JoyBop

How did you ever make that connection? Both my father and father in law are engineers.

I agree that you should call the office and ask for an explanations. I would be so frustrated as well! Do you have a PCP or other doctor that would be willing to call him as well, like perhaps Dr. B? I hope you get some answers soon to get your son the relief he deserves. Dont give up, and do get a follow up appointment earlier than Sept.

Sorry somehow posted this twice.

Congrats on taking those first steps to overcoming her fears!! I can totally relate. My son is terrified if feathers and most of all chewing gum. Apparently its called chichelephobia and Oprah Winfrey has it too. Some fears can be articulated, but others are just irrational and have no reason or rhyme. I think those are the hardest for families to deal with. You are doing an amazing job!! We started a CBT program with a therapist who has helped many PANDAS patients. They are doing the program called "talking back to OCD " by John March. You can buy it on Amazin and do the program on your own as well if you are not working with anyone. You may find it helpful.

I'm glad he's feeling better! I do believe that if the swelling was from hitting his head that the swelling would be accompanied by bruises. If it was just puffiness I would imagine it was an allergic reaction or autoimmune response. Take pics to show ge doctor in case it goes down. I used to draw a line around the swollen area and had to go to the ER if it increased. One last thing to look out for, which I'm sure isn't the case if its removing with benadryl...but if the skin is red and hot to he touch it could be a sign if infection or cellulitis. You can actually have an infection if the bone and could possibly present that way. But that would be painful, hard, and warm or hot. Allergic reaction would most likely accompany swelling with itching. Just a few thoughts...hope he continues to improve.

1 25 mg tablet? Check your packaging. Your child weighs as much as I do. I'm willing to bet you gave him half the recommended dose. Does the Benadryl hype him up? If not perhaps the proper dosage of Benadryl will also help him get some sleep. How long has it been swollen? Is it itchy? Has he seen a dr yet? The discoloration around the eyes doesn't surprise me as that skin around the eye is so delicate. It can be very painful if the swelling persists. I would take him to the dr if you haven't already. When this used to happen to me I used to get IV Benadryl and it took the swelling down fast. You also want to try to get to the bottom if what's causing it. It could be a med, as you can develops new allergies even to meds you have been in for a long time. It could also be something that he is coming in contact with. If it helps to know I used to get facial swelling due to hashi motos thyroiditis which is an autoimmune Disease. My body attacked its own thyroid hormone. It's not that dissimilar to what occurs in Pandas.

My guess would be that he was banging on it because when you get swelling like that in places where there is not a lot of give it gets very itchy, tingly, and numb. I used to have swelling like that as a teen and it would itch sometimes for days before it was visably swollen. I think if it were a result of banging you would see lots of bruising Is it just puffy swollen? Or are there welts or a rash of any kind.? Did you try the maximum strength of Benadryl for his weight?

The social worker called me back and spent about an hour on the phone with me taking info. Im afraid we wont get in, but it was worth a try. I know the meds arent a big deal because they just have to be 8 weeks out. But I think that they think we have had too much success with antibiotics. I told her most of the OCD and panic attacks gone but we are left with intense motoric hyperactivity, rages, and all around behavioral issues. The social worker is going to present our case to Dr. Swedo on Monay and they will get back to me then. In the meantime, I was going to start ds on Intunive tonight, although now Im not sure I should. Maybe I should wait until I hear back from them so I dont push our chances out farther. Fingers crossed!

Thanks EA!! I just left a message for the social worker. They are still recruiting and will take patients that discontinue meds and CBT.. I hope we get in!!

Sorry for all the typos. I clearly need glasses for the tiny keyboard on my phone

Has anyone here participated in the ongoing NIMH study for PANDAS? I emailed her today hoping at least one of my kids can get in. Can anyone tell me more specifics about the exclusions? My DS started CBT 3weeks ago and went off Prizac 5 weeks ago. He'll be starting intunive tomorrow. The study says no one whis started CBT in the past 8 weeks or had change in meds for at least 8 weeks. Dies that mean he might qualify 8 weeks after he starts a new med or dose?

Nicely done!! Thanks for putting all of that info into one place.

There are a lot of unkowns in this story. They do not make any mention of whether or not this boy has or ever had been treated. I agree with both sides, that this could be a PANDAS case gone totally wrong, and that this child could also have a different psychiatric disorder all together. Either way, I think publicity will help all of us, and drive the point home that we must address this disorder and allow for research, education and treatments. I dont feel threatened that anyone will judge my PANDAS children (or any other children for that matter) on the basis of the diagnosis alone. I thought Dr. T. did a great job of saying he has never seen this type of behavior in all his years of research and working with PANDAS patients. It was therefor, in my opinion, a fairly written article. Perhaps it will send an SOS to our society that we do need to raise awareness and start taking this disease seriously, even if most PANDAS patients never cause a threat to anyone but themselves.

