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Non-treatment at Duke Children's Hosp., Durham NC


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This makes me so mad. I recently called Duke Childrens Hosp. in Durham NC, and was transferred to Neurology by the referral staff member there. I was given the names of 2 docs who "treat PANDAS". When I asked the receptionist for an appt. and inquired as to the experience of the docs, she put me on hold. She returned several minutes later and said, and I quote "They are all tlaking right now and trying to decide which doctor will see your son, because they really don't believe in that diagnosis". OK, well then why are they wasting my time and money? I asked this very question and she said "Well, a lot of kids come here with a PANDAS diagnosis and then the doctors find out that the diagnosis is wrong and it is really something else". Really?? The lack of professionalsm and the attitude of this hospital floored me. This, after they were in part responsible for my son's lack of care when he was 1st diagnosed at age 2.5. I took him to a Neuropsych there who stated: "It could be Tourette's and it could be PANDAS. The symptoms following Strep seem to point toward PANDAS...come back in 6 months". 6 months later we were in serious trouble and the train had already left the station. Thank you so much for throwing my son to the wolves. I will stick with our long journeys to the North, thank you!

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So sorry..

Boston Childrens Hospital is just as bad! I am thankful I have another option in Boston--Mass General is helping us.

 

 

And, I know you have a doc at CHOP who treats, but she's the only one, and very limited on who she will take. The other docs at CHOP give the exact same answer that you got. Isn't it terribly sad? What I want to know is what will it take to make these docs actually believe? There have been 2 mouse/rat studies showing it exists, the NIMH says it exists, and multiple other studies. Then the other question this begs is...how many of those "other cases of PANDAS that turned out not to be PANDAS" actually came back? This is why there are so many really sick kids out there...doctors just refusing to accept rather than just not knowing. Personally, I think they should be strung up, and what would be better is if they PERSONALLY got sick with strep, lyme or some other infection triggered autoimmune disorder, and then couldn't get treatment!!! (sorry, I just had to let it out.)

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Well, this is what really got me - Those many cases that supposedly weren't really PANDAS - well. at least some of them probably WERE PANDAS and then were not treated correctly because of these crazy doc's "correct" dx, leaving the parents and kids out to dry! I was so angry when I got off of the phone that I was shaking for 5 minutes.

 

@minimaxwell: are you being treated by Dr. Gellar (sp?) at Mass General?

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Extremely frustrating! And I used to live in that area!! I don't know what it's going to take to convince the medical masses of pandas existence. What'll they say when the IVIG trial is released?? I do think however that the pandas genie is out of the bottle and due to all the websites in the last two years, parents are learning about it faster. I asked a new person to our support group recently how she realized it was pandas? She did a quick on-line search of "behavior changes after strep" and voila! Her ds had a strep infection just last month and she thought she was late in treating if this was pandas! I had to inform her that many parents spend years on the wrong path (in my case 9) before realizing it's pandas. So the point being progress is being made and pandas is not going to go away!

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OH reading your post makes me want to scream!! Why are doctor's so reluctant to treat our severly ill kids with WHATEVER works?! Be it antibiotics, PEX or IVIg???!! This is a devastating mental disorder that can be HELPED!! Not only that but why don't more doctor's want to take the lead - do more research - connect more dots??? It is just so frustrating and maddening!!! There have to be factors that are related - as to why some kids get it and some kids don't - and we need research done!! Like Genetics? Vaccines? Autoimmune response? Why the weakened BBB?? Yes I understand that some of these kids may be predisposed to OCD or anxiety as the case may be --- but WHY do they suddenly have personality changes and a slew of other psychiatric diagnoses piled on them ALL AT ONCE?? As for my daughter I could check off almost EVERY SINGLE SYMPTOM AND THEN SOME when it comes to describing PANDAS!!! Going from "normal" to what happened to her seems it could only be because of a "encephalatic brain injury!" I believe that is what Dr K told us too. Silent scream time "GRRRHHHHHHHHH!!!" Ok now back to fighting the fight for my girl!! Thank you to all the parents/family members that post on here and keep the ball rolling!!!

