post-op appointment with ENT (two weeks after T&A)

[colleenrn]

A little vent here. If anyone should be knowlegable about PANDAS it is a pediatric ENT. I mean, who is in a position to diagnose PANDAS? Who sees a lot of children with undiagnosed PANDAS? Probably psychiatrists and pediatric ENT's have a lot of PANDAS children come to them for help, so would it not be critical for those physicians to know what they are talking about in regards to it?

 

I feel our ENT is a good surgeon and that is very important, but I am sorely disappointed with what she knows about PANDAS. She likes to lecture about how controversial it is, but I am so glad to know that we are done with antibiotics (very snark comment). When I explained to her that now the goal is to prevent any further strep, she looked at me like I was a space alien. She replied with a very annoyed look, "well, that is not how we (meaning all ENT's, not just her) treat these children, but if you are working with some PANDAS doctor who does it that way, well..." I told her it was very similiar to rheumatic fever and in the future it will be, she cut me off and stood to leave.

 

Glad that part is over, but unfortunately my 4 year old is going to need a T&A in the near future. I will go with her b/c she is an excellent surgeon, but I plan on dropping off a load of PANDAS articles for her to hopefully read.

 

Colleen

[kimballot]

Colleen - There are lots of excellent surgeons. My advice is to find one who is open to working with you.

Now that is the short version of my comments.

 

My longer version is below - but I am realizing that it turned into an emotional catharsis rather than advice for you.. so don't read it if you don't want to!

 

 

My son's ENT starting seeing my son in 1998 when he was a year old. None of us had ever heard of PANDAS. He watched my son grow from a calm baby to a raging toddler to an out of control preschooler on ritilin. He spent hours and hours on the phone with me for 7 years with chronic sinus infections and out of control behavior. By the time my son was 2 or 3 I realized that bedwetting, biting, and phone calls from day care/ preschool always preceded a sinus infection.

 

When he was 3 and I said "am I crazy??" the ENT said "maybe it's time for a CT scan" ... my son was not showing sinus symptoms at the time, but was showing his behavior problems. The CAT scan revealed horribly infected sinuses. The ENT never questioned me again. My son had an increase in PANDAS symptoms, I called ENT and he prescribed high dose ABX. We had no word for it, but we were treating PANDAS by trial and error with Augmentin, biaxin, and cleosin. He was using what he knew of medicine combined with what I knew of my child and we muddled through.

 

When my son was 6 I found out about PANDAS and sent letters and Swedo's article to my pediatrician and ENT. Although the ENT did not think my son could have GABHS in his sinuses, he did not rule it out completely.

 

When my son was 7 (2004) we finally had evidence that his tonsils might be harboring strep, and the ENT quickly removed them. Shortly after that my son was discharged from ENT.

 

My son went back to the same ENT this year when we discovered my son would need sinus surgery. He greeted us warmly and said "I had a feeling I was going to see you again. I was just cleaning my attic and I came across the PANDAS article you gave me many years ago. I read it and tossed it because I realized that I could get the info. off the internet now if I had another case like your son".

 

I filled him in on our most recent PANDAS journey. When we went to the children's hospital for surgery every nurse, resident, and tech that we met with before surgery read my son's diagnosis "Ehmoid mucocele and PANDAS". It was in every note. It was a REAL disease. I cannot tell you how respected that made me feel. No one asked me what PANDAS was - they already knew. I am sure the ENT informed them. This is the SAME children's hospital that I was at 2 months beforehand with a neurologist refusing to even run the PANDAS blood tests that were recommended - telling me I was looking for a needle in a haystack and that very few children had PANDAS - and my son had a tic disorder and was we were seeing all these symptoms because he was stressed with school.

 

The ENT did the sinus surgery and recommended 10 days of omnicef after surgery. Of course Dr. B kept my son on 500mg zith. We went back last week for follow up. The ENT never questioned the zith. He deferred to Dr. B and then took time to educate the resident that was with him.

 

My ENT is not a PANDAS expert. He really does not have to be. He is a kind, compassionate man who knows that there is plenty of evidence yet to be discovered, and a patient's history and presenting problems are what we are treating. He is happy to work with a PANDAS expert and I am so blessed to have had this person take care of my son.

 

I hope you can find an ENT who is open to helping you... or that you can get your ENT to come around.

[Fixit]

A little vent here. If anyone should be knowlegable about PANDAS it is a pediatric ENT. I mean, who is in a position to diagnose PANDAS? Who sees a lot of children with undiagnosed PANDAS? Probably psychiatrists and pediatric ENT's have a lot of PANDAS children come to them for help, so would it not be critical for those physicians to know what they are talking about in regards to it?

