I am looking for a pediatrician who freely prescribes antibiotics. I don't want to hear about how bad antibiotics are and about resistance to them. I know all about that. What I do know is that we are becoming resistant because it is in our food supply more than being overprescribed them. Sometimes you need them. I also know that as a mother, my daughter has been sick for 2 years now and EVERYTIME she is on an antibiotic, she is a different kid. She always has behavior problems when she is sick and doesn't sleep and wets herself. But recently, she started having severe anxiety and OCD issues. She has had several bouts with strep throat and had her tonsils out on May 9, 2012. She has also had the whole immunologist work-up. (You should have seen their faces when she didn't have allergies. I was told it was probably allergies by 7 doctors.) I have been to several doctors and it wasn't until I called a psychologist for her anxiety and OCD that I was told about PANDAS. When I brought it up to her doctor today he lectured me about how I was rewarding bad behavior and that I needed to do a better job disciplining her. He disputed every example I gave him about her anxiety and OCD issues. He is my 3rd pediatrician. No one wants to believe what I'm going through with this. He did agree to test her for strep antibodies but was very reluctant and had an attitude about it. I know by my research that the strep titer test doesn't always show up elevated because it isn't just caused by a current infection, it's also caused by an old one. If it doesn't come back elevated, I need to know if there is another doctor I can go to who will give me the antibiotics I want. I know the difference between a virus and an infection and she has an infection that needs long term antibiotic treatment. There are doctors near me who treat PANDAS but don't take insurance and I don't have $400-500 for the initial visit. There is a psychiatrist at Children's Hospital of Philadelphia who treats it but they only take kids 5yrs and over. She is only 4 and I can't wait a year. I am in South Jersey, very close to Philadelphia but also willing to travel north or south. Thanks for any help.
Doctor who prescribes antibiotics freely
I use Dr. Russel-Brown in Plainfield. While I can't say that he is particularly pro-antibiotic, I can say that when I bring up concerns, he listens to me, takes me seriously, and includes me in decision-making. In a pinch, I called up his office and asked for an RX for antibiotics, and he called in the prescription. I wish you the best in finding the right care provider for your daughter.
Lestat - there is a family in Brigatine that comes up to Marlton every week for speech. His child has Pandas. I can ask him who he sees the next time I see him.
Also, my pediatrician isn't what I'd call free with antibiotics but he is very open minded, very special needs friendly and I'd imagine if he has no knowledge of Pandas, he'd do his research and help you and your child. He's in the process of moving this week but his website is www.kidswellpeds.com. He's moving over to Advocare Greentree in Marlton. His name is Dr. Levey.
Budwana Birth, thanks for the info. When I wrote that post, I was VERY upset. Since then I have found 2 doctors near me who also treat PANDAS, but I will keep Dr. Russel-Brown in mind. We are waiting for the results of strep titers. Hopefully they come up high and I don't have to jump through hoops to find someone who will look further if they don't come up high. All the reading I've done on PANDAS say that the titers don't always come up high and that doctors who know about it but aren't specialists in it will tell you that low titers means they absolutely don't have it. I have been searching different disorders for 2 years to try to find out what could be wrong with my daughter and when I read about PANDAS I felt like they used her for their research. My mom said the same thing. Mind you, this is the mom who often told me I wasn't setting limits and was rewarding bad behavior and told me that she had to "learn" certain things like how to not be so hyper, not be unnaturally attached to me, how to throw things out and give up old toys, and how to not yell out at inappropriate times, among MANY other things. I always argued with my mom that she stopped those behaviors or they got better when she was on an antibiotic.
SpottedFox, thank you for your help. When you find out about the family in Brigantine, please let me know. While I have some doctors in mind, it's always good to know someone who might have experience with them. I used to go to Kressville Pediatrics and liked the doctors but was less impressed with the office staff. They really were trying to help me but didn't know what else to do so I thought a second opinion would be good and I went to Dr. Levey. In the beginning he pulled all of his tricks out of his bag, i.e. specialized bloodwork, stool sample testing for parasites, etc. and when they all came back negative he kind of threw his hands up in the air and from then on anytime I bring her in he acts like I'm overreacting. He actually yelled at her to be quiet once. Knowing what I know now, she can't help it and it was very wrong for him to do so. When I brought up the PANDAS issue he grilled me about who told me about it and then criticized that person as not being qualified--she was the Nurse Practitioner at the psychologist's office I take her to. The last appointment with him was the worst. He was very rude and dismissive. He did order the strep titers but warned me that if they were not off the charts high, it means she doesn't have it. I felt like he ordered it to pacify me and if they come back low he will gloat and if they come back high he will act like nothing happened. After I get the results, I plan on going back to my other pediatrician. Also, I wasn't comfortable with the way he looks in her underwear everytime he examines her. I decided the last visit I was going back to my old ped but when the PANDAS thing came up, i thought he would be more open to it.
I don't have any dr recs, so I'm not sure how you are going to take this. I've been reading about the GAPS diet for my children's food allergies & my digestive issues. I've seen "PANDAs" on the big list I read many, many times. As with everything, there is no one-size-fits-all so I'm not saying that this would be the end of PANDAs for your dd. But, I didn't want to not mention it. GAPS is a food based (& probiotics) approach to healing a large variety of issues. Feel free to PM me if you are interested in links where you can get more information.
Thanks so much for the information. I am familiar with the GAPS diet but since my daughter has NO food allergies I'm not well versed in it. I will check it out in more detail. I've always had digestive problems and probiotics and cow's colostrum has cured me for over 10 years so I am familiar with the digestive element. Thanks again.
