mmiglio

I should add the dr is now recommending we add Mepron for a possible parasite and then Diflucan. She already takes Nystatin. how many antifungals can one body handle?

We have not tried ibuprofen. What dosage do you recommend? My daughter only weighs 58#. Never heard of steroid burst. She has intolerances to gluten, dairy, soy, eggs and pineapple, and we've been following that diet for three years. Negative on all metals; negative on nine of 10 lyme. Not sure if we've tested for mold. I'll have to go through the pages again. Which Dr is DC do you recommend? Latimer? I'm going to call her office today since it seems unlikely to get to see drs in Boston anytime soon.

Who are this magical team of doctors and how hard is it to get an appointment?

I am new to PANDAS. My dd11 was diagnosed six weeks ago but I'm not certain she has it. The diagnosis was based on her strep titers by a Dr. at National Integrative Health Associates in Bethesda, MD. In addition to OCD she has ADHD and ODD and was having some GI issues so I was looking for some answers. They did a ton of blood, urine, stool, hair tests and came back with PANDAS. She recommended one month on Augmentin to start, which we did, and OCD/ODD only got worse. On Monday we started Zithro, and today I added (based on the advice of someone here) a low dose inositol. She is also on Nystatin for yeast overgrowth and takes what I think is a good probiotic and a good multivitamin that has Vit D and omegas. Today was one of the worst days ever. I am in Virginia Beach and have an appt with a pediatric neurologist at CHKD, our area children's hospital but not until July 16. She treats PANDAS but I don't see her name on any of these forums so I'm certain she's not one of the "good ones." Until then I feel like we are on our own. She has been going to a CBT psychologist since before her diagnosis back when we thought she might "just" have OCD. But lately her defiance is so bad she won't do her CBT exposure therapy. Our life is basically right now. She has extreme mood swings. She throws things and scratches me. The list of things she is afraid of gets longer every day. She does not have any tics or rituals, however. And her OCD did not come on quickly but gradually. Everything I've read seems like OCD just happens very quickly with PANDAS. She has no urination issues although last year at age 10 she did go through a short phase of wetting the bed. She is somewhat clingy but more that my husband is military and is gone all the time and we have no family in our area so it's usually just she and I. She hasn't had any decline in handwriting or math skills and is in fact in all advanced classes on the honor roll. She says she is afraid of everything all the time and that it is a struggle just to get through the day. Most is related to germs and where germs might be. She won't eat things that have been in the fridge or pantry for very long or that have been opened or left uncovered. I broke a glass recently, and a book she was reading was nearby, and she won't touch it. Tonight she shrieked in fear of a towel I handed her to dry her hair b/c she said it had been hanging there for a while and it has germs on it. She won't use hair rubber bands (she has very long hair) that have been in her drawer for a few months. She is constantly afraid of vomiting and says she would die if it happened. I don't know where else to turn. I feel alone and angry and scared for her. Should I wait it out til July 16 to see our local dr or try to see this amazing team at MGH that I keep reading about or try someone else? Anyone have any ideas or suggestions? I have spent hours and hours reading through these forums trying to find some answers, and I just get more confused and more afraid for her.

So I have a bit of the opposite. My daughter was diagnosed with PANDAS based on her strep titers. She has OCD and ODD but they did not come on rapidly. So can you have PANDAS if you develop OCD slowly over time? We aren't really sure when it started; we just know that a few anxieties she had here and there became full on OCD in January, and now it is much worse. It seems like the list of things she is afraid of or won't do gets longer every day. She did not respond at all to the first month on Augmentin. She is now on day 3 of Zithro with no change. Fingers are still crossed that it helps but at this point we are just pulling our hair out and living a miserable existence. Her defiance is so bad she won't do the CBT anymore that was actually starting to work for her.

My daughter also had to be held down while they drew six vials of blood for the full battery of tests. When it was over she was almost laughing at herself at how ridiculous it was but she is still terrified of needles, and the next time will be just the same. I agree that it's better to just get it done and over with. Not an option. Like wearing a seatbelt. Hang in there. We've all been there.

My dd12 was recently diagnosed with PANDAS and has candida. Took one month Augmentin which made OCD worse. Started Zithro today. Fingers crossed. Also takin Nystatin. She is taking a BioGaia probiotic for kids (she only weighs 58 lbs) but want to know if there is something better I should give her.

My DD 12 just finished a month of augmentin and we had a similar experience. In fact the last four days have been the worst yet. She starts Zithro tomorrow. The dr said some kids respond better to one vs the other. We're really hoping the change works. Not sure how much more of this I can take.

Thank you so much. Yes Zithro is what she wants to move her to. I will do that. And she is already taking inositol but maybe not enough. I'll research more of that. Thank you. Really.

Does anyone know if these Drs have been helpful? This post is old, but I am in Virginia Beach and would love to find a Dr nearby. Thanks.

My daughter, almost 12, was diagnosed with PANDAS. She's had ADHD almost her whole life. Anxiety started a few years ago and began getting worse last year. In January was diagnosed with OCD. Last month we saw a dr at National Integrative Health Associates who ran a ton of tests and her strep titers were very high so we're treating her for PANDAS. After three weeks on Augmentin, we're seeing very little change. After reading Saving Sammy I really thought abx would be a miracle cure even though her onset wasn't very rapid and her symptoms are not as severe as his. Anyway, follow up with dr today, and she says another Dr looked at records and is suggesting a parasite that I can't remember the name of that is very common with PANDAS kids and is suggesting a new drug route. Wants to take her off Augmentin and put on arithrymycn (sp?) and then add Mepron a week later and then diflucan a week later. She is already taking Nystatin for yeast. So my biggest question is, the three new drugs are only once a day, which is good, but I forgot to ask the dr... can she take them all at one time? And does anyone suggest they're better in the am or pm? Should I split them up so she takes one in the am and the others at night, or reverse? She also already takes a multi-vitamin and a mineral supplement since her minerals are low. I hate to put her on new meds b/c her OCD has her terrified of throwing up and new meds, particularly ones that cause die off, tend to make her nauseous, which makes OCD worse. We are doing CBT and are having good success with that treatment, but she still says she is afraid of everything all the time. I just want her to not feel afraid anymore. There is so much info on the web but none of it seems to address my specific question, and I know each child is different and that they call it "practicing" medicine for a reason. I'm just trying to get someone else's advice b/c I feel like my head is spinning. Thanks for listening! Maria