chest and the underside of his forearms and noticed a very light pink rash. It is not raised or pimply. Basically it looks like a heat rash. The doctor seemed sure it was bartonella and said we would notice it more after a hot shower. But it seemed to looked the same to me after my son's shower. The rash is definitely there (though faint--I had never noticed it before), but I have heard that antibiotics can cause a rash that looks like a heat rash. My son has been on antibtioics for 7 months. There are no "cat scratches" or "stretch marks." We are waiting for further Igenex testing, but the lyme doctor wanted to go ahead and treat based on the rash, OCD symptoms, and P23 band. My question is has anyone here had this type of very light heat rash with Bartonella? I have seen pictures of Bartonella rashes on the internet and my son's is much fainter. Has anyone's child gotten a rash from an antibiotic? What did it look like? Thank you.

My son, 16, has been on high-dose antibiotics for 7 months. The antibiotics have improved his ability to handle his OCD better, but have done little to actually improve it. Out of curiousity I took him off of Biaxin (1000 mg.) because it didn't seem to be doing anything for him anyway. Within 24 hours he was noticeably worse. Within 48 hours he asked to go back on Biaxin. Within 24 hours after going back on, there was noticeable improvement. Within 48 hours he was back to where he was before he went off of Biaxin. I have read Saving Sammy, and he too regressed when going off of antibiotics, and I believe stayed on full-dose augmentin XR for 3 years. My question is why was this necessary? I have read that at high doses antibiotics can have anti-inflammatory effects (meaning that antibiotics do what IVIG does except it takes a very long time), but this doesn't especially make sense to me. My son is on curcumin (natural anti-inflammatory) anyway. Is it possible that the high dose antibiotics are keeping an infection at bay but not curing it--mycoplasma, another type of strep besides A (perhaps C or H), lyme, some unknown other infection? Does the fact that my son did poorly when going off of the Biaxin mean there is probably still infection there (though my son's ASO is now normal)? Is this possibly why his DNASE has risen instead of falling? I would appreciate anyone's comments. Thank you!

Dr. T told me ASO measure strep A, but Dnase can also measure other forms of strep as well, not just strep A.

I was wondering if anyone has changed insurance companies in order to get IVIG or PEX covered for their child. If you did, were they OK about a pre-existing condition, or did you have to wait a few months. And were you able to change insurance companies just for your child, and keep you and the rest of your family on your current policy?

That's really interesting, aren't all IgM's supposed to turn into IgG's over time if in fact there is a real infection? Is your son's blood work proof of cross reactivity then? I am ignorant of the lyme stuff, so I don't know how to answer your question. Can anyone else answer? Also, Dr. T actually ordered the Western Blot test three times (10/10, 1/11, 3/11). The second and third times the results were identical.

You might have to schedule a phone consult to get a hold of him. I have had to do that. Also, he is often free Friday afternoons and will answer the phone. Sometimes he is working Saturdays and will answer the phone then. If you leave a message with Anna enough times, he should call you back. If it is an emergency and you say so in the heading of your e-mail, he will answer you right away. You have to be careful that your e-mail doesn't ask a lot of questions. He doesn't have time to answer them. You have to make a consult for that. I guess I can understand that, but it is frustrating that he doesn't answer at all, even with a brief message asking you to make an appointment.

Western Blot test was run twice on my son (Dr. T). The first time was at onset of PANDAS and the second was three months later after being on several antibiotics. Here are the results: 1st test: IgG: P23,P66 IgM: P41 2nd test: IgG; P66 IgM: negative He also ordered the erlichia, babesia, and bartonella tests through LabCorp as per my suggestion. All came back negative. My son has no symptoms of lyme and has never had a tick bite that I know of.

My son had the Cunningham test done a couple of months ago and they e-mailed the results to me. I did ask them to do that though--I think the lady's name was Kathy. I can send you her e-mail if you PM. She is very kind and caring.

We are looking into possibly having to pay out-of-pocket for our son as well if insurance denies PEX/IVIG. The cheapest quote I got was from Crest in New Jersey (our closet location (though two hours away), but they have many others). They also do home infusions and would come to our home. They basically are willing to give us IVIG at the cost they would have gotten through our insurance company. Our son is about 115 lbs. and they gave me an estimate of $8,300. I was very impressed with the people at the New Jersey location. The pharmacist is wonderful, and he went to a lot of trouble to try to understand PANDAS--he had never heard of it. But I would think if pre-authorization is not required, that is a good thing. Doesn't that mean if a doctor orders IVIG, they have to pay for it? I wish my insurance didn't require pre-authorization. We are waiting for pre-authorization now.

