KimDeL

My son who is 9 (will be 10 in late July) had a steriod burst last month and we are doing IVIG this coming week. Tics are his biggest problem. The steroid burst - we saw results on the second day, but not with the tics. On the second week after steroid burst, his home room teacher emailed me regarding the decrease in his tics at school, we also noticed it at home. Linda Hi Linda - Is your son having the IVIG done with Dr. K? Tics are my son's biggest problem as well. I've read some information that plasmapheresis is better when tics are the chief issue, and IVIG is better if it's OCD as the major issue. Have you read anything about this? Kim

Does everyone's child who has been diagnosed with PANDAS have the urinary frequency? I have never noticed my son to have that symptom so I am curious.

Hi boychildsmom - How is your son doing as of today? Would you considering IVIG again? KimDel

Hi Worried Dad - Thanks for your reply. I'm sorry to hear the IVIG wasn't successful your first go around but hopefully this next time will give your son much better and last results. I really hope so. Keep calling your insurance company every day and ask for management and get names each time you call. I wish you the best of luck. Please keep us updated. Thanks! KimDeL

greeneyes - good luck with the IVIG - I wish you the best. To your knowledge what exactly is the steroid burst used for? Is it a marker for PANDAS and if your child's symptoms get better your child truly has PANDAS or IVIG will work better? Steroids in general will make so many things better while you're taking them and shortly afterwards so I'm not educated on exactly why the steroids are given for PANDAS. If you know please explain to me. Thank you and again GOOD LUCK. Please let you know how things go. Kim

Hi Colleen - I took my son to his pediatrician on the 18th and he is now on Keflex for 10 days to be followed by Penicillin. I let you know how that goes. Thanks for your reply. Kim

Hi. We've done IVIG for our 7 year old son. It has helped alleviate many of the symptoms PANDAS caused, but has not completely taken care of the problem. We definitely saw improvement (miraculously so at first) and then had an exacerbation a couple months after the first IVIG. I'm glad we did it as it has definitely helped, but I wish I had gone into it with a clearer idea that it was going to give us benefits, not necessarily a complete cure. Our son had TS, tics, OCD, anxiety, ADHD, rages, meltdowns, and all kinds of other PANDAS fall-out. We are only a little less than 4 months out from that first IVIG infusion. So, I'm assured we could still see additional healing. This is just our situation. Other people have said that the IVIG was a cure for them. We consulted with Dr. K, but did not do our IVIG through him. I asked him in our consult whether it was necessary to come to him in Chicago for the procedure and he assured me that it was not. We did basically follow his protocol, but did it here at home with a visiting nurse service. By having it here at home, the bill for that first visit with 25 grams two days in a row was "only" $5500. Our DAN! doctor ordered it. Dr. K has been wonderful about answering my email questions even though we only did the intial phone consult with him. We did receive insurance coverage for the IVIG, but did not mention the term PANDAS to the insurance company. It was called an autoimmune disorder and we sent labs to their nurses for review. Jena - Thank you. I certainly wish the best for you and your son and hope that you continue to see benefits. My son is 11 1/2 and I'm under the understanding that the older the child the less likely for a full recovery but I'm keeping the option open. Best regards. Kim

How many of you have used IVIG for their child's PANDAS? What was the age that your child received IVIG and the outcome? Was your child's main issue tics, OCD or TS? I've read a lot about Dr. K but has anyone had the procedure done by anyone else? Also, is IVIG purely experimental for PANDAS meaning the insurance companies will not cover any of the cost? If so, has anyone had their doctors go to bat for them and get the insurance companies to okay the procedure and cover it? I greatly appreciate any information you can give me. Thank you!

Regards, Buster Buster - Sorry I forgot to say that the Zoloft and Clonadine are being prescribed by my son's pediatric neurologist to see if it could help with tics, some OCD symptoms. So far no luck. I am seriously hoping an antibiotic of some sort will help my son.

Regards, Buster Thanks for your reply Buster. Kawasaski's disease has been ruled out. Your chronology is correct. The azithromycin did not cause any increase in tics when my son was taking it but shortly after taking the Amoxicillin it was like nothing we had ever seen. He has not taken steroids in the past two years - why do you ask, I'm curious? Thanks again. KimDeL

Hi P.Mom - Thanks for your info. No it's not excema, it's only the bottoms of his hands and his pediatrician and pediatric neurologist seem to believe there's a correlation between the peeling and tics.

My 11 year old son has had chronic tics for 2 1/2 years along with occasional vocal tic (sniffing). He currently takes 75 mg. of Zoloft and 1/2 of Clonadine in PM and 3/4 of Clonadine, 3 Fish Oil, Mag./Calcium, Vit. E in AM. PANDAS has been suspected for some time. A little over 2 1/2 years ago his hands and feet peeled, he had slightly elevated titer levels and two weeks later he had rapid onset of neck jerking tic. Over the past 2 1/2 years he has had periods of being tic free (about 2 months) only for the tics to return and new ones added. The past year the tics haven't gone away but at times his hands will peel at which time the tics will get much worse. Three weeks ago he got sick (sore throat, fever). He was on a five day course of antiobiotic (Zithromax). One week after that his hands peels and tics greatly worsened. I took him to his pediatrician, he had no signs of being sick. I took him because his tics were worse, his hands were peeling and we are trying to get to the bottom of whether it's PANDAS related. His pediatrician took a throat culture and it tested positive. Titer level hasn't come back. Because we have been dealing with this so long and different things have been tried we decided to try 10 days of Amoxicillin followed by at least 30 days of twice daily Pennicillin. Within hours after receiving the second dose of Amoxicillin the tics were at the worse in 2 1/2 years and the vocal tic that he hadn't had in months returned. The vocal tic used to be only in the morning but now is constant and happens every 5 to 10 seconds. I waited 4 days and discontinued the Amoxicillin. I will speak with his pediatrician tomorrow when the office opens. My question is has anyone else experienced this? I've read that quite a few people had had good luck with Keflex and Azithromiacin. Please give me your thoughts.