Debbie1

Thanks for the replies, Wendy and EAMom. He really is not feeling sick and doesn't look sick. He is not congested and the doctor said his throat did not look red. He complained of headache and stomach ache this morning, but when he came home from school he said he felt fine all day. He said he has not had a headache since this morning. He does continue to complain of stomach ache and has for the last several weeks. We did find that dairy is big offender for him and that some of his stomach aches have been OCD/anxiety related (afraid we are going to have a fire in the house). However, when he complained of both stomach ache and headache this morning, together with his recent ramp in symptoms, I got worried. We went for the throat culture as a precautionary measure. I was glad the rapid was negative, but was wondering if the 72 hour came back positive, would it have been wrong to do IVIG. I suppose even if the cultures came back negative, any of our kids could have strep hiding out in their bodies somewhere - hence rising titers (in some) without a positive culture. Isn't that is one of the reasons people do IVIG??

We are scheduled for IVIG tomorrow and Thursday. ds8's OCD has ramped up a little in the last few days and this morning he was complaining of headache and stomach ache. He is currently on full strength zith, but it doesn't seem to work as well as Augmentin and Omnicef did for him (not that he was perfect while on either of those, but somewhat better). I just took him to the doctor for a throat culture. The rapid was negative. They are sending a second culture out to the lab, but won't have the results for a few days. His sister is sick with a cold and very congested so maybe it is just the exposure to her that is causing symptoms. I spoke to his teacher at school and she is not aware of any strep recently in the classroom. My question is: if there actually is an active strep infection going on, is it ok to do IVIG? (maybe an ignorant question, but I am just not sure). Thanks, Debbie

Thank you to all of those who replied. I am so grateful to have a wonderful support group here. Debbie

It's been a while since I've posted, but here is our update - DS8, although much better than he was when we first learned about PANDAS a year and a half ago, still has some degree of OCD and continues to flair when around others with strep. We had t&a done in December and his strep titers have doubled since. Steroid burst helped but results were short lived. So we have decided to move forward with IVIG and thankfully, our insurance is covering. We are on the schedule for next week. I am happy that we have decided to move forward, hopeful that it will help with the remaining symptoms, but nervous - unsure what we would do if it does not help. DH has high strep titers - was treated once for a month and then again for 10 days when he was positive for strep. Has anyone else dealt with high titers in another family member post IVIG? How did you handle it? Any advice is much appreciated! Debbie

Lynn, We have been seeing Dr. B. since November 2009 and he has not jumped straight to IVIG with us. We have spent several months on antibiotics and did a 2 week steroid burst as well. We are now considering IVIG because although my son has improved significantly with antibiotics, he still has some OCD that has not gone away. We saw significant improvement on the steroid, which was primarily used for diagnostic purposes, but as soon as we stopped the steroid, symptoms returned. Dr. B. is wonderful. I have only the best things to say about him. Best of luck with your appointment. Debbie

We have had no problems filling prescriptions locally from our out of state doctors. We have had several prescriptions for antibiotics and three prescriptions for steroids over the last 1 1/2 years. However, we do travel to see the doctors - the prescriptions are not written as a result of phone consults.

We had the whole family's titers run several months ago. We had been tracking titers on our children for many months and knew they were high, but then dh and I got tested. I was normal. Dh had ASO of 290 and antiDNAseB of 960. He also tested positive for group B strep (make sure to request testing on all strains!!) and I tested positive for group G. Dh went on a month of Zithromax and the kids were all on antibiotics for a few months (PANDAS kids are still on). Repeat culture for strep was negative, but dh's titers did not go down. Then he tested positive for strep B again just days before my 3 kids had t&a surgery. He went on a 10 day course of a different antibiotic (can't remember the name, he is allergic to penicillin). Repeat culture was negative, but titers are still high. We see some of the doctors mentioned frequently on this borad and they do not want to treat dh with further antibiotics at this time since his cultures have recently been negative. 2 out of my three kids have had rising titers despite recent t&a and months of antibiotics.

Thanks for the reply, Wendy, it was helpful. A follow up question for everyone: Following IVIG, will PANDAS symptoms continue to mildly flair when the kids are around strep or is that reaction expected to go away completely?

mom md, Thanks for the reply. I just want to clarify - do you plan on keeping him on full strength antibiotics until he is an adult or are you using a prophylactic dose?

