pandakid11

My son, age 12, is battling this and nausea is super bad. He has tried anti-nausea meds like zofran but nothing works. He is now on Vistaril, which was supposed to help nausea and anxiety and it is doing nothing. We cannot afford IVIG, plus it would most likely add to the nausea. We are feeling very hopeless. Thanks

HI It seems like for every positive IVIG story, there are tons of bad ones. I don't think IVIG is the answer. Hang in there. Melatonin helps at night, also benadryl. This PANDAS is really rough stuff.

Hi - it did not help us. It is healthy, though. Nothing to lose. You could be one of the lucky ones. Stuff is hard to get down. Taste like camel. : )

Hi Looking for opinion of zoloft for severe anxiety? Anyone having success? Any concerns. Son is 12. thx

He has tried ativan and lorazepam, both didn't help. He is catastrophising everything. Worries about everything including his illness. Vicious loop. It is awful.

Hi What if anything have you found helps anxiety? He cannot stop anxiety no matter how hard he tries. Thanks

Hi My son has chronic nausea and it was recommended that we try Florastor. Anyone have any results on this? Good/Bad? Same with Strep Nosodes? It is supposed to desensitize strep. Good/bad? Thanks

Bumping. Anyone else with herx from oxygen therapies?

Hi I bought liquid oxygen and took normal dose expecting to feel better but got crushed with a massive herx. I am assuming the oxygen killed off a bunch? I just don't quite get how oxygen can make you this much worse? The herx was as bad as my last bout of doxycycline. I just cannot take the herxing. Anyone else experience? I am dealing with lyme and my son has pandas/myco so times are tough.. Thanks

Hi This is an absolute nightmare. He now has converted his anxiety into walking problems and school doesn't want him there with walking issues. He also is somatizing pain. His unconscious seems out of control and I don't know what to do to get it to function properly. His fight or flight is on all the time. He never missed a day of school until this hit last November. His ASO has remained high. Doctors are split. Some think it is PANDAS and then the ones that don't know what PANDAS is, think it is all conversion disorder. It is a mess. He feels like garbage. Don't know what to do. He is so nauseated.

HI I haven't been able to get a straight answer but will puberty finally get rid of this? And, is this a vaccine injury? Are there any sites or references that one can offer? Thanks

This POTS sounds like him. What do you do for it? Thanks

Anyone else having miracle success stories? It sounds great, but so has the other million things we have tried. So desperate. Thanks.

Our son is now having conversion symptoms like not being able to walk. Also, he is in tons of pain. Is this a normal PANDAS reaction? What do you do? So heartbreaking. Thanks

Hi We can get him there. But, he is shaky, cannot walk straight etc...and nurse sends him home due to fear of him falling. They suggested a wheelchair but worried about teasing, etc.

Hi It appears my son's unconscious is knocking him out of going to school. He wants to go consciously but when it comes time, he all of a sudden cannot walk straight, starts shaking, etc...Anyone else experience this and what do you do for it? Thanks

Hi Has anyone tried this for PANDAS symptoms? Would love to know the results. Thanks

Are there any support groups, get-togethers for kids with chronic illness? I have not been able to find any no matter how hard I try. I am sure there are others in this boat, but connecting has been really really hard. Thanks

HI My son is battling not just PANDAS but most likely some other bacteria, like mycoplasma f. He made it to school last week 2 days but none this week. If we move to homeschooling - he doesn't want to, but the school is going to probably insist at some point, what do you do for socialization? He was so isolated last year. I need any and all help. We are hurting emotionally big time over this. He is 12. Thanks

Hi Does anyone have experience with this doctor? Can you give testimonial? Thanks

HI Does anyone know where the best place is to get mycoplasma tested? Any help appreciated. Thanks TIM

Hi My son made it first 2 days and is excited about school. He is so sick of homeschool (he did this from Dec-May last year). He ran out of gas and is shaky and in pain so didn't make it yesterday or today. What do we do? Thanks

What do you use if your son cannot handle zithromax and is allergic to penicillan? Any thoughts? We are worried as school starts Tuesday.

Help! School is starting. We just found out his ASO is still high after 10 months. What abx would you suggest or has worked for you? He is allergic to penn. and cannot tolerate zithro. Is doxycycline ok? It seems to help. Take care.