Just wanted to post that my son has been on Cipro for 10 days with no improvement. So I guess he didn't have mycoplasma. Dr. T said if he did, it was very, very unlikely that he would still have it after 10 days of Cipro. So at least we have ruled that out. Thank you all for your responses.

pandas16 -- This is very interesting to me because though my son seems to be over his strep infection, he is much healthier, but not better (severe OCD). Perhaps he still has infection, or perhaps his immune system is just "stuck" and he needs IVIG or PEX. Prednisone is the only (temporary) relief he has gotten which tells me inflammation is still there. I think it would be fair to argue both sides of the issue: kids that get PANDAS have an autoimmune problem of some kind or they would not have PANDAS, yet the autoimmune issue seems to have at least been triggered by infection (theoretically if our kids had never been exposed to strep they would not have PANDAS now). So, though the immune system is the problem, infection is a problem as well? It seems that kids have had IVIG/PEX/HD steroids (i.e., fixed the autoimmune problem) yet have to go on prophylactic antibiotics to keep them from getting strep. If they don't, they end up right back where they started if exposed to strep again. So wouldn't this mean infection does matter even if the immune problem is fixed? This is a side note, but someone mentioned to me that they were pursuing lyme, not because they thought their PANDAS child had lyme, but because their child was not 100% after IVIG. The thought with pursuing lyme was that the lyme antibiotics treat lots of infections, not just lyme. So perhaps her child has an underlying infection that the lyme treatment would inadvertently get rid of. If I were to pursue lyme, I would do it for that reason. I don't think my son has lyme--no lyme symptoms at all, no known tic bite. Could I ask what immunomodulating therapy your doctor is using?

Tamistwins What did Dr. T give your son cipro for? Mycoplasma?

tampicc, I'm not sure what to say about your husband's walking pneumonia as it was two years ago. The titers Dr. T was looking at for our family were run last month. My son's labwork was done through Labcorp and normal is <100. So my son's was less than <100, but I don't know the exact number (just says "<100"). Our family titers were all in the 200's for IgG with a negative for IgM. So everyone except my son had clearly high IgG titers. Dr. T said this would mean we all got mycoplasma pneumonia, yet our PANDAS son did not. This is possible, just unlikely. But my children are older so I don't have issues with them drinking behind each other, etc. They don't even use the same towel when they wash their hands. So it is possible that he just didn't get the mycoplasma. The only other possibility would be that he just isn't creating mycoplasma antibodies. I realize this is just a hunch on the part of Dr. T. But I am willing to at least try Cipro. He said we should see improvement by Monday with lots of improvement when the 10 days are up. So I guess I'll know soon enough. I'll try to remember to post. Interestingly, I read over the internet that Cipro is used for lyme. I don't think my son has lyme, but I did think that was interesting.

Hi Everyone, Dr. T just switched my son's antibiotic to Cipro because our entire family tested positive for mycoplasma (IgG's in the 200's, IgM negative) except for my PANDAS son (IgG < 100). Dr. T said this was very unusual because it was highly unlikely that my PANDAS son would have been that exposed to mycoplasma and not gotten it. He suggested that perhaps my son is seronegative (does not create antibodies for mycoplasma). If this is true, my son may have mycoplasma but would be unable to clear it on his own (because his body can't create antibodies against it). He said Cipro is the drug used to clear mycoplasma when you can't do it yourself. He put my son on a 10-day course of Cipro starting today. I was curious if anyone else has tried Cipro and had success. I am aware of the side effects. Thank you.

kimballot -- My son has never had the prevnar or pnumovax vaccine. Prevnar was not part of his baby shots--he's too old for that--though he had all the others that were available at the time except the chicken pox shot (he had already had chicken pox). He hasn't had any shots since his kindergarten ones.

IgG was 905, IgA was 149, IgM was 97, and IgE was 9.

My son, 16, just got back his results for penumococcal titers, and I was wondering if anyone could interpret. Here they are: 1 1.18 3 0.43 4 0.14 8 0.72 9 0.3 12 0.55 14 0.33 19 2.36 23 1.27 26 1.5 51 0.72 56 0.65 68 0.55 The documentation that came with the test said that "concentrations of >0.35 are generally considered to be the minimum necessary to confer protection post-vaccination." I assume that means anything >0.35 is normal, but according to the mayo clinic website, anything >1.4 is normal. Can anyone tell me how to read these results? Would it be enough for a CVID diagnosis? Another oddity is that my son has never had the PREVNAR vaccine.