Kayanne

I think the theory is that strep is the first "trigger" for this, and then after that it seems any immune response can cause PANDAS symptoms, but not as devasating as strep. http://ajp.psychiatryonline.org/cgi/reprint/155/2/264 From Swedo's paper, "Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases" page 7: The possibility that pathogens other than GABHS can induce neuropsychiatric symptoms is suggested by the presence of non-GABHS-related exacerbations in the children with PANDAS, as has been reported for Sydenham’s chorea (23). It is postulated that GABHS needs to be the initial autoimmunity-inciting event but that subsequent symptom exacerbations can be triggered by viruses, other bacteria, or noninfectious immunologic responses.

http://www.entrepreneur.com/tradejournals/.../169459644.html EAMom usually posts this....very informative.

Will there be a tapering down of the dose? That is very important...but I'm not sure of the guidelines regarding the taper down...for only five days you may not need to do that. Were you using the steroid to diagnose PANDAS--the way Dr. K uses it...or were you trying to bring down your daughter's brain imflammaion? It seems to me that most of the people who have used the 5 day burst as a diagnostic have seen a return back to PANDAS symptoms. However I think the time it takes varies a lot. Dr. Latimer prescribed prednisone for one month for us...and then extended it two weeks after that. Our last dose was on July 18, and our DD has completely returned to her pre-PANDAS baseline and we have not seen a slip at all...in fact when the pred was done, she still had a couple of very minor issues that seem to have improved even after the last dose. She has assured me that our daughter will be okay unless she gets strep again...and she may have some minor flare ups with viral issues. When prednisone is prescribed for other inflammatory issues (asthma, arthritis, rashes) it generally is taken until the symptoms dissapear. Go back and look at many of my posts....there are a lot more details there. Good luck Karen

The Azith. pills only come in 250mg and 500mg size...so unless you are doing liquid, 300mg is a harder dose to come by. You could do 1.5 of the 250mg's though, and that would be 375mg. My 54 pounder is on 250mg/day. we are doing the liquid, which has been a real pain because I have to refill it each 5 days. My pediatrician seemed unaware of the pill option. Thanks! My daughter took liqud azith 100mg/day. From a powder that when reconsitiuted was 200mg/5ml, our pharmacy would split the powder in half...mix one bottle that was good for 10 days, and give me the second bottle with a separate bottle of the correct amount of distilled water that we could mix for the next 10 days. I was only going back every 20 days. It was red and cherry flavored, so if your son has issues with dye...that may not be an option. Now that she is on the liquid pen vk the pharmacy has assured me that they will contine to help me like that. Also, it is a locally owned pharmacy...not one of the big chains. Karen

That is very encouraging. Thank you for sharing that.

Ellen, Pursuing the PEX make a lot of sense to me...It filters out the antibodies that are currently in the blood. It is like starting with a clean slate. I have to admit that my husband and I can't seem to grasp why IVIG helps PANDAS kids if antibodies are the culprit....It must be related to the fact that many of these kids are having immune issues. If somebody can enlighten me, I would greatly appreciate it.

I completely agree with P.Mom and EAmom. I think there are many factors to consider. But the most important is weather you are sure his strep is completely cleared. You said he was on azith for six months...was that a prophylactic dose or full strength? Strep can be in many different places: throat, sinuses, skin, gut, ear, vagina... Theoretically speaking, sometimes the only way to be confident that strep is completely gone, is to see the slow recovery begin to happen (hopefully sooner in your case because of the IVIG). I think it is important to remember, as P.Mom pointed out, that this is autoimmune, and the nasty antibodies will not subside if there is an ongoing strep infection. Azith is believed to have anti-imflammatory and immune-modulating properties, but Dr. Latimer told me that amox is thought to have those too. However, amox and pen cannot reach strep once it enters the cell. In our experience, it was a high dose of clindamycin that cleared it for my PANDAS daughter...prior to that she took OMNICEF, AMOX, and AUGMENTIN combined with RIFAMPIN Dr. Latimer did put my daughter on 100mg daily of Azith for prevention, but as I began to learn more, I became confident that I wanted to put my daughter on pen vk. I too was concerned about the azith resistant strep because I live in Eastern PA, but mostly I was concerned about azith being a broad spectrum antibiotic--when I took it for 10 days for my strep in the spring, I had some minor yeast issues... We saw a rhumatologist who felt very confident that pen has a great track record of being a prophylactic. Genetically speaking, I have an uncle who had RF as a child, and took pen for 20+ years...well into his adulthood without any side effects, and my daughter favors my side of the family. The 2 times daily dosing is problematic....just last night I had to wake her up to give her the pen because we forgot it. Personally, I would rather deal with the dosing issue than be worrying about her being on a broad spectrum indefinately. I was also worried that I would see a slip in her behavior if I switched from azith to pen vk, but Dr. Latimer assureed me that since we addressed her brain issues (steroids) we would not see any. I'm glad to say that she has been on pen vk for a week, without any slip in behavior. Actually the two minor issues that she has had are now gone--I think her confidance took a hit and this last week being back in school...something clicked for her. I'm sure you'll make the best decision for your situation. Good luck Karen

