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#1 of 25 Old 07-25-2012, 04:32 PM - Thread Starter
 
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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.

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#2 of 25 Old 07-26-2012, 08:50 AM
 
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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.

 

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#3 of 25 Old 07-26-2012, 12:34 PM
 
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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.  


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#4 of 25 Old 07-27-2012, 09:40 AM - Thread Starter
 
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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. 

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#5 of 25 Old 07-27-2012, 10:51 AM
 
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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.  

 

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#6 of 25 Old 07-29-2012, 10:35 AM - Thread Starter
 
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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.

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#7 of 25 Old 07-30-2012, 09:05 AM
 
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Lestat, I am very shocked at your experience with Dr. Levey.  It really doesn't sound like him.  I'm sorry you had to go through that.   Next time I see the family, I will get the info for you.


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#8 of 25 Old 07-30-2012, 10:17 AM
 
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Take her to see Dr. Catherine Nicholadies in Marlton. She is a developmental pediatrician who specializes in PANDAS. She was featured in an episode of Mystery Diagnosis on the discovery channel. The episode was about a boy in Maine who was having all kinds of strange symptoms and for years nobody could figure out what was wrong with him. She cured him. She was my son's pediatrician years ago- I loved her. She's a little expensive but totally worth it.
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#9 of 25 Old 07-30-2012, 11:00 AM - Thread Starter
 
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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.

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#10 of 25 Old 08-02-2012, 06:33 PM
 
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My thoughts are with you Lesta24. You are a very dedicated mom.

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#11 of 25 Old 08-03-2012, 07:25 AM - Thread Starter
 
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Thanks so much.  Everyone's support means so much to me.  I wanted to let everyone know that I got an appointment with Dr. Nicolaides and feel very confident that I'm in the right place.  I'll keep everyone posted.

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#12 of 25 Old 09-13-2012, 12:15 PM
 
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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.    

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#13 of 25 Old 09-14-2012, 09:54 AM - Thread Starter
 
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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! 

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#14 of 25 Old 09-17-2012, 08:29 AM
 
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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.

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#15 of 25 Old 09-19-2012, 01:14 PM - Thread Starter
 
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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.  

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#16 of 25 Old 09-19-2012, 09:05 PM
 
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Ok I got another doctor recommendation for you. Dr. Anat Feingold is an infectious disease specialist out of Cooper in Camden. She's been voted Top Doc for years- I took my son to see her because he developed a lump in his armpit ( which turned out to just be some fatty tissue) but she investigated this issue more thoroughly than I've ever seen any doctor.
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#17 of 25 Old 09-20-2012, 07:19 AM - Thread Starter
 
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Thanks so much.  I'm thinking of Cooper and St. Christopher's if I decide to switch immunologists but I'll keep this doc in mind as well.

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#18 of 25 Old 09-20-2012, 07:20 AM - Thread Starter
 
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I forgot to ask, is your child fully immunized?  I feel as if I'm being discriminated against by a lot of docs because she's not immunized.  

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#19 of 25 Old 09-20-2012, 12:30 PM
 
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No my two boys (6&7) only got a couple shots and my daughter (1) hasn't had any. I don't remember dr. Nicholadies or dr. Feingold being disagreeable about that. If a doctor ever questions me about the vaccine status of my kids, I always say I'm still doing research so I'm not prepared to move forward with that right this minute ( even though I probably will never give them another shot- the doctor doesn't need to know that). That always seems to drop the subject. I've taken my kids to almost every type of specialist you can think of- allergist, neurologist, endochronologist, you name it- my insurance doesn't require a referral for a specialist so I just take them directly there rather than to the ped first and I can't remember any of them giving me any problems. Just be short and sweet and move the conversation along. Like, "I'm still researching that, but I really need to figure out what's going on with her now before I do anything".
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#20 of 25 Old 09-21-2012, 08:35 AM
 
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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.

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#21 of 25 Old 09-27-2012, 04:16 AM - Thread Starter
 
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Well, I got my diagnosis and she has PANDAS, but Dr. N won't give me antibiotics till she sees something herself.  So her instructions were to wait till she gets sick again, starts to display any OCD behaviors and bring her in and then she'll treat.  She said she couldn't treat with antibiotics just on my word since when she examined her she had been on the z-pac for 7 days and then immediately put on Augmentin and was on her 7th day of that, so wasn't symptomatic.  I have to tell you I am utterly exhausted, physically and mentally by ALL of it!  I'm not sure what she expects to see in a "quick" visit, as she described.  Her OCD is about the color blue, the number 5 and tape and band aids and becoming fixated and not being able to stop doing what she started.  The biggest issue for us is actually getting out the door when she starts with these things.  I usually re-arrange my whole life so I don't have to leave or have to physically remove her so that's she screaming and throwing a fit until she is returned to finish what she started.  That's most likely what she'll see and I'm not sure if that's what Dr. N is looking for.  I am on welfare and receiving food stamps (partly because I can't work with her health issues) and borrowed money to see her.  I haven't paid my mortgage for September because I took her to see Dr. N.  Her office is about 1/2 hour from me and most of the time I didn't know where I was going to get the gas money for the 3 appointments and now she wants me to go again.  Am I going to be charged for that visit as well?  Anyway, she has an appointment with an immunologist at St. Christopher's today and I will keep you posted.

