Debbie1

Great news peglem! I am looking forward to hearing updates on how she is doing. Were you able to get insurance approval? Looks like we will be approved if we decide to go ahead. We are waiting to see how much benefit our dd gets from a recent antibiotic change to Omnicef.

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Wendy, Can you remind me how old Corsa is? His symptoms were mainly tics and they have resolved with IVIG? Did you see resolution of his tics after the first infusion or did it take more than one to see results? We are considering monthly IVIG for my dd12. Her symptoms are primarily persistent tics that are not currently responding to antibiotics, although she has responded well to both antibiotics and steroids in the past. Thanks, Debbie

We have seen ability to concentrate in school increase dramtically since surgery in my ds8. We just did the surgery a few weeks ago, but the difference was immediately noticeable. The teacher has a sticker system where if you are focusing and have the correct place, you can earn up to 6 stickers a day. Prior to the surgery, my son was getting two or three stickers a day. As soon as he returned to school, he earned six stickers every day. He still has some residual OCD that has not yet improved since the surgery.

Elizabeth, Ask your doctor to culture for all groups of strep rather than just group A. It is just a throat swab. When they send out the culture to the lab, the results will specify which group of strep you have. I was positive for group G strep a few months ago. Debbie

Thanks Peglem. I do have a copy of this. I brought it to Dr. B.'s office last week. It originally looked like we would get approval. Now I'm not so sure we are going to be able to without an immune deficiency diagnosis. I am waiting to hear back from the doctor's office. We are not ready to go ahead with IVIG yet - we are waiting a few more weeks to see whether we get results from an antibiotic change - but wanted to find out if we would be covered if we decide to pursue it.

Has anyone gotten IVIG approval from UHC with a PANDAS diagnosis and no autoimmune deficiency?

Hi bronxmom, Thanks for posting about your progress. How long has he been better now? When is your next infusion? We are considering IVIG with Dr. B. if we do not get enough improvement from antibiotic changes over the next few months. Debbie

Faith, Yes, my children have a history of positive throat cultures (although we think we may have missed some as well) and high titers. In the year that my son's PANDAS first surfaced, he had six positive throat cultures in that year alone. My ENT is in NY. PM me if you want the contact info. We had a great experience with him. Debbie

Hi Faith, We went to the ENT because Dr. L. and Dr. T. both recommended that we get tonsils and adnoids removed. My children have had many, many strep infections over the years, but did not meet any traditional ENT criteria to have the tonsils removed. We have a wonderful ENT who was willing to do whatever the neurologists recommended. His practice has seen many PANDAS patients before. When the ENT looks in the throat, he can see signs of previous infections (strep or otherwise) on the tonsils. Your pediatrician should be able to request bloodwork for Epstein Barr. While you are getting bloodwork, get tested for lyme if you have not already, and I would add mycoplasma pneumonia (sp?) based on recent posts. Debbie

Hi Faith, We had an ENT consult back in November and just recently had t&a surgery. If he has been off antibiotics and your appointment is Tuesday, I would not start him on anything before you go - you can always start after. That way, if the ENT wants to do his own culture, you won't end up with a possible false negative. I would be sure to ask the doctor (as well as any doctor that is doing a culture), to check for all strains of strep - not just group A. We had doctors that were testing for group A only, which often came back negative. When we asked to culture all strains we have had many positive cultures. When we went for the ENT consult, the doctor told us that all three kids had signs of prior infection, but only one of our three children had large tonsils. He would not normally have recommended removal, but he agreed to do whatever the neurologist was recommending, which in our case was to do the surgery on all three. When he actually removed the tonsils, he said they were much larger than they appeared on the exam in his office - most of their tonsil tissue was in the back, which he could not see in his office. In fact, they all had very large tonsils. I am curious about the chronically swollen glands. Is there any bloodwork that can be ordered to try to figure out what is going on? Debbie

GA Mom, Welcome to the forum. I do not want your post to get lost over here. If you click on "New Topic" (upper right of the PANDAS forum), you can post any questions under a new thread. Sorry you find yourself here, but you will get lots of information and wonderful support from a very caring group. Debbie

My daughter had two rounds of steroids in the last year. The first (a high dose for a week then a quick taper) put her symptoms (tics) into complete remission for 6 months. After six months, she started having exacerbations again with strep exposure. She was on prophylactic amox at the time, which perhaps wasn't doing its job at protecting her from strep. Or perhaps the immuno-suppressive properties of the steroid wore off at that point. The second round of steroids was through Dr. L. (a lower dose but one month course). It was less effective. This time the steroids brought her to about 70% improvement but since finishing the steroid, she has had a bumpy road. She continues to struggle with an episode that began in the summer, and although her symptoms are improved, we are not satisfied with where she is right now. She still has extremely elevated titers as well (same as they were before round two of steroids) although the steroids are supposed to help the titers come down more quickly. She had minimal side effects from the steroid (a little weight gain, fullness in cheeks), but nothing major and it gradually went away once stopping the steroid.

