Oh, no, he didn't....

[forjpj]

So, my sis took her daughter to a neurologist yesterday. Am I allowed to say the organization name, cause it's a big one? They didn't go to receive pandas treatment, but it is a slight concern. When the doc asked my sis if there was anything else he needed to know family history, etc. she mentioned the family history of pandas. He told her...are you ready for this?...are you sitting down? He said, "I think pandas are animals that live in China." My sister flipped...said she actually saw red!! And then, she pretty much put him in his place!! He apologized over and over, but then of course, went into the reason why he didn't believe. So I am collecting a nice little pile of info (including some of son's own personal information that only a heartless person could ignore) to send him with a very nice letter...and I'm being serious there. More flies with honey, don't ya know!! This little incident will keep me plugging along for days!!

[mama2alex]

Good for her, and you! Love these stories about family members who are 100% behind the moms. Don't forget to include the new NIMH website page. If its a big hospital, that should definitely impress him.

[thereishope]

What!!!!!! How insulting! See, I would LOVE to see these "doctors" faces when they read that NIMH post and it specifically uses the acronymn PANDAS. I am so happy that was written prior to any name change.

Edited August 17, 2010 by Vickie

[lyme_mom]

Doesn't surprise me after our experience with Lyme disease. I took my son to a children's hospital to see some highly respected pediatric neurologist. He had Lyme disease and dr jones believed he also had bartonella, either of which cOuld have caused his bells palsy, which means half his face was catalyzed. The neurologist mocked our Lyme doctor and was flabbergasted when i told hm he had two tickborne illnesses- he told us that wAs not possible for one tick to carry two diseases and he said he had never heard of bartonella! Battonella causes neurological symptoms and he not only had not ever heard of it but he made it clear he thought it was not a disease. Then he told me(and my then ten year old son) that his palsy would never go away. He was wrong on all counts and the palsy went away because we did what the Lyme doctors prescribed. The whole experience was very unpleasant and a little disturbing. The arrogance and heartlessness of some doctors is shocking.needless to say we never went back and my son said "he wasn't very nice."

[EAMom]

The neurologist mocked our Lyme doctor and was flabbergasted when i told hm he had two tickborne illnesses- he told us that wAs not possible for one tick to carry two diseases and he said he had never heard of bartonella!

 

Scary!

 

Yeah. 'cause the tick fills up with one disease so the 2nd one doesn't fit? (And I'm sure it's also impossible that your son could have been bitten by more than 1 tick!)

Edited August 18, 2010 by EAMom

[Megs_Mom]

The neurologist mocked our Lyme doctor and was flabbergasted when i told hm he had two tickborne illnesses- he told us that wAs not possible for one tick to carry two diseases and he said he had never heard of bartonella!

 

Scary!

 

Yeah. 'cause the tick fills up with one disease so the 2nd one doesn't fit? (And I'm sure it's also impossible that your son could have been bitten by more than 1 tick!)

 

There is a great study of tics (the bugs, not the movements) in NY, showing that 30% carry 2 microbes. And they did not test for all common varients, just a few - and still found multiple. Here is the link: http://cii.columbia.edu/pub/documents/AssessmentofPolymicrobialInfectionsinTicksinNYS.pdf (for those that are slow like me "polymicrobial" means "more than one microbe").

Edited August 18, 2010 by Meg's Mom

[JTs-Mom]

Also being in VA, I would sure like to know the name of the institution... so I can stay away!

 

I agree... the arrogance of some docs is APPALLING! Some went to med school eons ago, subscribe to one or two magazines that they skim through each month, attend one conference per year, and think they are "current". Yet, they can't comprehend that a parent who spends COUNTLESS HOURS for months, or even years, researching a particular disorder just MIGHT know a thing or two about the current thinking, latest clinical studies, treatments that are working for others, etc.

[Stephanie2]

Sometimes I wonder if these type of responses to pandas makes the docs feel defensive b/c 1. they don't know enough about it so easier to say I don't believe in it, and 2. it doesn't quite fit into their specialty if it is caused by an infection so they blow it off...

 

So narrow minded and they only got into medicine for one reason if their egos get in the way of having an open mind.....$$$$$. Just my opinion...

