Kimiejoe

DS has had fairly good results with first ivig at NIH. About 70 percent. It's not an overnight prescription though. Takes time and patience awaiting results.

My DS 7 also has thought we call them brain talk. He also says his brain plays videos that show him very scary things. He's has ivig 1x and some of his PANDAS symptoms have gotten better but the brain talk is still there, though not as reoccurring as it was.

Next IVIG in about a week. Should be the real thing this time. How are others in the NIH study doing on IVIG? Has it helped?

Thank you all for the helpful info. Dr said he thinks it's nerve endings and prescribed Aleve for DS. Will post back to see if it helps!

My DS 7 had IVIG about 3 weeks ago. Within the past week or so he has been complaining of pain in his chest. He explains it as a short zapping feeling. He also says he feels like he has trouble breathing. He went to the school nurse today and she called me. Said his oxygen levels were normal and sent him back to class. DS also told me the zaps in his chest happen when he is just sitting at his desk - no physical activity. He has other symptoms of PANDAS that come and go - anxiety, worried about things out of his control, his brain telling him things. The chest pain is a new symptom that really worries me. Has any other parent experienced these pains with their PANDAS child? The whole PANDAS experience is a roller coaster in and of itself. It's overwhelming to deal with at times and to add physical chest pain to it takes the worry to a new level! DS has had EEG and EKG and it all looked normal.

My DS 7 1/2 had mostly auditory hallucinations - his brain would tell him things, mostly negative. Sometimes, however, these were more severe; such as stabbing mom. He knows right from wrong, & is just terrified when he tells me about the "talk". When things with his PANDAS got really bad, he began having visual hallucinations - seeing spider monsters crawl up into the ceiling; seeing friends with their heads off their body. Since he has had IVIG, most of these symptoms have disappeared - except for the occasional brain talk. Yet it hasn't been as bad as it was. I think this behavior is more common than one might think, in PANDAS patients. It's not something you really want to discuss with anyone, as they look at you & your child as if something is drastically wrong with him. My best answer is that I comfort him & let him know I believe in him & what he is telling me.

We went this route contacting Dr k. You can send him an email describing behaviors which he will reply to. For an actual consult it's $500. For ivig it's based on weight about 2k per 10 lbs. The NIH study for ivig and pandas is free.

We went this route contacting Dr k. You can send him an email describing behaviors which he will reply to. For an actual consult it's $500. For ivig it's based on weight about 2k per 10 lbs. The NIH study for ivig and pandas is free.

We went this route contacting Dr k. You can send him an email describing behaviors which he will reply to. For an actual consult it's $500. For ivig it's based on weight about 2k per 10 lbs. The NIH study for ivig and pandas is free.

We went this route contacting Dr k. You can send him an email describing behaviors which he will reply to. For an actual consult it's $500. For ivig it's based on weight about 2k per 10 lbs. The NIH study for ivig and pandas is free.

We went this route contacting Dr k. You can send him an email describing behaviors which he will reply to. For an actual consult it's $500. For ivig it's based on weight about 2k per 10 lbs. The NIH study for ivig and pandas is free.

Thank you for all your support! My DS had symptoms/side effects of getting the real thing (vs the placebo), such as back ache, joint pain in hips, headaches, & vomiting. I know this is a journey, & I am thankful to the NIH for sponsoring this study. I hope that we will see results from the IVIG in my DS as time goes on.

My Ds 7 1/2 yrs just went thru nih study at NIH. First ivig about 2 Weeks ago. He seems better on some behaviors but worse on others. I have read that his symptoMs are normal for others that have gone thru ivig. Trying to wait it out.....he still experiences crying fits, tantrums, brain talk, and some anxiety. He is also on a short fuse as dar as temper. Has anyone else had this reaction with ivig? The waiting ig out is hard when you see your child still suffering. I pray every night for him!