Debbie1

Thanks. I do have a call in to the doctor and am waiting to hear back.

We are headed for another round of IVIG next week. My husband had to look up something online regarding our insurance coverage and on the website under IVIG medications it says "Immune globulin can harm your kidneys". I had never heard this - has anyone else? Thanks.

Dedee, I have two children with pandas, both of whom went undiagnosed for several years. When we finally got the pandas diagnosis (and were told that our children are textbook cases), our initial doctors were not very aggressive. We ultimately switched doctors and after trying several different antibiotics and a course of steroids, we opted for IVIG. It has not been a miracle cure for us, but my children have improved tremendously. My son has had 3 rounds, my daughter has had two. They are each scheduled for another round in the coming weeks. I have a lot of anger toward those early docs we saw who either did not correctly diagnose my kids or who diagnosed correctly, but refused to consider IVIG. I really believe it would have saved us much pain and heartache had we done it earlier. I have two other children and if, God forbid, either of them would start to show signs of pandas, I would get them on antibiotics and schedule IVIG as quickly as possible. We have a very long history, and I tried to keep it brief here, but feel free to ask any questions you may have about our experience. Debbie

Recently, we had some extended family members blood tested for strep titers because my two pandas children consistently react when we are around them. Exposure to these relatives have put my children into exacerbations that have lasted for months. Blood test results on these relatives revealed extremely elevated ASOs - some in the 700 and 800 range. Our pandas doctors have told us that they are either carriers or have chronic infections that have not cleared. Their doctors are telling them the numbers are meaningless - they should do nothing since they are asymptomatic. This morning I received an email from a relative which contained the following link. I just don't know how to explain what is happening to my kids any more than I already have - and I am not sure the best way to respond to this one. Any suggestions??? http://www.entman.com/AskDrSpectorStrepCarrier.html

We recently had some of our extended family members tested because my children consistently react when around them. Everyone cultured negative and but several family members had extremely high ASO titers in the 700 and 800 range. They are completely asymptomatic. We showed the results to two doctors - 1 neurologist and 1 immunologist who both felt that they are either strep carriers or have a chronic strep infection that has not been cleared.

For those of you who have done multiple IVIGs, are there any blood tests that you do periodically (for ex - IgA levels) to make sure numbers are normal? My kids are going for bloodwork next week and before we proceed with any additional IVIG, I want to make sure we have checked anything that needs to be checked. Thanks.

rjayne, Thank you so much for sharing what you have found helpful. I am going to take your information to our doctor. We have found IVIG to be helpful, but have needed to repeat it a few times and I am concerned about potentially needing it repetitively over the long term. Have you been told of any short or long term risks associated with repetitive high dose IVIG? dcmom - please keep us posted on your progress with the autoimmune doc. Was the dr initially familiar with pandas or did you need to educate him/her? I saw a local rheumatologist at one point who was not helpful. Does anyone know of rheumatologists who are pandas friendly? Thanks.

dd13 is five months post IVIG #2. She is doing much better when she is well - about 80% improved - but still slips significantly when she is sick. She has battled cold after cold this winter and strep is rampant at her school. Our doctor feels that a third IVIG will help her get into the 90% improved range and help her not slip so much when she is sick. She is not immune deficient, but did fail her strep pneumo titers when tested. We are confident that we have ruled out lyme and she does not currently have a mycoplasma infection. I am nervous about repetitive HD IVIG. Can anyone tell me what the risks are? I have heard of increased risk of allergic reaction. Does anyone know how that is dealt with? Any other risks I should be aware of besides the fact that it is a donor blood product? How often is it safe to repeat at a high dose (1.5g/kg)? I have also heard that HD IVIG is used in other autoimmune disorders. Can anyone tell me what those disorders are, the dose used and the frequency of infusions?

I did not see her, but I have a friend whose pandas son was treated by Dr. Schulman for a period of time. I will try to pm you later with more details.

Joan, I am so sorry you are having such a rough time. When was the second IVIG done and how did he do between #2 and #3? My son is 6.5 weeks past IVIG #3 and is doing well now, but the first month was rough. Prior to IVIG #3 he had a month long sinus infection, which set off his symptoms. His strep and mycoplasma titers were up just prior to IVIG and I think that made the post IVIG experience worse for him. It took a month, but his symptoms did calm down. He is doing much better now. Hoping things calm down for you quickly.

I thoroughly enjoyed watching this video. Thanks so much for posting.

dcmom, My pandas daughter (13) is an avid reader. She has not asked to read the book, but to be honest, I have shielded her from it. I don't think my daughter realizes how bad her symptoms were at their worst and to a great extent, I would like to keep it that way. My daughter's symptoms were nothing like Sammy's (although ds9's pandas experience was more similar) and I wonder if reading about what pandas did to Sammy may scare her into thinking that it could happen to her too. Beth's emotions as the mom of a pandas child are expressed as well and I am not sure I would want her to realize how difficult it has been on us. I have let her watch clips of Lauren J. on the Today Show. My daughter had tics without OCD and I felt it was good for her to see another girl her age who was going through something similar and got better. That being said, T.Mom's reply is thought provoking and making me rethink my position. Maybe I am being too overprotective.

dd13 is almost four months post IVIG #2. She has had slow but steady improvement over the last several months and lately has been doing extremely well. A few days ago, we received her latest titer results. For the first time in two years, both her ASO and antiDNAse B fell below 300. Last week, she had an interview at a high school we are considering for her. The interview was rigorous and intense, but throughout the whole experience, she did not tic once. Both my husband and I were in the room when she was being interviewed and neither of us saw any sign of pandas. Our journey has forced us to focus on important things in life and this was one more opportunity. I came out of the interview knowing that it makes no difference whether or not my daughter is accepted to this school. The only thing that matters is that her body seems to be recovering, and for that we are truly grateful. We hope it stays.