 

I feel our ENT is a good surgeon and that is very important, but I am sorely disappointed with what she knows about PANDAS. She likes to lecture about how controversial it is, but I am so glad to know that we are done with antibiotics (very snark comment). When I explained to her that now the goal is to prevent any further strep, she looked at me like I was a space alien. She replied with a very annoyed look, "well, that is not how we (meaning all ENT's, not just her) treat these children, but if you are working with some PANDAS doctor who does it that way, well..." I told her it was very similiar to rheumatic fever and in the future it will be, she cut me off and stood to leave.

 

Glad that part is over, but unfortunately my 4 year old is going to need a T&A in the near future. I will go with her b/c she is an excellent surgeon, but I plan on dropping off a load of PANDAS articles for her to hopefully read.

 

Colleen

 

I wouldn't worry about convreting the ent.....if he's agoo surgerion..stick with that aspect..

i mentioned to our ent...didn't seem interested...but that is not my panda doc...

i have a pnada friendly ped...but resistant to long term abx...very interested in the articles i bring

I can't fight anymore..i mention it..some times i take articles with me...and i hoping the battery of info coming out will the job...not quickly, but in a couple years it will be better(not great)among the other doctors

so my panda docs are L, B and the 2 Dan docs...of course all out of state...

Edited November 12, 2010 by Fixit

[JAG10]

Colleen,

 

Heavy sigh... I suppose it depends on how much energy or will you have to want everyone "on board." My dd had an ENT who was an excellent surgeon and very blunt....he was willing to be the technician to perform her T & A, that's it. She did not have any ongoing ENT issues, we just needed the Bacteria Campground removed from her throat, inches away from her brain. If that's what you need, sounds like you will be okay. Give her the articles and a gentle smile realizing you are helping to lay the ground work for patients that will come years after yours.

 

The orphan illness will either be raised by a village or raise himself!

[PhillyPA]

Your ENT is annoying. If it were me I would have walked out and said two letters of the alphabet at her.

 

There are lots of good surgeons. Give your money to a surgeon who listens to you.

[EAMom]

A little vent here. If anyone should be knowlegable about PANDAS it is a pediatric ENT. I mean, who is in a position to diagnose PANDAS? Who sees a lot of children with undiagnosed PANDAS? Probably psychiatrists and pediatric ENT's have a lot of PANDAS children come to them for help, so would it not be critical for those physicians to know what they are talking about in regards to it?

 

I feel our ENT is a good surgeon and that is very important, but I am sorely disappointed with what she knows about PANDAS. She likes to lecture about how controversial it is, but I am so glad to know that we are done with antibiotics (very snark comment). When I explained to her that now the goal is to prevent any further strep, she looked at me like I was a space alien. She replied with a very annoyed look, "well, that is not how we (meaning all ENT's, not just her) treat these children, but if you are working with some PANDAS doctor who does it that way, well..." I told her it was very similiar to rheumatic fever and in the future it will be, she cut me off and stood to leave.

 

Glad that part is over, but unfortunately my 4 year old is going to need a T&A in the near future. I will go with her b/c she is an excellent surgeon, but I plan on dropping off a load of PANDAS articles for her to hopefully read.

 

Colleen

 

I'm sorry you had to deal with a doc with an attitude like that.

 

BTW, if one more doc (or other medical professional) ever tells me "PANDAS is a very controversial disease" (as in they don't really believe in it) I might just have to swat them.

Edited November 13, 2010 by EAMom

[thereishope]

Hm....yeah....that's how we treat those kids....hm....don't know how to respond. I sure hope she doesn't think tonsil removal means they won't get strep again. Even if you play by their numbers, you're child still has a 20% chance of getting strep. Notice, when they throw the numbers at you, they always word it that their chance have declined by 80%, but when you switch it and say they still have a 20% chance of getting it, it sounds a lot worse.IMO, that's high for a child that has an autoimmune disorder that is directly affected by strep. My son got strep one month after surgery. My ENT said my son just had bad luck.

 

 

A little vent here. If anyone should be knowlegable about PANDAS it is a pediatric ENT. I mean, who is in a position to diagnose PANDAS? Who sees a lot of children with undiagnosed PANDAS? Probably psychiatrists and pediatric ENT's have a lot of PANDAS children come to them for help, so would it not be critical for those physicians to know what they are talking about in regards to it?

 

I feel our ENT is a good surgeon and that is very important, but I am sorely disappointed with what she knows about PANDAS. She likes to lecture about how controversial it is, but I am so glad to know that we are done with antibiotics (very snark comment). When I explained to her that now the goal is to prevent any further strep, she looked at me like I was a space alien. She replied with a very annoyed look, "well, that is not how we (meaning all ENT's, not just her) treat these children, but if you are working with some PANDAS doctor who does it that way, well..." I told her it was very similiar to rheumatic fever and in the future it will be, she cut me off and stood to leave.

 

Glad that part is over, but unfortunately my 4 year old is going to need a T&A in the near future. I will go with her b/c she is an excellent surgeon, but I plan on dropping off a load of PANDAS articles for her to hopefully read.

 

Colleen

Edited November 13, 2010 by Vickie