DawnMCH

They did not look infected nor did he have any recent positive strep tests. However, you could see that they were full of holes and he would often get those lovely little "tonsil stones" stuck in a hole. (I get those too). We were considering IVIG, but I said I did not want to pay $13,000 for the strep to come back if they were hiding in his tonsils. His cousin had her tonsils out at age 5 and her doctor said they were so cryptic, antibiotics would never have gotten all the strep. They were not cultured however. So, my doctor gave me the name of an ENT who does not always go by the strict standards of x number of strep tests etc.... I am so glad I followed my instincts! Turns out the ENT is interested in PANDAS, said he had one other case where as soon as her tonsils were out, PANDAS was gone. He wants me to email him an update on his PANDAS symptoms in a month. (doctor also has a Ph.D. in neurobiology!). Thanks for the explanations too - I had asked for it to be fully cultured, specifically for strep and HIB, but the ENT said "they'll do all that" - guess not! Thanks - Dawn

Breastfed both of my PANDAS children well into toddlerhood.

Hi, my 12 year old son had his very cryptic tonsils removed last Thursday. He had been on 500 mg. of Zithromax daily for at least 3 months, before that he was on Augmentin daily for several months. During the past three months, especially the week before the operation, he was on additional antibiotics in addition to the Zithromax (Augmentin or Keflex). All of his most recent excacerbations of symptoms did not result in positive strep tests and all of his strep titers were normal. In extended blood work,the only thing that showed up were that he had one low subclass of IgG and had had Epstein-Barr virus at some point. When the doctor removed them, he told me they were worse than they had looked and that they were "full of holes and full of stuff". I had asked for them to be cultured. I received the results today at his post-op visit. He said there was definitely infection and lots of white blood cells. He said they could not be specific to strep or anything b/c there was so much different stuff it was difficult to isolate. Below is what the printout says, and I do not understand what any of it means, including what 4+, 3+, etc... means, So if anyone with a medical background can help me understand this, I'd greatly appreciate it! Smear result: 4+ WBCs 3+ Gram positive cocci in pairs and chains 2+ Gram positive diptheroid-like bacilli Culture: 4+ Mixed anaerobes unable to isolate for identification Thank you! Dawn

The insurance company says they cannot send me a comprehensive list of what is covered for what. They need a diagnosis (ICD) code, which I think for us is 279.3 (unspecified immunity deficiency) But what have people been billed under for a treatment code (CPT?) I find 90780 that is for injections of medicine, but I'm betting there are additional codes for the actual medicines. If anyone who has had insurance even partially cover their IVIG, can you look at your bill (pretty please!) and let me know what diagnosis and treatment codes were used? Thank you so much - I'd really like to do this over the summer and start with a fresh and happy new school year! Dawn in Ohio

I'm looking into alternatives to travelling to Chicago and hoping to be covered by insurance, which would be more likely if I stayed in-state. Has anyone gotten IVIG treatment for PANDAS in Ohio? Can you share? if you want to contact me directly: justinsmama@hotmail.com Thank you so much!

Thank you so much for the referrals - I will look into them. And Ill start another post too. Thanks! -Dawn[ quote name=mama2alex' date='Jun 1 2010, 05:21 PM' post='69732] Here's one more name that was on this forum's list, just in case you hadn't seen it: Glenn J. Trippe, M.D., F.A.A.P. "very interested in learning and treating this.. ....used longterm antibiotic without me even mentioning it.. He is the one who introduced me to PANDAS and told me what it was.. and who is treating my DD at this time." New Beginnings Pediatrics Norwalk, Ohio http://nbpeds.com/glenn-trippe

Thank you SFMom for the info. I am in SHOCK! So for a 90 pound child, I am looking at $13,200, right? How in the world do people come up with this kind of money? I would struggle to find the $500 for the initial consult. I just don't know what I'm going to do. Do they take payment plans or do you need all the money up front? Thanks,Dawn

