The latest BCH update

[LNN]

Here's a good recap of the BCH story on Justina http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html?s_campaign=email_BG_TodaysHeadline

 

There's a lot to be learned here.

[3bmom]

Comes to close to home for us. First hospital stay at 6 took him to psych and we could only visit 1 1/2 hours a day. 10 days later we left with outpatient OCD services and respirodal. 4 months of therapy little change and than we go in and all his germ issues have vanished and the Dr wants to know what I did last week. Nothing but he did have antibiotics for a raving ear infection.

 

Fast forward 5 years at same hospital, thru him in psych, refused blood work or even a swab, refused immunologist from their own hospital requests and said ALL Drs including Director would be available during parent meeting. Only resident Dr and social worker were present. I brought up his records and antibiotics. Nothing! We got parenting lessons and outpatient services (because of Beth).

 

It turned out he had 3 infections (one being strep) and life threatening allergies....all shown with evidence based blood work.

 

What I can't figure out is Why? Just because the symptoms are new, or they don't understand it we will blame parents? Or mass

hysteria like the Leroy, NY girls?

 

I personally feel we have seriously changed the face of food and therefore seriously changed the face of medicine.

 

PANDAS, Autism, Lyme, Mito....all are controversial. All have gut issues. All have exploded since the 90's.

 

Why are hospitals ignoring these clues? Why are hospitals ignoring respected Dr's? Why are hospitals ignoring parents?

[rowingmom]

Ego.

[JoyBop]

Agreed. I get how some docs might not be comfortable with experimental treatments or even dealing themselves with disorders that are outside their own comfort zone. What I don't understand is how they can take parents right away and keep children locked I psych units against their families will. They treat us all like criminals. The best we can all do is stay away from those places as much as possible and keep strong connections with the docs that are on our side. Someone made a poignant comment on another thread reminding us to Play the game and keep a reasonable and responsible profile so we don't put ourselves in a compromising situation.

 

There were a few mentions at the conference if a few inpatient hospitals that DO treat PANDAS patients appropriately. I suppose if my kid was escalating out if control I would contact one of those facilities sooner rather than later and stay out of unknown hospitals. We live in the Boston area and get amazing treatment at mass general. Thank goodness we never went to BCH. I never did get a good feeling there. When my DS had mysterious and life threatening GI issues they had huge egos and dismissed us bc we did not fit into a nice near package of black or white.

Edited December 15, 2013 by joybop

[qannie47]

Geez...it sent chills up my spine to read this and reflect on our fall stay at a premier children's hospital. I now have a fuller understanding now of what was behind the arrogant, cold, non-compassionate and close minded reaction from many of the staff members. I let my ds run amuck to his full extent with no interference from me as his mom so that the doctors could get a good look at what his symptoms were. I can imagine now what they were truly thinking...as a parent, one would not wish for O bands to appear in their child's spinal fluid, but I hope it wiped the smug, incredulous expression off many of their faces.

[3bmom]

I wish the hospital would of dove ANY testing! Prove me wrong.

 

What scares me is the first time they didn't understand but were willing to look for strep (only infection tested) and they brought everyone together including a world renown OCD specialist. I authorized a video tape for learning etc. They didn't have the answers but there was an attempt.

 

The second time nothing. A child with hospital records from their own facility which they ignored. 11 yr old with 2 month 30 lb weight loss. Matted hair like a homeless person. I even asked about a shower and eating. They didn't even know. Basically no observations for 4 days. They believed it was all us. We did parenting lessons because we were afraid of what might happen if we didn't. We are by no means perfect parents but the teacher took notes from us!

 

A year later another family went and their son almost died why they ignored his bladder infection among other things since they again refused blood work. Maybe arrogance but in some hospitals the "climate" is different.

 

LLM is right, even though very stressed, stay calm, stay focused and choose your words carefully.

[Hrosenkrantz]

Anybody want to post part two?

[LNN]

Here's part 2 - http://www.bostonglobe.com/metro/2013/12/16/month-medical-ordeal-conclusion-still-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html?s_campaign=email_BG_TodaysHeadline

[MomWithOCDSon]

In reading through the whole story, I certainly think BCH needs to be held accountable, as well as we parents needing to be wise and measured as to where we go and how we present ourselves.

 

All that being said, though, don't you think that Boston DCFS needs to be held accountable, as well? Shouldn't we be picketing them, too? Conflicts of interest, failing to do adequate background, omitting meaningful information and interviews from their reports to the court, etc.?! I mean, REALLY?!?! That almost smells like collusion with BCH!

[qannie47]

omg.....In reading this story and reflecting on my pandas son's stay at a premier childrens hospital I reflect back on the odd and eerie feeling that I had there from all of the doctors and many nurses. When the psychiatrists came in to talk to me, I was told it was to talk about my son. I realize now that it was to interview me, and my parenting/mental state. I was open, honest, and willing to hear a different point of view. They ended our consultation supporting that a medical approach seemed to be appropriate. It ended abruptly, and I could not put my finger on what had just happened....I think what might have happened is that I had just dodged a bullet....now more then ever, I hope they are all choking on that O band finding of the spinal fluid....the head neuro guy told me "we don't expect to find anything in the LP, so you wont be needing to contact us again". My spine is shivering.

[nicklemama]

Nancy, you've pretty much said it all. We have to be very careful when we take our children to the hospital and we need to be very selective where we take them. Top rated children's hospitals are not necessarily the best choice in all cases. We have two here and one of them is full of naysayers. Other recognizes but is nowhere near competent to treat PANDAS.

[MomWithOCDSon]

Children's Memorial here in Chicago is considered a premier institution for pediatric illnesses. Unfortunately, however, the head of its pediatric immunology and infectious disease department, Dr. Stanford Shulman, is a very vocal PANDAS nay-sayer. I've never heard of this institution alleging medical child abuse or getting DCFS involved, but you're so right, Nicklemama. Too many of these "premier" institutions have their collective heads stuck in the Quicksand of Ego and Reputation to employ the necessary intellectual curiosity and resolve to truly help our kids. It's a stinkin' shame.

[3bmom]

At our hospital I found out there are Dr's that believe there. (Found out at a party, small world), but their hands are tied. I want to know how, why??? Be great for an investigative journalist. What hospitals, how many.

 

 

It appears from posts and other parents I have met that private school affiliated hospitals may be more on board. Anyone with thoughts on this or experience?

[T_Anna]

Columbia Presbyterian here in NYC doesn't welcome PANDAS despite Mady Horning's research. An on staff ped neurologist said "I've seen Pandas at the zoo"...and overlooked a friend's child's LabCorp + for Lyme (ID doctor said it didn't present clinically .....she had double

vision and neck pain). Thankfully the neuro ophthalmologist put her on IV abx in hospital and abx for a year.

 

T.Anna