I am just curious if the IVIG that you had with Dr. K would change the results if you did another workup? Shaesmom, do you know if they would? Maybe because you did the procedure already at a higher dose, you've gotten some benefits from it and the immune system might re-set at a different point, and you could do the routine IVIG procedures less frequently. I don't know much about it, but the recommendations that are being made to you right now are based on a blood draw that was prior to the IVIG. Just some random thoughts... Karen

Lots of positive wishes are being sent your way....I'm sorry that your going through this. Did you ever find a good immunologist to help you interpret the test results that you had gotten? It really seems that a lot of children are getting help by tackling this from an immunology front. Also, didn't your daughters test positive for vaginal strep recently? Do you feel the infection has cleared? When you consider that PANDAS is an immune response that attacks neural tissue, then you have to remember that the antibodies take time to subside, and then healing can occur. To top it all off (sigh), you need to try to determine if something about the surgery may be causing this....lots of hugs to you. Karen

I think those 2 days last week are probably significant...From what I have read about IVIG and PEX the improvments are not linear....more like sawtooth....one step forward...two steps back...three steps forward...one step back...another mom on the forum has said to try to look at the weekly trends instead of the daily ones, and I think that is excellent advice. Yours son's brain is trying to heal, and his healing will be as unique as he is. When my daughter was on prednisone, it was so hard to not watch for every little improvement. However, looking back it was definitely more like weekly improvements. Good luck Karen

We're in Allentown, Pennsylvania I live right outside of Reading, PA

Welcome to the forum...I'm sorry that you are here...but as far as advice you are at the right place, I have gotten tons of helpful info here...My daughter is now 100% thanks to all of the helpful responses that I have gotten. Respectfully, I disagree with your doctor...I think strep needs to treated very aggressively. I do really hope that amox is enough to clear your son's infection. Completely clearing the strep is key to managing this. Good luck, ~Karen

I have been wondering about this also.... By the fifth time my dd6 tested positive for strep, the ped had prescribed Clindamycin 300mg 3times a day for 10 days---which is the upper end of an adult dose....she was about 42 lbs at the time. Every culture since has been negative....after the steroid treatment, she is 100% now... In my humble opinion, PANDAS can be managed by: 1--clearing the infection 2--addressing brain inflammtion (eg. steroids, PEX, IVIG, antibiotics that have properties like azith, motrin, or just letting the brain heal on it's own) 3--prophylaxis are necessary The original description of PANDAS was a waxing and waning of symptoms...if there is no waning...I would bet there is still strep somewhere...even with a negative throat culture. Doctors are too squismish about antibiotics---I have so much more to add, but I think I am going to start a new thread

Thank you so much for letting us know how your daughter is doing. What a great inspiration...I read your post to my husband last night, and it was very good for him to hear your success story. Here is that wesite mentioned earlier: http://www.e-pandas.com/ I hope you succeed in getting in touch with other families from the original NIH studies. Please continue to participate in this forum because your experience is invaluable! Thank you!! ~Karen

I should have clarified that I too think a follow up 72 hour culture is needed if the rapid comes back negative...especially since you know she has had exposure to strep...but it is still possible to get a positive rapid strep test if taking prophylactic antibiotics.

