Joshs_Mom

Thanks I will try that and call the insurance company. Never hurts to try. Thank you!!

Hi Josh's mom: I replied to your first post this past weekend. I still stand by what I said before about getting to one of the specialists if you can; even if you need to pay for the visit yourself. If you can verify the diagnosis...and get somewhat of a plan, you could take that information back to your physician who first mentioned PANDAS and collaborate on the follow up care. I know it is easy for me to say, pay over $300 for a visit, but we have dealt with a lot of stuff over the last 5 years and I have really good health insurance, but some of my son's issues have not been covered, as I said in my earlier answer to your first post. Your insurance may not do this, but my insurance will not cover anything related to developmental delay; and if yours is the same, and since your son is 6, you may have some of those issues too since he is in early elementary. That $300 or so visit with one of the big three COULD save you a lot of money in uncovered visits and copays later...trust me. I have not yet seen Dr. K, we are preparing, but this is what I have been doing: I have been securing all old records (you may not have as many since your situation is recent). I have tried to read as many posts on here and info on PANDAS network. Dr. K wanted my ds9 to have antiDNas B titer done as he has never had in the last 5 years, he has only had 3 ASO titers; one elevated and 2 not elevated; so I got the ped to order it and had it drawn. I also have an appt with the neurologist who first told me about PANDAS to let him know what we are doing. Also, after reading all the posts and PANDAS network I am taking my son to see an immunologist this Friday and I found a list on a prior post on what labs to ask for. The immunologist is the only specialty we have not yet seen. I am doing all of this ahead of time before seeing Dr. K so I have everything I need and am doing all this with providers under our insurance and having labs done at our facilities. It should make our visit with Dr. K more complete. Imagine if you do go to see Dr. L and she orders all of this stuff; and then she wants you to come back again for follow up later or a phone consult. It could save you time and money to do a lot of this ahead of time. Can you see the doctor who first told you of PANDAS and ask for some of this testing? Sorry this is so long. But I really think after 5 years of living with this in our family seeing one of the big 3 is the only way to go. My opinion, of course. But, our ped and neurologist believe in PANDAS, but they do not know how to treat it. Plus the neurologist may have drawn our initial ASO titer 5 years ago at the wrong time, I have just now learned. We have not planned on doing the CAM kinase II test, we are not sure about that, I may quickly ask Dr. K his opinion before we go, Dr. K only wanted the antDNas B titer.... Thank you so much for you input. I will do just that. My husband I discussed it and if I didn't get recommendations for another doctor- we feel it is definitely worth the money to see her. So we will stay with her and see where it goes. I am going to call our pediatrician to get blood work done. Thanks so much!!! God bless.

I was given Dr. Latimer but she does not take our insurance. Is there anyone else that someone can recommend in the Maryland, VA DE area? I will travel for a respected/recommended doctor. I am just at a loss of where to go. I want someone who knows about PANDA and won't dismiss it. Thanks!

Greekmomof2 Maryland 2003, Age 6, Male and weighs 50 lbs Brief history: Started in August 2009 with Urinarary Frequency Syndrome. After he began Kindergarten about 2 months later started exhibiting "Confessions" OCD. He tattled on himself about everything he thought or did that was bad. I started my own cognitive therapy with him and it made it milder but it was still horrible. In beginning of november he broke out in hives which was Scarlet Fever from Strep. At this point my doctor gave me information on PANDAS. He went on Amoxicillan for 10 days. He was completely better after 3 days on antibiotics. After the cycle was done, about 4 days after he was done he started the OCD again. We took him and got tested again and he was positive for strep again. Another Keflex was prescribed and he was better again within 3 days. We did a follow up at the 11 day mark and he was still positive. So we concluded he was a carrier. A 21 day cycle of med were prescribed and he was negative for strep. That was about a month and 2 weeks ago. He recently started doing "confessions" again and the urinary frequency has started mildly. No other Diagnosis. PANDAS symptoms; and order of prominence,: OCD "Confessions" Urinary Frequency Syndrome Results of any testing done: i.e. Aso & dnase, strep results : So new to it all. We have had 3 positive strep cultures and one negative (not sure about the culture). Antibiotic use history: Doctor and what protocol they suggested: **(names of docs optional, type of doctor is however, helpful) Other doctors that were helpful and why: Pediatric Group. Dr. Nuygen. He is the pediatrician that brought it to my attention. I am currently looking into getting an appt with a PANDA specialist. Steroid trials and detailed experience: NONE Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. Additional therapies sought: N/A Supplements used: I am going to try Ibuprofren Meds used: N/A Any 'other' pertinent info: (anything else anyone would like to add or have info on.)

Wow so a simple cold or sinus infection could be causing this? sigh... I can't wait to get an appt and blood work up done.

Thank you so much for your quick and VERY helpful responses. Being new to all of this - you all have given me direction and I am starting to feel like I am not alone. I am in tears right now... thank God I found this site. Please keep sending information and I will keep posting. THANK YOU THANK YOU!

Hi. I am a mother of a 6 year old boy that has had a bout with what my doctore believed was Pandas. It started in August 2009 with being diagnosed with Urinary Frequency Syndrome. We were told it would go away and it did after about a month or so. It came back and then it came back with "Confessions". He started obsessing about bad thoughts and things he had done. He had to confess everything. Then once he would tell you - we had to repeat it exactly the way he said it to show him we understood. To the point if we left the word a or the out we would have to start all over again. He broke out in a rash all over his body. Little tiny bumps. I took him to the doctors and my pediatrician brought information he had printed on PANDA. We tested him for strep- he was positive and we started antibiotics. Within two days he was perfect. He was back to his happy smart little self again. After the antibiotics were finished he started showing symptoms again. Immediately we took him to a weekend clinic and had him tested. He was positive again. After that course we went for a follow up and he was still positive but the symptoms were gone again. We found he was a carrier. So 3 weeks of strong antibiotics knocked the infection completely out. That was about 2 months ago. He has recently showed mild (nothing like it got before) and my husband demanded we get a strep test again. It was negative. This was about 1 1/2 weeks ago. My doctor now wants to rule out PANDA. I believe he is wrong. He is completely better after 2-3 days of antibiotics and thereafter for about 1-2 months. He has a sinus infection now and is now starting to mildly begin his confessions. Can he still have a negative strep test and have PANDA? Please help. My baby is tormented and is not himself. I don't know what to do for him. Does anyone know of someone in Maryland that specializes in PANDA and can help. I will travel to PA, DE any neighboring state if anyone has a great recommendation.