Hi everyone. Its been a while since I posted so I will give a brief recap for those who are unfamiliar with our story and a quick update: We have two children with textbook cases of PANDAS: dd12 had a positive response to steroids and antibiotics and was 100% symptom free for many months until multiple strep exposures last summer. A second round of steroids in October 2009 was less effective although the dosing was different than round 1 of steroids, and we tried augmentin and zithromax with minimal improvement. We eventually took her to an immunologist, and she tested positive for lyme (recent infection). We did t&a surgery in December and switched her antibiotic to Omnicef in the beginning of February. Since the recent antibiotic change, she has been doing very well. She is not symptom free, but symptoms are minimal. She did have a bit of an uptick in symptoms in the last 24 hours, and this morning my PANDAS son tested positive for strep. ds8 had a positive response to antibiotics alone and was doing great until a strep exposure in August 2009 caused his symptoms to flare a bit. We switched antibiotics to augmentin with some but not full improvement, followed by zithromax, and back to augmentin. He had t&a surgery in December, but has had some residual OCD that had not gone away and has increased a bit lately. We retested his titers and they have doubled since the surgery. We recently tried a steroid burst and we saw significant improvement immediately. However, as soon as we stopped the steroid, symptoms returned. During the steroid burst he got a stomach virus and he has had stomach aches for the last month probably due to the prednisone, virus and augmentin combination. Because of the stomach aches, the doctor told us to stop all antibiotics one week ago until he feels better, then switch to Omnicef. Of course strep is going around his classroom and he tested positive on a rapid this morning. The good news is that his symptoms have not worsened at all, probably due to the immunosuppressive effects of the prednisone. We are watching him closely. While the kids are doing relatively well, they are being managed, but not cured. We continue to experience bouts of ups and downs. Neither is 100% symptom free and we are considering IVIG. So for those of you who have done IVIG: 1) At what point did you decide to go ahead with the procedure? 2) Does a child need to be in the middle of a crisis to warrant IVIG or is it enough that they have residual symptoms and periods of ups and downs? 3) Was your improvement post-IVIG immediate, or did it take some time? 4) How long do you plan to keep your child on antibiotics after IVIG? As always, thank you to everyone for all of the guidance and support. Debbie

Hi Colleen, I am sorry you are going through a hard time. We have been tracking titers regularly and although many people don't put much weight in them, they seem to strongly correlate with my PANDAS children's symptoms so for us they are valuable. My non PANDAS son is the one whose DNAse went from 960 to 1360. He had joint pain and stomach aches with are essentially gone since starting zithromax, doing t&a surgery, and some dietary changes, so we just took him off of zithromax as of last Tuesday. My PANDAS son is the one whose results went from 680 to 1360. He started a steroid burst the day after the blood draw before we got the results. His tics and OCD were significantly better on the steroid, but as soon as we stopped, the symptoms returned. Unfortuantely, he got a stomach virus while on the steroid which combined has resulted in some lingering GI pain. As of last Tuesday, we temporarily stopped all antibiotics. He was on augmentin, prior use of zithromax had minimal effect on him. His stomach aches are now improving. We are waiting until his stomach aches are fully better and then are switching him to Omnicef. We are considering IVIG if antibiotic treatment fails to fully eradicate symptoms. In the meantime, I am terrified that he is in school without the protection of antibiotics. On Friday I got a call from his teachers telling me that two kids in the class are out with strep. So far he is ok, but I am nervous and closely watching. By the way, my two PANDAS children were orignially on amox for many months and doing great until some heavy strep exposure caused both to have PANDAS flares. Doctors we saw at the time felt they probably developed some resistance to amox and switched them to augmentin followed by zithromax. You may want to consider an antibiotic switch. Debbie

Omnicef has been working wonders for my PANDAS daughter who tested positive for lyme. She was on augmentin and zithromax prior to Omnicef with minimal improvement. We are negative for mycoplasma.

Hi Deanna, Two of my three kids also had a rise in antiDNAse on their most recent bloodwork. One went from 960 to 1360. The other went from 680 to 1360. Both kids have been on antibiotics for months - one on zithromax, the other on augmentin. The recent lab was done about 6 weeks post t&a surgery. The prior lab was done a few weeks before surgery. I was thoroughly confused by the result, but it did explain why my PANDAS son was not doing so well (the other child is not PANDAS). One of the doctors we see theorized that we are dealing with resilient strains of strep. I am interested in seeing if anyone else has an explanation. Debbie

Our intent with the steroid burst was primarily diagnostic to determine whether he would be a good candidate for IVIG. If he had longer term improvement after the burst, that would be a bonus. Our experience though, after having used steroids for our other PANDAS child, was that the results were temporary and symptoms eventually returned.