Actually, Dr. Nicolaides is one of the doctors I found during my research. I was deciding whether to take her to there or to St. Christopher's Hospital. I just got the strep titers back and they are normal. But, she is on day 5 of an antibiotic for a sinus infection and is like a different kid. Not 100% but much improved. When I say improved I don't only mean her sinus infection symptoms, I mean her OCD, anxiety and behavior issues. Thanks so much for information.
Did you check with Dr. Nicolaides to see if she treats other than strep induced PANDAS/Pans? I thought she only treated if clear sign of strep. We currently treat with Dr. Bouboulis in CT but have also treated with Dr. Latimer in VA and Dr. Trifilletti in New Jersey. Dr. B is in my insurance while the other doctors were out of pocket. I decided we needed an immunlogoist which is why I made the switch from Dr. L to Dr. B.
Within the last year, my daughter also received a Lyme dx and we have been treating that with Dr. Jones in CT. Recently, my daughter's thyroid began acting up and I was thinking of going to St. Christophers and was wondering what you had heard about them.
Thanks for giving me the names of more doctors. I met with Dr. Nicolaides on Wednesday for the first of 3 appointments. She needs specific dates when her OCD started. Since she was almost three and most of the behavior at the time I chalked up to terrible two's or a phase, I've really had to dig deep and look through photo albums, her medical charts and talk to family about anything they remember. She is very detailed. I see her next week with my daughter for the second visit. The only thing about her, she questioned me extensively about her getting chronic infections and almost dismissed me, saying she needed to see an immunologist. I told her she had seen two but that the last test they wanted to do required giving her a vaccination (she is unvaccinated-long story & if anyone is interested in why, let me know and I will explain it) and with her history, I didn't feel comfortable giving it to her. She doesn't really fit the symptoms of what they want to test her for, so I really doubt she has an immune system disorder. Anyway, Dr. N cut me off and expressed surprise when I told her that and then said any immunologist could give her a vaccine and it didn't make sense to her and without knowing what immune system testing she had done, it sounded like an immune system disorder to her. I assured her that extensive testing was done on her immune system and she didn't fit the profile of that. After that she said let's move on and we did but I worry that she will use that as a bias for her diagnosis. I'm not sure what her views are on vaccinations. But, she is a great doctor and I'm glad I finally found her.
I have heard a lot of good things about St. Christopher's Hospital and that's where I'm going next if I don't get anywhere with this. Sometimes I suspect it's just a stubborn sinus infection that hasn't been properly treated and since she has that running through her, she gets every other infection that's out there. She had bronchitis last week and while she was on the z-pac for 7 days she developed an ear infection and is now responding well to the augmentin. But, when she got sick this time she didn't display the classic symptoms of PANDAS like every other time she's been sick since she was 2 1/2, so I was doubting myself. Then, the day after being diagnosed with an ear infection, the symptoms reared their ugly head.
Tell me, what happens when your daughter's thyroid starts acting up? I have been asking to have my daughter's thyroid tested for years and no one, not even the immunologist did it. She is very thin, very active and is a GREAT eater. Thanks and good luck!
I have not noticed any changes with my daughter since her thyroid tests have been coming back. We check her liver/kidney functions, thyroid and do blood counts. It was during a recent blood draw that her thyroid started showing as low. We are currently doing more testing to see if it is due to autoimmune issues.
Have you tested for Mycroplasma, EBV and/or Lyme? You might want to check the latitudes forum for more information. www.latitudes.org under forum and then you can look under PANDAS/Pans tab. It does sound like your daughter has PANS or PANDAS even w/out the titers. Her trigger might be strep or might be something else. Once you have it triggered by one thing, it can be triggered by a host of other things. I am not sure what triggered ours, my daughter did have high strep titers but she also had the varicella vaccine (last vaccine she received) and apparently undiagnosed/treated Lyme also.
Dr. N could believe that an immunologist is needed b/c maybe your daughter's issue is not triggered by strep but by other things. Let me know if you want more info, and you can email me.
Yes, she was tested for Lyme and mycoplasma, both negative. I just had the 2nd of 3 appointments with Dr. N and from the comments she made I think she will determine that my daughter has PANDAS. I go for the last appointment on Tuesday. I will keep you posted. When I heard about PANDAS I was so excited that we would finally find an answer to why she kept getting infections and was acting the way she does but Dr. N said I needed to follow up with her immunologist (she has been seeing one) to find out what was wrong with her. My response was, "What do you mean what's wrong with her? I thought it was PANDAS." She told me that PANDAS is an autoimmune disorder but she probably has an underlying immune system disorder causing all the infections. She had bronchitis 2 weeks ago and was given 7 days of the z-pac and on day 7 woke up with a fever and cough. She was diagnosed with an ear infection. The immunologist wants her to get the pneumovax vaccine to further test her but I have been having a hard time finding it. I was told she can't have the Prevnar.
My daughter tested negative for Lyme twice on the Western Blot but when I tested with Igenix it was positive plus it also determined she had Bartonella and Ehrlichia because we did the co-infection panel. It was expensive (around $700) to get the tests but I have seen more progress since we have actively started treating the Lyme. Each co-infection needed its own antibiotic to treat it. I have heard that if you can't get rid of strep it is most likely Lyme causing it.
My immunologist (Dr. Bouboulis in CT) who advised no more vaccines due to the Pandas/pans issue. We stopped after the second varicella vaccine which was given to her w/in 6 weeks of what started her issues. I am not sure what caused her issues as she had really high strep titers, Lyme and the vaccine issue. Here is his website and there is a link there to a great PANDAS/pans link. http://www.advanced-allergy.com/. I would be very hesitant to give your daughter the Pneumothorax vaccine due to her issues. Good luck at your next appointment w/Dr. N.