Tamistwins

Hi sorry I have no experience with this I just wanted to say how sorry I am and hope things get better soon!

Hi Dedee, I'm sorry that you have to go through this yet again. I really empathize with you. My 7 1/2 yr old twins have pandas and now my 19 month does too. I know too well about the rages,odd,ocd and oh the non stop whining and crying. My youngest one refuses to take his medicine. I used to be able to hold his nose but now nothing works and he spits it all out. I see a total decline in his behavior since he stopped taking antibiotics. After speeking to his doctor I have decided to give him antibiotic injection. Its once a month. It's not my ideal way but he needs antibiotic before he gets worse. Just wanted you to know its an option. Does your daughter like taking chewables? perhaps you can try that first. All the best, Tami

Hi Debbie, I'm no expert but my children have had ivig 2x and were supposed to continue every 2 months had the insurance covered it. (sigh) We were never told that any specific bloodwork needed to be drawn before proceeding. Good luck, Tami

How have you been... You are the only one who responded to my post and I wanted to thank you and say hi. Wow reading my post... Things were really bad then. Things are somewhat better now. Not where I would like it though, we have better days but unfortunately when my son is better then I deal with my daughter whining for no apparent reason. I can't catch a break. We did see a Dan doc, gave vancomycin for gut. Did blood work, treating for low cholesterol. All my kids have that. Anyway, really just wanted to see how things were with u and your family.

Thank you for sharing Vickie. My twins are 7 too and have also been diagnosed at 5 even though I realize now that the struggles I had at their younger age was pandas. I am so happy your son is in remission. I pray for that day to come for my children as well as everyone elses.

Thank you for your response...how are your children doing now? what do the llmd say about recovery time? Who can offer some names of doctors in nj area? Thank you

Hi all...i am so frustrated and don't know what to do anymore. My 3 kids are diagnosed with pandas. The two older ones have had documented step very frequently. My little one has had strep 2x before being placed on antibiotics long term. They all have elevated Cunningham scores. My son who presents with the worst symptoms has 186 cam kinase. No dr. Suggested lyme. Pretty classic pandas symptoms. Son began banging head after a stubborn step infection. He has had coinfections too...mycoplasma and ebv. Neg on western blot... One pandas doc told me not to bother with igenex when I asked about it. My question is if anyone can tell me some of lyme symptoms. My son is always complaining he doesn't feel well and I don't know what to do anymore. He has been on antibiotics for so long. He complains his throat and stomache hurt. All night its 4:24 am , he has been waking me all night. He has a humoral immunodeficiency, he has low strep titers. We recently began seeing Scott Smith who is treating the gut and will supplement for some deficiencies. All my kids have low cholesterol. I just don't know where to turn anymore. Any advice?

Hi lisa, My son is also 7 1/2 and we have the same issues. I too would lose it after the millionth time of giving in to his demands. For the most part I learned the way he needs things done or said. It is not easy..i empathize with you. At times it seems like there is no right way to do things and a fuse blows, but for most part if its a routine to say goodnight or leave in morning I feel I need to comply. I tried the other option, yelling, threatening its the last time.... Only makes things worse. They don't mean to be this way...i feel so bad and guilty at same time. Good luck with Dr. B, Tami

Strictly Medicate.

Hi, I am in nj and from my experience psychiatrists no longer give therapy... All they do is medicate. Before I was aware of pandas..I took my son to a psychiatrist for his ocd. It was a 15 minute appointment all he did was write down the history and give a script for ssri. He did say that years ago psychiatrists were there for therapy too but now psychologists give therapy and psychiatrists

Sorry typo....newark, nj

Hi so sorry for your troubles. There is dr. B in ct who does ivig in his office. He is an allergist/immunologist. There is also a dr. Januchhi (sp?) in Newark mk at umdnj. Scott Smith no ivig as of yet but is a Pa in edison, nj works with a Dan doctor neubrander. I hope you get the help you need. Tami

Awesome news... I hope this antibiotic is your miracle! Merry Christmas!

Im so happy to hear that things are going so well for you and your family. Let the healing continue on!

Hi Wilma, I can't relate to your daughters issues but I feel for you...I hope she gets better soon. Have you been to a Pandad expert? How old is your daughter? Have you done blood work to see what type of infection(s) she might have?

Oops didn't mean to post again

Hi my son will ask me something and then say what did you say? I don't think its a memory problem...i think it's more of an ocd ritual he has. He wants me to repeat things to him.

Hi my son will ask me something and then say what did you say? I don't think its a memory problem...i think it's more of an ocd ritual he has. He wants me to repeat things to him.

Thank you colleenrn we are seeing a new Dr on Friday maybe they can do that. Regular pediatrician will think I'm nuts.

I think he had the rash on his leg before we started the 2nd antibiotic. Could it be strep, how do I ask for it to be tested. My other 2 children who have been on zithro had a rise in their aso titers since their last bloodwork.

Hi I was wondering if anyone can tell me what impetigo looks like. My 17 month son was sick over Thanksgiving. Was all congested sounded horrible. We used nebulizer and he was given amox in addition to the zithromax he already takes for pandas. I got back Cunningham scores so now its definite. Anyway now he has a rash on his lower bottom going down his thigh. It looks raised like a hive. Just not sure what Dr would day accept that its viral cause he already is taking antibiotic. He started pinching again and bangs his head in frustration/ anger. It's never ending. Any advice?

How sweet, I pray she gets her wish!

Hi Stephanie, I feel for you and I completely understand. I agm so tired of picking up after the kids just to turn around and see a hurricane 2 seconds later. Struggling to get homework completed and meltdownsns, it its tough. Heres to a needed glass of wine cheers!

Hi j dude, I am so happy that your son is doing well!

Double ditto