patric

Hi Blake's mom, Thank you for posting about your child's success with the T&A. We are having that done for our ds8 shortly to hopefully prevent some future infections. Did you go thru your regular ped? Ours is not very pandas friendly so not sure he will approve it. Thanks for any info!

Dear mission, There is hope and things can get lots better! My son also had tics and is now pretty much tic free after IVIg. However, I think it is so important to get to a pandas doctor. You will get the treatment he needs which other doctors do not understand. Could you drive to Dr. M in Florida as someone suggested? I agree with LLM that many of the parents who are successful have moved on with their lives and are not on the forum as much. You are doing a great job researching, and I know it all can sound so scary, but there really are treatments that can help dramatically if you find a pandas doctor. Hang in there and we are here for you!

Hi. I can really empathize with you as my son also had debilitating vocal and motor tics which only disappeared with IVIg. It absolutely transformed his and our lives! He no longer tics, has separation anxiety, rages etc. however,the tics were the most debilitating of all of his symptoms. Yes, IVIg is expensive, but for us the benefits far outweighed the risks as he was no longer having the quality of life we had hoped for him. Now he is a happy, outgoing 8 year old boy. We could not have said this just one year ago before the ivig. His tics now only occur mildly after an infection but we are able to treat it and he is back to normal with no tics. I would say he is 95 percent improved! Oh, and we also had many doctors try and dissuade us and scare us about doing the ivig, and we too felt fearful of it. However I knew in my heart that life could be better for my son and our family. It was heartbreaking to watch him struggle with the loud vocal tics and very pronounced motor tics. The ivig was the single best treatment we did for him. It allowed his immune system to "reboot" whereas abx alone stopped being as effective for us. He is now back to his "sunny" personality. I know it is not an easy decision, and I am sure everyone has different opinions and experiences but I felt compelled to write to you and share what worked for us as I saw a lot of similarities. I wish you and your family all the best!

You are making perfect sense as we all understand!! I was tearing up as I read your post. Please keep us posted and my thoughts and prayers are with you and your family! You are finally in the right place with the right doc and forum. For me it finally felt good to surrender and put my trust into my pandas doctor after so many dead ends! One ped even told me my son would die if I did the ivig. Needless to say I left in hysterics! So I understand. We all do!

I also believe there is no set protocol yet on treatments and follow up as we are all pioneers Learning by trial and error and learning from each other and the doctors. Perhaps the kids who come after ours will benefit from our wisdom and the doctors wisdom. Hopefully , in the future when a child is diagnosed he/she will be givens standard protocol to follow. Until then, it is wonderful to have the doctors and this forum to rely on but can make it confusing as well. Wish I had a crystal ball!

We use Sachs B. and kefir Lifeway post ivig. Without probiotics my son will have tummy trouble. I was under the impression from the forum that the kefir lifeway brand is a good choice as it doesn't have the strep. Is this correct? I would love some info. too. He seems to do very well with it. Thanks ! Mini maxwell, I hope you like the Chicago weather we are having! It is never this warm in march!

Hi fixit, I am so sorry to hear of all of your trouble. I can only answer from my own experience which is to get the ivig and pay out of pocket if you have to. I know others may disagree, but it made a world of difference for my son! He no longer tics, or has any other pandas symptoms unless followed by an illness. But that can be treated and is never as bad as before ivig. In my understanding, the younger they are the better, so that is why I would do it sooner than later. It completely transformed my son from having almost constant tics, rage, separation anxiety to where he wouldn't leave our side, to a completely "normal" happy and healthy 8 year old. I feel like I am always posting about this, but it really has made a tremendous improvement and has given us our son and our lives back. I wish you all the best! My thoughts are with you and your family!

Oppositional defiant disorder

Hi meg, I can sympathize with you as this sounds just like my son when he flaired after an illness. We put him on treatment dose of abx ( he also had ivig many months prior) and this cleared it up. Is your child on abx now? You might check into that. I just skimmed your post so not sure if you mentioned how you were treating him for pandas. Hang in there! You are not alone. Many of us experience this with our children.

Hi, My son presented with mostly tics and I really didn't notice any other symptoms until after he was diagnosed and then began to think back about the fact that he had separation anxiety or tantrums. He never had much ocd. I just chalked all of that up to him being a kid . The only thing out of the ordinary (i thought) was the vocal and motor tics.

Hi Katie, My son was misdiagnosed with ts when he really has pandas. I would get a second opinion to be sure it is ts. Pandas is brought on by strep and can cause tics, OCD, and other symptoms. Keep reading this forum to find out more. Best of luck

Hi again, Sorry so brief last time, but I was on way to work. My ds8 had ivig almost a year ago now. I wouldn't say he was constantly debilitated, but had mostly motor and vocal tics, some mild OCD, bed wetting, and separation anxiety. He was diagnosed last spring and our pandas doc highly recommended ivig, so he had it in June. Within a few weeks we saw a huge improvement which kept improving over time. Honestly I feel it was one of the best decisions we ever made as it gave us our son back! He was at 100percent untill he caught pneumonia and then we saw a rage flare, but we treated with abx and he was fine. My husband and I decided that we would not wait until he was severely debilitated to treat him as his quality of life was not all it could be and we are very happy we did the ivig. I would not call it a cure as he still has flares after illness, but it is treatable with abx. He also did not have Lyme or co infections which I think can complicate things, but not sure. Anyway, I know this is a Debatable topic on the forum, and I can only tell about our own experience. I am sure everyone has different experiences or feelings about the subject. Best of luck to you and your family!

