Betty04

My son has very elevated C3D immune complex levels. I have searched past post but not sure why some post say IVIG is contraindicated? It sounds like Dr B and K have been measuring C3D, would anyone mind sharing their take on elevations. Thanks!

She failed all 12 tests on the pneumococcal panel. She got 1.5g/kg Really appreciate you sharing Momaine. It helps me in determining what may be beneficial for my ds.

Momaine, Would you mind sharing whether your child has immune deficiencies and the dose of the IVIG? Thanks!

Thanks for the laugh! I thought I was the only one shaking at the pharmacy counter until I got my next antibiotic "fix."

Hi Faith, Sorry I should have clarified that I live in northern ca. But last week we were in San Diego visiting family. It was definitely colder than usual, I was freezing at legoland! I really don't know what allergens are supposed to be worse out here. I just know that they are different since the vegetation is so different from the east coast. For example, I tested highly allergic to olive trees, my skin turned red, eyes burning, sneezing... I was never exposed to olive trees growing up on LI! But since you mentioned eating junk food I was again wondering about the immune/gut connection. I understand you tried the pandas route and truly until 2 weeks ago I was ready to abandon it. But now we think my son has strep in his gut and clindamycin is working where azithromycin and augmentin both at high doses were doing nothing! It's all so complicated but I just wanted to share my recent experience because I felt like you only 2 weeks ago in not knowing what else I could possibly try! I am awaiting stool sample kits from doctors data following recommendations from my dan doc to rule out an overgrowth of bad bacteria and parasites. Neomycin is not in the same category as clindamycin. If you look at others posts you will see some with GI issues have improved with flagyl and vancomycin. Again just my thoughts and experiences in case they may provide you with some thoughts to help your son. Hope things get better soon!

Faith, Just wanted to first agree with Patty that the allergies in CA have been horrible. I was so sick this spring having moved from the east coast where I no longer had allergies bc I was treated with shots. When I went for local allergy testing they tested a bunch of environmental things that do not exist on the east coast but I was reacting terribly to. Maybe try the saline nasal washes bc even if your son has no congestion the saline reduces inflammation in the sinuses. The other thought I had was did your dan doc do stool testing? With all the anti fungals you are doing maybe there is bad bacteria in his gut that needs treating and that is why the negative reaction. My son has never complained of stomachaches but a recent trial of clindamycin dramatically improved his stools and tics. We are still trying to figure out why and not saying that your son has strep or other bad bacteria in his gut but I did want to mention it? I hope things calm down soon as I know the feeling of having tried everything and just not knowing what to do next! Take care!

Thanks everyone for the support. I know that unfortunately you can all understand my despair! I went to my local library to get a copy of Cure Unknown on interlibrary loan so it should be here next week (thanks SFMom for that suggestion). EAMom I know you are right about boys and tics. All the Pandas experts we have consulted with (except we have not spoken with Dr L) have advised against plasmapheresis for my son due to his immune deficiencies. I am not ready to give up just need an avenue to pursue... but thanks to everyone's feedback i'll re-evaluate the Lyme and do some light summer reading of Cure Unknown

Thanks for the support SFmom! Believe me I don't want to give up but seem to be running out of options. Yes we just re-ran the Igenex igg and igm and co-infections. Igg and co-infections all negative. Igm was indeterminate but really only band 41 was positive. I agree with your view on the TS diagnosis when we don't have a family history and his tics have responded to antibiotic.... After fighting this battle for almost 3 years I just don't know what else we can do!