I would call personally and question that bill. That truly doesn't make any sense or sound ethical. I would also request a fee schedule including letters and lab slips. They must have one available to all patients. These are "non covered services" and they have a right to charge whatever they want. But you as the consumer have the right to be aware of these fees and seek care elsewhere if you disagree.

Thanks. I will be sure to let you know how it goes!

Question....I live in a state where the test is not authorized. Can I still have it done if I take my child to another state to see a PANDAS dr?

Now that we are 3 weeks into abx we have seen a great reduction in OCD and panic attacks but motoric hyperactivity, mood swings, rages and poor performance and behavior in school are not improving. He had none if these issues prior to strep in Dec. We are finally ready to try a med to help. it's no surprise that Prozac was a nightmare. All if his symptoms were magnified ten fold and he ultimately became suicidal on it. Our psychiatrist has recommended either Intunive or Clonadine. Has anyone had any luck with either? I think we are more likely going to start on Clonadine because it is much less expensive. I would've to hear what kind of success, side effects, or other experiences your PANDAS pts have experienced.

Thanks for all that info and suggestions. DS is 68 lbs 7 years old and on 500 mg Ceftin BID. I'm told that is the adult dose. He was on Zith back on December when we caught the strep infection but didn't know what was going on and only gave standard treatment. Our doc suspects that it would be resistant to Zith for that reason. I have to look into floraster. So far in giving culturelle full strength in the middle if the day. Clind is definitely off the list and he is allergic to all forms of penicillin and Amox. We are taking him back to a neuro who in not sure will be much use. He doesn't doubt PANDAS but doesn't support long term abx and insists that there is a greater immunologic disorder causing him to be susceptible. I suppose I'll see what he has in mind. He also blew my insurance plea for our of network coverage as he told them an in network doc should suffice. Ill give him one last chance as he has been very kind and answers all my emails within minutes, even while in vacation. If that bombs I'm going to see see Dr. T.

Thanks EAMOM. My daughter would qualify now but my son would not as we won't stop his CBT and he was on Prozac 2 weeks ago. I will hVe to look at what the abx requirements are. Both are currently being treated. It seems that the oy ones who get into the study are those that are not applying the recommended interventions. Or maybe as you are suggesting discontinue in order to be accepted. At this point I don't fe that we are ready for IVIG as there are still less invasive treatments we want to exhaust first.

Thanks for clarifying.

No she wasn't in preventative. In fact we didn't even know she had PANDAS at the time and she was coincidentally treated for a persistent ear infection. First round was Amox. Second was Zithromax. Symptoms subsided but it wasnt til her brother was diagnosed and she relapsed and both tested pos to strep that we caught it. 3 weeks into Amox and she is definitely better. We plan on keeping her on Amox for 6 weeks total.

I apologize if this question has already been beaten to death, but we still don't have a PANDAS dr. Or plan to see one soon as we are still exhausting local options. How long did you all treat initial onset of PANDAS? My DS has been treated now for 20 days. Major OCD and panic attacks have subsided but we are left with intense motoric hyperactivity, rages, and still some quirkiness and irrational fears. We are doing CBT and still seeing a psychiatrist. He is still not "right". How much I'd this will go away with abx? How long do we stay on? If anyone has any BTDT advice please lay it on me. Right now we are not thinking about prevention, just initial treatment. We may deal with prevention later but feel we need to treat the best we can first and see where that leads us. (DS has gut issues and is at risk for c-diff. He is also allergic to several abx so prevention can't be taken lightly) I also want to hear your experiences Re getting back to baseline. Are your kiddos ever the same as they were prePANDAS again? Or are we dealing with a new baseline and need to adjust our expectations?

NickleMama, you say you have post infectious encephalitis as your ICD-9 code. Just curious, do you have any imaging or labs to support that dx? There are no codes specifically for PANDAS so I just wanted to understand what you meant. Did your kiddo hand am elevated SED rate? How do you know he's suffering from encephalitis? Just curious for our own billing issues.

Our practice charges $12 fee for simple forms if requests are seperate from office visits. If forms are very complex they could charge up to $6 per minute. But lab slips are as easy as it gets and $150 is totally unacceptable. Are you sure you weren't being billed for the labs fees themselves? Did they send you the kit along with paid shipping envelope?

That's a great way to look at it! I will appeal out insurance companies decision but doubt it will work. I have to see what it would cost to switch to a PPO plan. I know I would get coverage with that over the HMO we have now. To think we paid $23000 per year not including our high deductible' just makes me mad!'