Yes, it helped tremendously for us! About 90 percent better! Only has a minor flair after illness. Good luck!

I agree. The fact that your children's tics subsided with abx is telling! I am not sure that happens with Tourette's?

Hi mar, My son was misdiagnosed with ts due to tics when he really had pandas! When he was treated for pandas, the tics disappeared. Best of luck!

It is approaching the one year anniversay of when my son was diagnosed with pandas. As I reflect on our journey, I owe a huge amount of gratitude for the pandas doctors! They are truly in the trenches and willing to help our children in spite of the naysayers in the medical community. In my eyes, they are true heroes! I know that are not perfect and we may not always agree on treatments, but they do step up in the face of a lot of resistance, as we all know just from dealing with some of our own peds. Our family is able to live a relatively normal life thanks to them. I could not have said this just one year ago. I sometimes think about the children in the past who came before ours who had no treatment options or the wrong treatment, and realize how blessed we are! Thank you!

Hi! My son had ivig one year ago when he just turned 8. He wasnt as young as your son, so not sure about that. Maybe some others will post. He is doing fantastic now. Very few pandas symptoms and only after illness. He did experience headaches and nausea for days following treatment. Nothing severe. Good luck!

Hi London, I am not sure if this is an option, but I do think that Dr. K. (a leading pandas specialist here in Chicago) periodically travels to Europe to treat kids there. The day after we saw him, he was heading to Italy to treat 16 kids there. Just a thought as I know it must be tough in your situation. Wishing you the best!

Just read PowPows post. That paper is the one I printed and took along with the others. Please let us know if you have any luck:)

I understand! I brought the white paper, the new info on the NIMH website and a post someone had put on this forum from a Harvard medical doc to my son's ped. Sorry I don't have the links and am running out, but maybe someone will post them . I am not sure they helped, but it made me feel better to walk into the ped's office "armed." I almost felt like telling him, "See, I am not crazy!" It can be an uphill battle. Ugh! Good luck!

Hi again, I agree with tracie. IMHO I would only go to one of the "fab four" (or five) pandas doctors listed on this forum as soon as possible. You can also email or call too a lot of times if traveling is an issue.

Hi Helpmyson, My heart goes out to you as I can hear the panic in your post. My sons tics also got much worse with illness. If you read "very worried" I posted our whole story. There is lots of hope and treatment, but I would get to a pandas doc. You mentioned a referral to a pandas doctor? I would see one recommended by the parents here. Also, you mentioned the strep test was negative? Was it a rapid? Those have always been wrong for us, and even when they culture it, it hasn't always been accurate. My son doesn't sit very still for the swab test. Best of luck. My thoughts are with you. It can get better!

Hi Eljomom, My ds8 started with blinking tics at around age six. We didn't think much of it. At age 7 after a strep infection, he developed motor tics, very exaggerated body movements. At this point we didn't know he had pandas. He was mis diagnosed with tourettes. About a month after the motor tics, the vocal tics and very loud grunts started. A ped neurologist finally diagnoses pandas, but wanted to still treat him as if he had Tourette's with tic meds. We took him to dr K. After reading up on him, and it was the best decision for us. He treated with steroid burst then IVIg following. I wouldn't say it was cleared overnight, but certainly within several weeks, with each day better and better until he was completely tic free! My family think it is like a miracle. He did get sick and have a couple of flair ups, but we treated each and the symptoms cleared up and the tics never did become that evident with the flair ups, it was rage etc. I wouldn't say the ivig was a cure, but has definitely improved his quality of life by about 90 percent. He didnt have lyme or other co-inf. Now He is happy, well adjusted, attends school, and leads a normal eight year old life. This is not something we could have said a year ago. You asked about the tics which I have elaborated on, but he also saw great improvement with separation anxiety ( wouldn't leave the room we were in, and if we did he would throw a huge tantrum unless we told him what room we would be in, how long etc) and improvement with emotional lability. His NE however did not improve but I will take that any day over the other. We are so grateful for finding the right path and dr. I know that others may not have had the same results, but this has worked for us. Does your child present mostly with tics as mine did? Can I ask what has or hasn't worked for you? Best of luck and feel free to ask any other questions. I have received so much warm and wonderful advice on this forum, and am happy to share what worked for us as others have done for me.

Welcome! It sounds like you are on the right track and that is good news that the abx and steroids are working. I can relate to your post. Aside from the tics, mild OCD, separation anxiety and rage, with my son, the thing that bothered me the most was that he lost his sunny disposition and sweet good nature. However , one year later after treatment, he is back!! He is almost 90 percent symptom free! And really he only shows mild symptoms after an illness. So there is lots of hope! Hang in there.

Thank you nicklemama! This info. Is very helpful! I did not know about the Motrin. I will try that if there is a flare. Also, dr K. Told us 14 days too, but my gut said a little longer, so we just took him off of the treatment 500mg bid to once a day dose. I hope this does the trick. Now we are trying to get the probiotics right. We bought the Jarrow sach B. yesterday in 5 billion size. (accidentally left it on counter instead of in fridge, so I hope it didn't go bad). Just not sure how many to give or how often.