 

In response to the last 2 posts:  It hasn't been my experience that doctors let it go so easy when I tell them she isn't vaccinated.  Even Dr. N looked surprised and asked why and then told me she needed to get the vaccine for further testing.  They basically dismiss me as the crazy mom.  I think if she were fully vaccinated she would be a VERY sick child right now and would fit into what most doctors see with kids today.  No one has made the connection that she NO allergies, NO eczema and NO asthma.  I wish they would do studies on unvaccinated children.  At my visit with the immunologist I am going to say it's against my religion and leave it at that.

 

I have heard of the Ingenix lab and her ped actually used it test for allergies and parasites.  I don't really think it's Lymes since she doesn't display any of those symptoms at all but it's something I will keep in mind for the future.  Thanks for the info and thanks for agreeing that she shouldn't have the vaccine.  Wow, ur doc sounds great.  I wish I lived closer to him.

 

Thanks for all your support.  I will keep you posted.

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#22 of 25 Old 09-27-2012, 11:54 AM
 
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Originally Posted by lestat24 View Post

In response to the last 2 posts:  It hasn't been my experience that doctors let it go so easy when I tell them she isn't vaccinated.  Even Dr. N looked surprised and asked why and then told me she needed to get the vaccine for further testing.  They basically dismiss me as the crazy mom.  I think if she were fully vaccinated she would be a VERY sick child right now and would fit into what most doctors see with kids today.  No one has made the connection that she NO allergies, NO eczema and NO asthma.  I wish they would do studies on unvaccinated children.  At my visit with the immunologist I am going to say it's against my religion and leave it at that.

Just wanted to say I know how you feel about feeling like they think you're crazy for not vax'ing.  I too have children that would be very sick (well, sicker) if they had been vax'd.  My oldest's issues are also related to my not knowing how damaging vax's can be to some.  It stinks that the situation is what it is.  Every treatment has downsides.  Vax's are no different.  Unfortunately, not everyone believes that :-/.

 

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#23 of 25 Old 10-12-2012, 08:11 AM - Thread Starter
 
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Thanks for your non-vax support.  My daughter has had 2 nasal swabs that have come back positive for Hib, the last one recently, so I'm really being bombarded by the docs and now her father to vaccinate.  It just doesn't make sense to me that a child needs to be vaccinated to be healthy.  I thought vaccinations were for diseases, not just overall health.  I have done a lot of research on Hib and the vaccine and I found out most Hib is non-type B and probably caused by the Hib vaccine.  Still, it does make me wonder if she should get the Hib.  It's all overwhelming!

 

As far as what's going on with my daughter, she did see an immunologist at St. Christopher's who was wonderful.  He listened to me and respected what I had to say.  After reading all her medical reports and listening to her history, he said he didn't think she had an immune system disorder.  I started to suspect she didn't either.  With the infections she's been having, if she had an immune system disorder, she would have an immunoglobulin deficiency and she doesn't.  Those are the most common and can be overlooked.  He said with the more serious disorders, she would have been hospitalized or would have required IV antibiotics. After looking at the CT scan of her sinuses he thinks it's a sinus infection she got 2 years ago that wasn't treated properly.  Of course, since he's a doctor he told me that if she'd been vaccinated she wouldn't have gotten the Hib infection in her sinuses in the first place.  He said that with her body constantly fighting a sinus infection, it left her open to all the other infections she's been having.  He explained that while there's a reason for being careful about prescribing antibiotics, there's also a downside to it, especially when it involves the sinuses.  Since she has been 10 days on an antibiotic, 2 weeks off for a year now, the infection has gotten stronger and harder to treat and is likely so packed in her sinuses, it will probably need surgery to get rid of.  He gave her 6 weeks of Augmentin, 2 tsp twice a day.  It has been 16 days and I FINALLY see an improvement in her.  She doesn't have a stuffy or runny nose anymore but she is still getting junk out of her nose that isn't anything I have ever seen before.  I looks milky white with something resembling cigarette ashes in it.  (No one in our home or around her smokes)  He wants to see her every 2 weeks for 8 weeks to monitor her and if she gets another sinus infection, she'll have to have surgery.  

 

As far as the PANDAS goes, I will wait and see what happens.  I think she has a mild case because she isn't vaccinated, I have NEVER let an infection go too long without an antibiotic and as soon as she started to display symptoms, I went for medical treatment, not just psychological treatment.  I have always been a bit of a free spirit and have raised her that way so she has never been a situation where she might be under a lot of stress or where her symptoms would raise a red flag to a school or day care, for instance.  

 

I feel really good about this and hope she doesn't need sinus surgery.  I think if she gets another infection, I'm going to at least give her the Hib and pneumovax.  I also feel confident that if she gets an infection in the future, he would give me the correct antibiotic for the required amount of time. 

 

I will keep everyone posted. 

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#24 of 25 Old 10-14-2012, 12:48 PM
 
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Did you feel like the immunlogist at St. Christophers was open to Pandas or not?  

 

My daughter had issues w/strep in her sinuses. 

 

I hope your daughter does not need the surgery. I am glad that she seems to be making progess.  

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#25 of 25 Old 10-16-2012, 07:40 AM - Thread Starter
 
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The only thing he said was he never met a PANDAS specialist who didn't diagnose it in EVERY patient.  My response was that it was understandable because parents weren't going to travel and pay out of pocket if they didn't think it was legit.  He didn't really say anything.  He later asked again what the reason was I brought her to a PANDAS specialist and took notes when I told him the reason.  We see him again next week and I'm anxious to see what the lab reports and culture show.  That's the bad side of St. Christopher's, you don't get online access to medical records.  I've tried calling medical records several times and never got an answer.  I've decided to wait and see what the doc says and ask for copies of the records.  I'll keep everyone posted.

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