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KimDeL

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  1. 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
  2. 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.
  3. Hi boychildsmom - How is your son doing as of today? Would you considering IVIG again? KimDel
  4. 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
  5. 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
  6. 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
  7. 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 fr
  8. 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!
  9. 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.
  10. 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
  11. 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.
  12. 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
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