Mary, Thanks for the reply. How is your daughter doing now? Yesterday and today were noticeably better for my son. Maybe we are turning the corner. Debbie

When you walk into your child's room, notice that it is a mess, and you are so proud of him. When you have become so insistent on frequent hand washing to prevent the germs that caused pandas that you are not sure if you are helping your child's OCD or making it worse. When you walk into your local pharmacy to get your latest refill of abx and the pharmacist tells you he would rather sell you greeting cards. (This one happened to me just the other day)

Wendy, Thanks for the tips. He was tested for lyme and was negative. Immune complexes were in the normal range. The only things that did come up on bloodwork were a new mycoplasma infection and elevated strep titers again. He was switched from augmentin to azith to treat the mycoplasma. He stayed on the azith for 5 weeks. We switched him back to augmentin last week because we have azith resistant strains of strep here. Debbie

I know every kid is different, but I do want to get a sense of what others have experienced. For those of you who have had exacerbations post IVIG, how long did they last before symptoms started to calm down? ds9 is 4.5 weeks post IVIG # 3 and we have not had this severe of an excaerbation before. Previously, by the 3 week mark, there was noticeable improvement. This time his behaviors clearly intensified post IVIG and he developed two tics that he never had before. I am waiting for things to calm down, but it is tough to watch. We know he had a mycoplasma infection before IVIG and his strep titers were very high again (antiDNAse of 1360). I don't know if that is why our experience this time around has been rougher. Any thoughts?

momto2pandas, I am so happy for you that your kids are doing so well. Are you doing high dose every 3-4 weeks or low dose? Debbie

Thank you for the responses. My son is not immune deficient and I am wondering whether those with immune deficiencies respond differently to IVIG than those without. My son's IgA was normal pre-IVIG #1. We have not yet retested nor have we tested his anti-IgA yet but we probably will in the next several weeks. Elizabeth - I had not heard of combining omnicef and azith to treat mycoplasma, but I will bring it up with the doctor. My son was on augmentin when he contracted the mycoplasma infection. We switched him to azith at that point which he stayed on for 5 weeks. We switched him back to augmentin yesterday. I hope that was sufficient to treat the myco p. It was a relatively new infection. He was tested for it a several months ago and was negative. We think he picked it up in August. Fixit - You may be right that he just needs more time this time around...I certainly hope so. With previous rounds, we already saw improvment at this point and that is what is concerning me. Nevergiveup - Is your dd immune deficient?

It has been a long time since I posted and I am hesitant to post an update, but here its is: DD13 is 3.5 months post IVIG #2 and doing very well. She has some very mild tics remaining and we are waiting and watching her progress, but so far we are very happy with what we see. DS9 has had a harder time. He had both tics and OCD pre-IVIG and responded well to two rounds of HD IVIG. After round two, I would say his symptoms were 85-90% improved. 1 month after IVIG #2, he came down with a sinus infection that took over a month to clear. Three weeks into the infection, several behaviors returned and did not go away when the infection was cleared. We decided to pursue IVIG #3 to get him back to where he was. Blood tests results received right before IVIG showed he had a mycoplasma infection and his strep titers were high again as well. He was switched from augmentin to zithromax to address the mycoplasma. We are now 3.5 weeks post IVIG #3 and he is not doing well. Still lots of OCD, some more intense than before and he developed a neck tic post IVIG as well. We just switched him back to augmentin today after 5 weeks on zithromax. He seems to have done better over time on the augmentin and we have zithromax resistant strains of strep in our area. I recently met with one of our doctors to discuss the safety of repetitive use of HD IVIG. He said that repetitive IVIG increases the risk of allergic reaction. In addition, your body can start to produce anti-IgA antibodies which can then make IVIG less or not effective. He recommended measuring IgA and anti-IgA antibodies before considering any more IVIG. According to the doctor, falling IgA and high antibodies would suggest that you should not pursue further IVIG. Has anyone measured these? What were the results? Has anyone found that with repetitive IVIG you get diminishing returns? What options are left if IVIG doesn't work anymore? I am not trying to be alarmist, but felt it was important to post the questions. Any guidance is appreciated.

Anyone experience problems with getting braces?

Thanks for the replies. Wishing everyone their own "mess" to enjoy!

My son, age 8, is 2 weeks post IVIG # 2 and doing very well. He shares a room with his older brother, and ds8's side of the room is always MUCH NEATER than his bother's side, which I always attributed to his OCD. Well, the other day I walked into the room and both sides were a mess! I immediately turned to my husband and said, "This room is a mess!!....Maybe I should be proud of him?!"

Thanks!

dd13 is on 300mg of Omnicef twice a day. Does anyone know if it has to be taken with food? Thanks!