TXNinjaMom

Thank you so much for your responses/feedback! I had my intake phone call today with Rogers. He felt pretty certain my son would be recommended for the full day program. I feel much better about it after hearing from you all and asking questions today. My son has been in CBT for 2 years, but nothing is touching this extreme OCD. They said it is about a month waitlist right now....hoping we can hang on that long! Any recommendations on where to stay? Is the area around Rogers safe for me and my son alone? Or should I be looking farther out? Not familiar with Tampa at all.

I am hoping you ladies can help! I am trying to decide whether or not to take my son to Rogers in Tampa for OCD treatment. My son has severe germ/contamination fears....he does not touch anyone/anything, changes clothes often, uses a case of baby wipes every couple of days to wipe his hands, restricts his food, will not sit on furniture and the list goes on. He was officially diagnosed in January, but his symptoms started 18 moths ago. He is not have as many pandas symptoms as he did, but he has not been able to lose the OCD despite months of treatment with antibiotics and antivirals. In fact, the OCD continues to get worse. We are pleading with insurance to get approval for IVIG, but know it could be a while. I just feel like we can't live like this anymore...HE can't live like this. So, my question is the following: Do you think we need to be closer to "baseline" to benefit from the program? Did the doctors truly understand PANDAS and when the kids could be pushed (and when they really couldn't)? I don't mind him being uncomfortable, but I do not want to be worse off than before we entered the program. I guess I'm trying to decide if the program will give him some relief...while we wait for IVIG. Thoughts? Thank you!

My son took Seroquel one time. Per doctor's orders, I gave him 1/4 dose (appx 6 mg) at 8:00pm because "it will make him very sleepy". Haha! He was up until 3:00am wiping and cleaning his room. His OCD is mostly germ/contamination fears. The Seroquel made it 10x worse. I never gave it again! That was our experience....although like everything else, I'm sure it is different for every kid.

My son is on Augmentin ER 1000mg, 2x a day. He has never taken cedifnir, so I can't compare the 2. I worry about the gut issues too, but use probiotics and do the best I can with his diet. He is very limited with food, so this is very hard! Just curious, were you able to get BCBS to pay for your son's IVIG? I am staring to explore IVIG for my son, but am hesitant due to cost.

Hi- I don't have a lot of input for you, but I have taken my son to Dr. Rao for one appointment. He was very nice and extremely knowledgeable about PANDAS. He spent almost an hour talking to me and my son, explaining PANDAS and treatment options. There were a few reasons we decided not to pursue treatment with him at this time: #1- He didn't take our insurance (BCBS), so continued treatment was going to be very expensive. But he does take many others. #2- Office wait times- We waited 1.5 hours after our appt. time to see him. I'm ok with this if it is the exception...unfortunately, I have heard from many other moms that this is actually very common and wait times can extend to 2-3 hours past scheduled appt. time. Many love Dr. R enough to wait...unfortunately, this was a HUGE problem for my PANDA and his germ/contamination fears. #3- Dr. R would not take (or even look at) the blood work my son's pediatrician had ordered 2 weeks prior to our appt. He wanted another full workup done...THAT DAY. My Panda flat out refused to give another 15 tubes of blood with no time to prepare. Having said all that....I am in a FB group with many moms in the DFW Area that absolutely LOVE Dr. R and would wait for hours and hours to see him with no hesitation. Also, is there a reason you have not kept your son on high dose antibiotics since he keeps getting strep? We had the same issue with my son...his was a peri anal rash that kept coming back if we lowered the dose or stopped for even a few days. He has now been on high dose antibiotics for 30 days straight and we have seen the most improvement since he was diagnosed in January. I know that every time mine gets strep (or is exposed by his sister), it is like starting ALL over again. I have talked to another mom whose daughter was also treated by our pedi and she said it took 5 months on high dose before her daughter turned the corner. Sorry, know nothing about IVIG...we haven't gotten that far yet.