Hi, Well our beloved pediatrician finally dropped us last week. She said she doesn't feel comfortable experimenting with treatments any more. I am in Ohio and have not been able to find anyone else, except a very expensive D.O. who doesn't take insurance, so it would cost $700 just for her to see my 2 children for a first appt. and she doesn't do IVIG either. So before I spend $700 for a consultation and then Lord knows how much for regular appointments, I'm thinking my money might be better spent just going to Chicago to get IVIG. I know my son, who just turned 12, should be a good candidate - when he was on steroids for a month two different times, he was an entirely different person. It was like living with a Stepford child - it was amazing. He begs me every day for IVIG b/c he wants to feel the way he felt on steroids. Both of my kids are currently on Zithromax prophylactically (Daughter 250 mg. per day, son 500 mg. per day). So here are my questions: How much does Dr. K charge for an initial consult? If he wants to do IVIG, does he do it during the same visit or would we have to travel to Chicago twice? How much does the IVIG cost? Does he submit to insurance? How long would we need to be in Chicago all together so I can figure out hotel and food expenses? Thank you so much! (p.s. I am ColleenRN's sister) -Dawn

We have Anthm also We have a diagnosis other than PANDAS too for insurance: something like Immunological Disorder Not otherwise specified. They only pay for 3 500 mg. or 5 250 mg. per month. It took months to get Augmentin approved. We switch companies March 1 - I'm hoping its better and not worse, we're going broke paying for Zith. out of pocket. -Dawn in Ohio

None here. No meds during pregnancy.

Hi, I'm ColleenRN's sister. I had strep a TON when I was a child. I don't think I had PANDAS, although I did have some unusual anxieties (not touching certain foods, scared of tornados in Virginia where there aren't any!). I continue to get strep as an adult, in fact I was really really sick with it the day I went into labor with my third child (the only one so far who isn't showing PANDAS symptoms but we think is sometimes a carrier as she had asymptomatic strep that caused exacerbation of symptoms in my 2 PANDAS kids) and was on IV antibiotics during delivery and had to wear a mask. My husband and his brother both had their tonsils removed as children. He did suffer from night terrors as a child, not sure if it was PANDAS-related or not. Twice my son, before we new he had PANDAS, had asymptomatic strep that we didn't notice until he got the scarlet fever rash. Looking back at his records, both times were times I had talked to the doctor about the possibility of finally trying ADHD medication b/c he was driving me crazy, but then once he got diagnosed with scarlet fever and took antibiotics, he went back to his "normal". My 9 year old who had a classic OCD onset after a dental cleaning, has only tested positive for strep once, which was 5 months prior to her OCD stuff. I suspect she's had it other times, but that it was missed b/c we went to Urgicare type places and they don't always grow it out for as long as I ask. Her doctor standardly does 72 hours, but they're not open on the weekends or evenings which is, inevitably, when they get the sickest! -Dawn

What about xylitol nose spray? Isn't xylitol supposed to kill strep? I bought some, but my kids balked at it. I also bought them each their own bottle of xylitol mouthwash which I make them gargle with each night. I'm probably not changing toothbrushes often enough though. -Dawn

Dr T.- Just wanted to mention that my then 8 year old daughter started her OCD symptoms which were horrible with many intrusive thoughts soon after a dental cleaning. I am the sister of Colleen (from Virginia) with whom you have had email contact (her 3 or 4 children have PANDAS), 2 of my 3 have PANDAS. What is very interesting to me is that our girls have very similar symptoms (OCD, intrusive thoughts, doubting, bathroom issues) while our boys all have more of the ADHD/ODD type behavioral symptoms. My doctor is trying to contact you (Mary Kay Greenberg) to ask your advice on which tests she should run. My children are on prophylactic antibiotics - was Augmentin, recently Zithromax but insurance won't pay. Thank you, Dawn Chandler-Holtz

I could've written this post! Well, except my daughter wouldn't let me wipe her. She ended up being red and sore from so much wiping, which led to more bathroom avoidance. She is 9 now and it's not an issue, we've moved on to different issues. But she still wipes BMs way more than necessary - we had to get a new toilet b/c she ruined the old one with too much toilet paper. We have a super flusher now! -Dawn

Is a prescription necessary or can a compounding pharmacy make it at a customer's request? Pretty sure my doctor wouldn't go for this, but I'd like to try it. My son is driving me nuts! Thanks, Dawn