Steroids can definitely be hard on the stomach. My daughter (age 12) has had two rounds of steroids in the past year. The first, prescried by a doctor we no longer see, told us to give her Zantac while taking the steroid to protect her stomach. For the second round, prescribed by Dr. L., we were told we do not have to give her the Zantac right away, but if she has stomach pains, we should start it. I am not sure if Zantac and Prilosec work the same way, but if she continues to have stomach issues, you may want to inquire about it. I am sorry I am unable to help with the research part of your question. We have not yet pursued PEX/IVIG (but may if she is not better in the next 3-6 months), but I am sure others will chime in to help you. Dr. L. will probably be very helpful in getting procedures approved by insurance as well.

My three kids recently has tonsillectomies. Two of them have PANDAS. We had no problems with the anesthesia - in our case it did not cause an exacerbation. Several years ago, my daughter had an endoscopy. We had no exacerbation of symptoms with anesthesia then either.

How is Lauren doing?

Hi Isabel, My non-PANDAS son has stomach aches and joint pain. You should run the strep titers, although the pediatrician will probably also run rhuematological bloodwork looking for signs of inflamation. We had tons of bloodwork run on him - all came back normal except for high eosinophols and high strep titers. I wish I could tell you the tests to run, but we had so much blood drawn at once for several different doctors, I don't know which tests were the rheumatology tests. Do test for lyme if you have not already. Your pediatrician will likely know which labs a rheumatologist would want ordered. If I can be of further help, let me know. Debbie

Thanks Eileen and Wendy. It is so hard to say at the moment whether the stomach aches are strep related (ds10 is having a hard time with bad stomach aches the last few days as well). They have taken so much medicine and eaten so little that it is entirely possible that the medicine is irritating the stomach. I do keep trying to get them to eat a little more, but they are so uncomfortable when they try that they just don't want to continue. If I up the antibiotic and it is from the medicine, then the stomach aches will get worse. As long as the eye tics are improving day by day, we will just keep watching it. If she backslides more, we will have to consider changing course. Today is better than yesterday from a tic perspective, so for now I will just watch, stare, hover...and see what tomorrow brings.

Thanks for the reply. It is possible that the t&a released strep into her system, but she was on 7 weeks of augmentin followed by 4 weeks of zithromax before the surgery. The ENT used IV antibiotics during surgery and then she went back to full strength zithromax when she got home. So we did everything possible to avoid that from happening. I called the ENT when she vomitted. He believed it was from the codeine on the empty stomach and told us to switch to regular tylenol until she is able to get some food down. The stomach aches resolved after we switched and she was able to eat again (although throat still very sore from surgery). Before we add another antibiotic to the mix, I would like to give it a few days to see if it improves. I am really hoping that it was just from the missed dose or just a blip in a saw-toothed recovery...she had been on so many antibiotics in the past year I am reluctant at this point to give her more.

We are home from t&a surgery and all three children are slowly recovering (we are about 1 week post surgery). The ENT and hospital staff were great - we are glad we did all three at once, although the impact on PANDAS symptoms remains to be seen. We are not expecting anything immediate - for us it was the longer term goal of getting titers to come down into the normal range and reduce the number of strep infections. My kids continue to be on full strength Zithromax and here is my question - two nights ago my dd missed a dose of Zithromax. She was having terrible stomach aches (most likely due to taking codeine with not much in her stomach). She had vomitted earlier in the day and I did not give the zithromax to her at night, not wanting to make her feel worse. The following day (yesterday), her eye tics were terrible. So bad that she had major difficulty falling asleep at night. Today they are a little better, although I would not say they are good. Could one missed dose cause the increase in symptoms?

Can you take her for an exam before deciding which way to proceed? I did just hear of a PANDAS child who had a full blown strep infection while on the maximum strength of Zithromax. There are Zithromax resistant strains of strep (particularly in the northeast). I guess the question is - if it is strep and she is already on Zithromax, what do you do?

Peglem - I am so glad the time has finally come! Best wishes for a smooth trip and the answers you are looking for. I will be thinking of you. Please post when you return! Debbie

Hi coco, Any chance it could be allergy related? My dd has been on many months of antibiotics as well, and still often has a runny nose. My kids never test positive to skin testing (even though they have had confirmed food allergies), so although negative, we still aren't sure it isn't allergy related. Let me know if you are able to uncover the root of the problem. Gotta run - I have 3 kids recovering from t&a surgery. Debbie