We are currently looking into this issue. My DS5 is 11 weeks post high dose IVIG with no response. Brief summary of his history is tics began at 18 mos following severe sinus and ear infection. By age 3years he had tubes in his ears, adenoids removed, tonsils removed and sinus surgery. He has low iga and igg. His Cam Kinase last September during an exacerbation was 142 while on daily Azith250mg. His tics have positively responded to augmentin and clindamycin in the past. He has never had a positive strep culture or elevated titers but has had the canary response strep at school. One Pandas expert we consulted with said to question his diagnosis since he has not responded to IVIG and he has a tic only presentation. The only other diagnosis that would fit is Tourettes, so maybe it's time to accept that? Circling back to the topic of this post, we pulled my son's titers at 6 weeks post IVIG. His ASO was 94 and his Dnase was 192 and streptozyme abnormal and his mycoplasma Igg was high. His Igg level was 1000 (pre-IVIG his igg was 400 so obviously there was still a significant amount of donor antibodies at 6 weeks or a miracle occurred and we jump started his immune system). Prior to Ivig his aso during exaccerbations measured at <6 and Dnase measured <60. So you can see and as would be expected his strep titers increased post ivig. Since he did not respond to ivig we are questioning what role his current level of strep titers may have played. We are planning to retest his titers at 3 months. An increase would be significant as my son was pulled out of school and has been home with no exposures since the ivig. All family members have cultered negative and no elevated titers. Sorry if I just hyjacked this thread, just venting my frustration at having no response to the ivig and thought it might be helpful to at least bring up the topic of tracking titers post ivig for some who do not respond or never had elevated titers?

Yes there is a long gap between titers. We stopped running them because he never had a positive culture or elevated titers. He was in an exacerbation when we had the IVIG so yes his titers could have been elevated because of an exposure.... though they were never elevated in prior exposures/exaccerbations. We are now 8 weeks post IVIG with no response to the IVIG. He has been on Azith and Augmentin post IVIG with neither showing a response. What does an abnormal streptozyme mean, as his ASO and Dnase are higher than they ever have been but I think are still low/normal? Thanks for your help!

Hi, I was very interested in anyone's feedback regardin my son's titers. He is currently 5 years old and lab work was just done at 6 weeks post IVIG. He has never had an elevation in titers and was just curious what others thought as you can see his titers are are their highest post IVIG. Is that the donor antibodies or a change in his immune functionning? We also never measured streptozyme until post IVIG. I don't know what his results mean but he does have abnormal streptozyme screen and titers.... Lab Value 12/07 2/08 8/08 *6/10 at 6 weeks post IVIG ASO <25 <6 <6 94 Anti-Dnase <50 <60 <60 192 Streptozyme Screen Detected – abnormal Titer 1:100 - abnormal Any thoughts will be greatly appreciated!

As many others, I have been there.... the most helpful thing a friend asked me when I was upset my son's tics returned was, "is he happy?" If your son is happy and enjoying vacation, try and take some comfort in that! Wish I could say something more to help, but obviously too many of us understand. Take care of yourself!

http://www.fda.gov/BiologicsBloodVaccines/...s/ucm214365.htm Just wanted to post this not to alarm anyone, but if someone had IVIG with gammagard and had any side effects it may be due to these specific lots and not IVIG in general. We did not have gammagard but we were neurotic enough to write down the lot numbers for situations like this!

Hi what dosage of iVIG did yoou use? melanie Swedo high dose over 2 consecutive days

I just PM'ed you... let me know I did it right... its the first time I have initated one and not simply responded to a PM!

Thank you! I was planning to call IGENEX tomorrow but now you have taken the worry away of whether we can get accurate results! I have an IGENEX kit, are most labs able to draw the blood accurately? I would imagine I would take it to FEDEX but was wondering how complicated the kit is? Last time we did the test with my DAN doctor in CT, so its almost routine there. Now we are in Northern CA and when I called our local hospital's lab, they said I needed to get the kit and they would draw it, but I was just wondering if they would do it right? Thanks again for giving me one less thing to worry about today!

I think the majority fade after 4 weeks but there are still donor antibodies present at 3 months? quote name='peglem' date='Jun 5 2010, 09:45 PM' post='70350'] I believe the donor IgG lasts about 4 weeks.

My son is 6 weeks post IVIG and we are looking into ruling out co-infections since we have not yet seen any response to IVIG. Does anyone know whether IVIG would possibly create a false negative or positive? We were not sure if donor antibodies might create a false positive (i.e., donor had lyme or co-infection) or if somehow the donor antibodies might suppress results creating a false negative? Any thoughts or experiences would be grately appreciated!