[lyme_mom]

It's amazing to me how uninformed so many doctors are about Lyme and other things. That's a great reference about the ticks and how many bacteria they carry. It is interesting that they found microbes in 70 percent of the ticks! We went to a maryland location of children's. That experience really makes me wonder how good they are at other illnesses as well. I thought they were supposed to be the best :-). The neurologist told us that he had seen a number of patients from our lyme doctor and he said this with disgust. I then asked him if they did not get well-what was the problem? He said "oh they were very happy with the doctor so I told them to keep going to him".. He said this as if he was saying goodriddens, so strange. He was very emotional and oblivious to the fact that my son Was taking in everything he said. I should have written a letter but I had my hands pretty full at the time dealing with son's illness. I blame the infectious disease society of America for creating such discord among doctors and for their flawed guidelines on he diagnosis and treatment of Lyme. If you read about the ISDA panel it is clear that a few egos are controlling the dialogue and that most have financial conflicts of interest related to Lyme. The under our skin movie makes this clear as does cure unknown I think. My for,er pediatrician was dismissive of Lyme too. In fact we were on our way to get a picc line for my son and he looked at me with a big Dunbar grin and said " Lyme disease is the new gulf war syndrome." huh? My son had a very positive test so there was no doubt he had Lyme and I happen to believe those who came home from the gulf were sick. It was appalling.

[lyme_mom]

The neurologist mocked our Lyme doctor and was flabbergasted when i told hm he had two tickborne illnesses- he told us that wAs not possible for one tick to carry two diseases and he said he had never heard of bartonella!

 

Scary!

 

Yeah. 'cause the tick fills up with one disease so the 2nd one doesn't fit? (And I'm sure it's also impossible that your son could have been bitten by more than 1 tick!)

That's a great point! He had an axe to grind obviously. Being so ignorant about Lyme is notba luxury a parent with a veer sick child can afford. These doctors need to get Lyme themselves to realize how awful it really is.

[airial95]

Sometimes I wonder if these type of responses to pandas makes the docs feel defensive b/c 1. they don't know enough about it so easier to say I don't believe in it, and 2. it doesn't quite fit into their specialty if it is caused by an infection so they blow it off...

 

So narrow minded and they only got into medicine for one reason if their egos get in the way of having an open mind.....$$$$$. Just my opinion...

 

It's so true!! But I have to tell a quick story about my pediatrician.

 

We were in yesterday because my son has strep - yet again!! No real symptoms, just acting very afraid of everything yesterday and clinging to me like he never has before (he had a really bad day behavior wise in school the day before too.) So - I became "crazy mom" and called the pediatrician - sure enough - my hunch was right! We were talking about his progress, recent bloodwork and such and he looked right at me and said "Did Dr. Murphy give you any idea how long this might last when you met with her?" I said no - to which he responded "Have you read anything about how long this can go on? I can't find anything consistent on how long treatment should be" I told him what I've read, and what I've learned here on the forums (that there is no magic answer). After which he basically said that since what we're doing is working, and Dr. Murphy is on board with it, we'll keep on until he's 100% better or until it stops working and we go another direction (which he said may include IVIG or PEX.) I just thought it was great that my doctor looked at me and asked me what I've learned or know that he may not. It's very rare and refreshing.

 

 

I know that those of you who are familiar with me are sick of me "bragging" about my dr. -but he is a testament to how if we all keep fighting and "educating" our doctors the word does get out!!

[T_Mom]

I think I would just forward the recent blog entry by Tom Insel (Director of NIMH) to the doctor--

 

I am sorry, but this is so incredibly rude, insensitive, and unprofessional, period.

Edited August 19, 2010 by T.Mom

[forjpj]

University of Virginia!! From what I've gathered...neurology isn't on board with pandas, psyche isn't on board, but the ENT docs are!! Go figure!! It is just a shame because they could be such a great resource. I think I will be mailing my stuff out tomorrow, and definitely the NIH announcement. And when I get the white paper I'll send that too!!

Edited August 19, 2010 by forjpj

[T_Mom]

You know--it is so difficult to remain positive for so long with this--We all know that!

I am sure you will make an impression with the info. shared -- good luck!

[airial95]

University of Virginia!! From what I've gathered...neurology isn't on board with pandas, psyche isn't on board, but the ENT docs are!! Go figure!! It is just a shame because they could be such a great resource. I think I will be mailing my stuff out tomorrow, and definitely the NIH announcement. And when I get the white paper I'll send that too!!

 

When we first saw our neruologist, he was skeptical and annoyed when we mentioned our PANDAS dx, but after exam, records review and a normal EEG - his final report back to our pediatrician was - guess what - PANDAS! He recommended to maintain the current course of treatment with no meds for the tics or OCD unless they become worse and it interferes with my son's daily functioning. He even asked for the blood results we were getting ready to run...

 

So the word is getting out even to those that aren't on board...just slowly. I also think it helps to have strong parents willing to stand toe to toe with these guys armed with good information!