Forgive my ignorance....What are K-shots?

I also think a phone call to her would be productive before going to see her. I would also like to add that she is willing to try all three: longer course of prednisone, PEX and IVIG.

duplicate post

Hi Kathy, Yes. That is where we are at right now. The only thing that I am not sure of is immunizations for my PANDAS daughter and other kids....I've always passed on the flu vaccine...but this time I feel that I need to know more about it.... ~Karen

Have you had your throat cultured? If possible, I would take her for a rapid strep test at her doctors...250 mg twice daily is the reccommended dose for prophylaxis--that is probably for an adult. What is her weight? Is she small? My ped said that when you are on a prophlactic antibiotic the rapid strep test would still pick up if there was any strep antigens present. Chances are she is being protected by the erythromycin. When it comes to having an actual strep infection, penicillian and amoxicillin cannot reach intra-cellular strep or strep that has bound with other bacteria...so I wouldn't bother with the pen vk...if anything I would just increase the erythromycin. What antibiotic was your son put on?

Thanks to everyone for weighing in. I appreciate everyone's opinions. We had a phone consult with Dr. Latimer on Wednesday night, and once again I was left feeling so impressed with her compassion and demeanor. She chatted with Rebecca for a few minutes, trying to ascertain how much she remembers, what she still fears, what about going potty still bothers her (which in the last two days we haven't seen any sign of). Rebecca would have talked with her the whole hour---such a change---In June Rebecca could barely get two words out at Dr. Latimer's office. She feels that we should be able to manage another episode with prednisone again, and that we are not even near having to consider IVIG and PEX. I wanted to back her off of the azith, so she prescribed 200mg of pen vk twice daily as prophylaxis. I did tell her that I was a little worried that PANDAS symptoms will start to come back if I stopped the azith, and she said that shouldn't happen because we have addressed the brain inflammation by taking the steroid. We were unsure about who (her or our dd's ped.) we should try to get treatment from if this happens again, and she was very clear in stating that we should contact her and she will treat any future episodes. I asked her about getting the tests that I mentioned in this thread, and she said don't bother with baseline ASO and Anti-dnase. As far as immunological testing was concerned, she said that we don't really need to concern ourselves about it right now. She also said that the more doctors who I take Rebecca to the chances of them sending a report to our dd's ped. that this is not PANDAS is greater. And the big suprise to us was that she said to wait another month, and then get the Cunningham blood done because the numbers will still be effected by the prednisone--Rebecca's last dose of that was on July 18! She did ask if we could get Rebecca's CBT to give early and later assessment reports to her. She also wants us to keep her posted--even if she continues to do well. Thanks again to everyone who participates in this forum. I just hope I can help out as much as you all have!!! ~Karen

Has your daughter ever had IVIG, PEX or taken steroids?

Can oil of oregano be used with antibiotics? In the thread referanced above, FallingApart said that you can't use Olive Leaf Extract with antibiotics so I was wondering if any one knows...the couple of websites that I went to didn't mention it so I'm assuming that you can.

So sorry that you are going through this...I'm praying for your family!

On June 5th, Dr. Latimer told us we would have to postpone giving the steroid to our dd if we wanted to have her blood sent to Cunningham. On Wednesday night (Sept 9) when I asked her about baseline tests. She said that we should wait one more month and then do a blood draw for the study because the steroid was probably still supressing her immune system......her last dose of prednisone was on July 18th! I was very supprised at this, I even asked a question to verify that I understood what she had just said, and again she confirmed that the steroids were probably still acting in her body. Although, we were on prednisone for six weeks, and not the common five day diaganostic burst. Of course I will be worring for the next month...hoping that we don't see a slip, but Dr. Latimer seemed very confident that we could keep this under control by occasionally using steroids and prophylactic antibiotics. I have been reluctant to really get into this thread, because my oldest girl is 81/2 and seems to have a stomach complaint every day....I'm getting worried, but my husband keeps telling me to stop coloring everything as PANDAS....so hard not to do!