Thanks Elizabeth. I am glad to know we have good docs in the area for Lyme. After hearing your experiences I am starting to think there is no doubt we need to further investigate Lyme and co-infections. Thanks for replying so quickly, I have been obsessively checking for responses since I posted.... when I re-read my post I think, of course look into Lyme, duh!

My son is currently 4 weeks post IVIG. I had contacted Diana P to see if she could connect me with other mom's of PANDAS kids with similar histories as my son. In brief, my son is 5 years old with a tic only presentation and low IgA, IgG,and IgM... depending on the immunologist he is either healthy(yeah right!) or immune deficient (we have consulted 4 immunologist with 4 different opinions!). Diana was kind enough to put me in touch with 3 moms who have children with tics only. Well all 3 said to me have your son tested for Lyme as all 3 of their children have co-morbid Lyme and PANDAS. Our history is that we used to live in CT (Lyme central!) and now live in Northern CA. My son tics developed while we lived in CT, we had a Western blot (I'll post those results below, considered negative?), and subsequent to this Western blot he did have a tic bite. The tic was definately latched on as he woke up one morning with it enbedded on the outside of his ear. I took the tic to our local health department. They told me it was not a deer tic that typically carries lyme but a dog tic. They told me this type of tic could carry rocky mountain spotted fever but they would not test for it since we were on the east coast and unlikely to be present. Here are my son's results from IGENEX in 2/08: IfA, B BURGDORfERI G/M/A 1:40 TITER INTERPRETATION Of ANTIBODY TITERS: <1 : 40 NEGATIVE 1: 40 INDETERMINATE = OR >1:80 POSITIVE 18 kDo Negative 22 kDa Negative **23-25 kDar Negative 28 kDar Negative .30 kDar Negative ~*31 kDo INDETERMINATE **.34 kDo Negative **39 kDa + **41 kDar +++ 45 kDa! Negative 58 kDat Negative 66 kDOl + 73 kDOl Negative **83-93 kDOl Negative Does this warrant further investigation or is this a negative lyme? And truthfully maybe we were neglectful not retesting after the tic bite... but do I need a lyme expert to fully evaluate any co-infections? Thanks for any feedback, I just really was struck by Diana putting me in touch with 3 moms of tic-only presentations and they all have lyme!

Hi, My son has low IgA and IgG and would like Dr Bouboulis opinion on his immune functionning. We will be in CT in July so we could do an office visit then, but I was hoping to do a phone consult prior... does he do them? Thanks!

Thanks for your response. My son was on benedryl for 2 days during the IVIG and the day after the infusions were completed. He had two 12 hour infusions separated by 4 hours at the Swedo dose of 1g/1kg over 2 consecutive days. Believe me I am a fan of benedryl, just only have the contaminated bottles of dye free in the house right now. But the benedryl cream seems to have quieted things down.

I think I just want to blame anything bizarre on the IVIG I don't think its a contact dermititis because everything has been the same, I keep a very hypo-allergenic home, and it really started on his back which has always been covered outside. I think I'll feed him all the same foods tomorrow and see if he reacts. Otherwise I am going to stick with blaming the IVIG, maybe I'm just angry because it has yet to be helping!

If its helps to know, I understand. We did IVIG on my son 2 weeks ago and we pulled him out of preschool for the remainder of the year. He keeps asking for his friends and the school recital that he was practicing for. I guess I keep telling myself that I am trying to invest in a healthier kindergarten year in the fall. But its still hard to miss these milestones!

Tomorrow my son will be 2 weeks post his first IVIG. This afternoon he started scratching his head and shoulders. I looked and his back was covered with tiny red bumps. He continued scratching and the rash began to slightly spread to his arms and chest. I put Benedryl cream on. Of course we had some of the recalled Benedry and consumed half that bottle and I have not replaced it yet! Then he began complaining of his palms itching. Otherwise he is acting fine and healthy. the immunologist told my husband the rash is not from the IVIG, but I am not convinced. In fact I googled IVIG and rash and it does have some cases of a rash 8-10 days out. At this point he is distracted from itching and not complaining. He has not been outside today and no new foods, so I don't think its allergic. Any have a similar experience? Thanks for any feedback!