Thank you for the replies. Kari - It is reassuring to hear that even a child who had no response to the steroids responded positively to IVIG. Thanks for posting.

I would be very careful about doing a burst given the stories some have posted. We had a positive experience with steroids, but we also had a very clear cut PANDAS case. If I were in your shoes and unsure of which way to go, I would have the bloodwork done and then do the longer course of antibiotics. You can see where how far that gets you and can always do the burst at a later date.

My son just finished a two week steroid burst (1 week at full dose, 1 week taper). We saw definite improvement - better concentration, very little if any repeating of phrases, decrease in neck tic, some decrease in symmetrical touching. He is better than he was, but not all better...maybe 50%. My questions are... 1) Is 50% improvement enough to consider the steroid burst a success and be indicative that IVIG would help? Or does he need to get more of an 80-90% improvement to warrant IVIG? 2) His improvement declined on the last day of the burst when we were down to only 10mg. Maybe it was just a bad day, I don't know, but has anyone else experienced that quick of a decline? Thanks.

So glad to hear your update and hope that Shae continues to do well!

dh just had his titers retested. He was recently positive for group B strep (negative for group A), took a round of antibiotics and went to get recultured a few weeks later. The cultures came back negative, but his titers, which were high when tested a few months ago, are even higher now. If the titers rose, does this mean he had group A strep recently but cultured negative? Have any of you had rising titers as parents of PANDAS children and what did you do?

I have a friend with a child who was diagnosed with PANDAS three years ago. He had two rounds of IVIG and has not had a relapse since. He has been symptom free for three years now. He remains on prophylactic antibiotics.

My dd12 has had two rounds of steroids. Round 1 - 60mg for 7 days then a taper - was extremely effective and put her into 100% remission for 6 months. Round 2 - 30 mg week 1, 20mg week 2, 10 mg week 3, 10 every other day week 4 - was less effective. We got to about 70% improved by the end of the month, but then the improvement was not sustainable. We tried augmentin, zithromax, and now omnicef and did t&a surgery. She seems to be improving somewhat on the omnicef, but we are not back to 100% and are considering IVIG for her. We have also discussed an antibiotic combo, which does not thrill me, and IV antibiotics with our treating docs as options. We are giving the omnicef a little more time and then will decide our next step. Here are my questions for you: 1) Is the steroid you are using the same dose as round one and for the same duration? 2) Did she have a growth spurt that would require a higher dose? 3) Have you done bloodwork to rule out another infection such as lyme, mycoplasma, etc. (dd recently tested positive for lyme, although we are repeating the test to see whether we get the same result and are doing bloodwork this coming week to test for mycoplasma). These other infections can exacerbate symptoms and make them harder to eradicate. By the way, steroids are contraindicated in lyme. Just adding one more thing - when I asked one of our docs why we did not get the same response to round 2 of steroids, I was told there could be many reasons including the strain she was exposed to. I'm sorry you are going through such a hard time. We all understand how difficult it is.

Thanks everyone for the replies. We are doing a 5 day burst, primarily to determine whether IVIG would be effective for him. My ds8 has responsed amazingly to antibiotic treatment all along, but has some residual OCD that has not gone away and at times seems to increase a bit. We had gotten two differing opinions on the steroid dose from the docs - one said 40 mg, one said 30mg. dd12 responded beautifully to round 1 of steroids (put her into complete remission for 6 months). On the second round, which was dosed differently, she showed marked improvement, more like 70%, but it was not sustainable after stopping the steroids. dut- can I ask who was the prescribing doctor for the 60mg? dd12's first round of steroids was 60mg for 7 days and then a taper. It was pescribed by a doctor that we no longer see. It worked wonders for her, but several consults later, we were consistently told that 60mg was too high a dose for her - she was about 85 lbs at the time.

Hi coco, I am confused as to why IVIG has not lowered the titers. Its a bit concerning to me because my children all have high titers which have come down tremendously but never into the normal range. We are still having symptoms, although milder than when titers were higher. We are currently considering IVIG for at least one of our children, but I was under the impression that IVIG will bring the titers into the normal range. Is that incorrect? Debbie

Can anyone tell me the appropriate steroid dose for a 50lb child?

We have not yet done IVIG, but are considering it for our 12 year old daughter through Dr. B. Just wanted to wish you best of luck and much success. I hope to be hearing very positive updates! By the way, I remember from a previous post that you were considering plasmapheresis followed up with IVIG. What happened with that? Debbie