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IMHO-There is something way more sinister or calculated about some of these docs/hospitals not, at least, getting educated. In years past I might understand how slow some illness got around. The era when an institution like Mayo was a premiere place to go when your local doc and others nearby had no more answers. Not any more. A few clicks of a keyboard, a quick call, fax, email and a doc can be in touch with the latest & greatest experts and information--IF they wanted to be informed. Follow the money--again--MHO--drug companies have A LOT to lose if "the new antipsychotic is an antibiotic." (I love this phrase, whoever on the forum coined it!)And Advil!! A few companies that are into selling IVIG have the most to gain. And the companies that have the most to lose in the way of psychiatric meds probably are not the ones peddling IVIG. I just think this is a conspiracy, Man!! All my humble opinion, only. Dawn

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The next time someone tells me they don't "believe" in PANDAS I am going to say "this isn't a religion and it isn't Santa Claus or the Tooth Fairy... It is not a question of believing in it, it is a question of evaluating my son to find the best explanation for his unusual symptoms. My son has neuropsychiatric symptoms when he has an infection and he has for many years, which is well documented in his case. If you would feel better, you can say you are treating an infection -triggered neuropsychiatric disorder, and not go against your personal beliefs against PANDAS, which seem to be impairing your ability to provide evidence-based treatment for my child.

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Kimballot - I wish I could sum it up in such a great, sucinct way when faced with an incompetent dr. I might have to have to get what you said tatooed on my inner wrist... nice :)

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Yep, already been through that at Duke and gave up on them in 2003. This is when our DD5 started showing the first sign of PANDAS with an eye blinking tic after having strep. We made an appointment and me with a doctor and intern. When we mentioned PANDAS, they ignored it and just said it is tourettes. PANDAS research was still fairly young then, but it was out and I knew about it from my findings on the internet. So 9 or 10 years later now, I see Duke has not changed...that is too bad, but not surprising. And they were the ones who diagnosed me with SC in 1972! It doesn't seem they even consider SC any longer...or realize PANDAS is a different variation of SC, close cousin. I told them about my history, but they just gave me a blank look. When DS got PANDAS in 2010, we did not consider Duke and went to Raleigh Neurology...which was also a waste of time, by the way. We then headed North to Dr Latimer.

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This makes me so mad. I recently called Duke Childrens Hosp. in Durham NC, and was transferred to Neurology by the referral staff member there. I was given the names of 2 docs who "treat PANDAS". When I asked the receptionist for an appt. and inquired as to the experience of the docs, she put me on hold. She returned several minutes later and said, and I quote "They are all tlaking right now and trying to decide which doctor will see your son, because they really don't believe in that diagnosis". OK, well then why are they wasting my time and money? I asked this very question and she said "Well, a lot of kids come here with a PANDAS diagnosis and then the doctors find out that the diagnosis is wrong and it is really something else". Really?? The lack of professionalsm and the attitude of this hospital floored me. This, after they were in part responsible for my son's lack of care when he was 1st diagnosed at age 2.5. I took him to a Neuropsych there who stated: "It could be Tourette's and it could be PANDAS. The symptoms following Strep seem to point toward PANDAS...come back in 6 months". 6 months later we were in serious trouble and the train had already left the station. Thank you so much for throwing my son to the wolves. I will stick with our long journeys to the North, thank you!

 

 

Hi, I live in NC and am my son is being treated at Duke Hospital, and my nephew, with antibotics. We see the Pediatric Infectious Diseases department. Email me and I will give you a name - heveritt1@yahoo.com

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  • 3 months later...

 

 

Hi, I live in NC and am my son is being treated at Duke Hospital, and my nephew, with antibotics. We see the Pediatric Infectious Diseases department. Email me and I will give you a name - heveritt1@yahoo.com

 

Hi Heveritt!

I'm looking in Durham & will email you asap!

Thank you

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Its all how you phrase things. If you ask: Would you treat immune mediated encephalitis, they'll say yes. If you say, PANDAS, they'll say no. If you say, my son has a case of immune mediated encephalitis that has responded in the past to steroids and IVIG- can you perscribe these treatments, they might be more wiling to help. Try not to get so caught up on the word PANDAS. After all, the name is constantly changing. Focus on the core issue- autoimmune encephalitis.

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Good advice, LaurenK. Haven't thought about going about it that way.

 

This issue is particularly disturbing to me since my brother is a doctor at a well known children's hospital and still doesn't believe in PANDAS. It administers IVIG everyday yet we have to travel many states away to receive treatment. It has really put a wedge in my relationship with him (as you can imagine). Then, when my dd was diagnosed with Lyme it made things so much worse. I truly hope one day he comes to me and apologizes for all the hurtful comments he has made. I hope the research comes through quickly with more and more proof that this DOES exist. He has repeatedly stated that all of the studies are far too small to prove anything (which I guess is why the mainstream medical world doesn't get it yet). Annoying since it is our kids that suffer. :wacko:

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