Family battling Children’s Hospital to bring teen home for Christmas #2

[octobermoon]

And? Resistance toward treatment plan-we already know what that was. BCH wanted to treat her for somatoform and parents refused. I would have refused as well if I were in their shoes.
Multiple medical procedures? Some people need multiple medical procedures.
Why exactly did BCH think these procedures were not needed? All of the procedures were approved by doctors and insurance. This child had multiple health issues. If parents didn't do these procedures they would have been accused of neglect.
Regressive behavior changes around family? I guess that is in the eye of the beholder, as she doesn't seem improved after being taken away from her family.
And that is all she wrote. There doesn't appear to be some super secret evidence that DCF has, as being claimed around here.

See #4 at this link....

http://cbsboston.files.wordpress.com/2014/03/scan.pdf


Not super secret, not hidden from the family and/or their lawyer. It isn't our business to read Justina's private medical records. Judge saw and heard it all.

moo jmo imo

 

[annahanna]

Justina's family showed reporters her medical records. What is reported is not just being based on their words.

Do you have a source for this claim? Something besides a family member?

"But the family showed Fox CT proof that every procedure and prescription was sanctioned by doctors, including Tufts Medical Center specialist Dr. Mark Korson."

Read more: http://foxct.com/2013/11/19/hospita...-after-parents-argue-diagnosis/#ixzz32f9AxE00

Thank you for posting that link. I have read that article and I can see where someone might interpret the quote you included as meaning that the family "showed reporters her medical records." But actually, that is not what that says. What it says is that the family provided "proof that every procedure and prescription was sanctioned by doctors." At best, this is highly incomplete. Of course every procedure ordered by a doctor and every prescription written by a doctor was sanctioned by a doctor. That kind of goes without saying. Nobody is accusing them of forging prescriptions or medical orders. It is likely that the reporter was not shown records from the many specialists the Pelletier parents fired along the way, records where doctors disagreed with the course of action the family was following, orders for procedures or tests that the family chose not to comply with (family counseling for instance - one of the reasons Tufts staff filed a DCF complaint), consultation notes where a doctor disagreed with or questioned another doctor, the list goes on...

K_Z said in best:

We have no way to know exactly what kind of records, nor how comprehensive the records were, nor what may have been omitted, that were purportedly provided to reporters.

AND

Reporters are not typically considered as any kind of experts in reading or interpreting highly complex medical records.

 

[txsvicki]

Anxiety can cause rapid heartbeat. I've thought mine would beat right out of my chest before starting an SSRI.

 

[octobermoon]

Anxiety can cause rapid heartbeat. I've thought mine would beat right out of my chest before starting an SSRI.

So can pain meds. My mom's heartbeat and BP went through the roof in the hospital. They had to give her something to counteract it.

 

[annahanna]

Multiple medical procedures? Some people need multiple medical procedures.
Why exactly did BCH think these procedures were not needed? All of the procedures were approved by doctors and insurance.

Yes there are patients that need multiple medical procedures. However, speaking as a parent of a child who has needed multiple innovative medical procedures at several different hospitals due to a rare medical condition, I can tell you that it can be seen as a red warning flag of possible medical abuse. If you combine a history of multiple seemingly unrelated extreme medical procedures with belligerent demanding behavior and insistence on seeing a doctor who is not in the hospital and not on call, doctors are probably going to look at you pretty closely.

My understanding is that the procedure that really rang alarm bells is the cecostomy. You have stated before that she underwent extensive motility testing before this procedure was done. If Dr Flores was her GI at the time, I have no doubt this was done as he is a highly regarded motility specialist. However, he is not a surgeon and he would not have been the one to do the cecostomy surgery. Cecostomy is a last resort surgery (as is the colon removal that you have previously mentioned). There are multiple steps in between the daily laxatives the parents mentioned doing and the insertion of a permanent clean out tube into the child's body. If they did this against the advice of Dr Flores (i'm not saying they did but I am making an educated guess that they did) then it is no wonder the intake physicians were concerned.

The simple fact that a doctor performed a procedure and insurance paid for it does not mean that it was the right thing or the most recommended thing to do. It just means that they found a doctor willing and able to do it.

 

[octobermoon]

Yes there are patients that need multiple medical procedures. However, speaking as a parent of a child who has needed multiple innovative medical procedures at several different hospitals due to a rare medical condition, I can tell you that it can be seen as a red warning flag of possible medical abuse. If you combine a history of multiple seemingly unrelated extreme medical procedures with belligerent demanding behavior and insistence on seeing a doctor who is not in the hospital and not on call, doctors are probably going to look at you pretty closely.

My understanding is that the procedure that really rang alarm bells is the cecostomy. You have stated before that she underwent extensive motility testing before this procedure was done. If Dr Flores was her GI at the time, I have no doubt this was done as he is a highly regarded motility specialist. However, he is not a surgeon and he would not have been the one to do the cecostomy surgery. Cecostomy is a last resort surgery (as is the colon removal that you have previously mentioned). There are multiple steps in between the daily laxatives the parents mentioned doing and the insertion of a permanent clean out tube into the child's body. If they did this against the advice of Dr Flores (i'm not saying they did but I am making an educated guess that they did) then it is no wonder the intake physicians were concerned.

The simple fact that a doctor performed a procedure and insurance paid for it does not mean that it was the right thing or the most recommended thing to do. It just means that they found a doctor willing and able to do it.

Would over use of pain meds cause the need for a cecostomy? If you know

 

[annahanna]

I do not believe so. I am not a doctor - just a mother of a chronically ill child who is very familiar with motility disorders (among others), Boston Children's Hospital, and Dr Flores' protocols.

Over use of pain medication - actually any use of pain medication - can cause chronic constipation. Usually, chronic constipation due to pain medication clears up when the pain medication is stopped. The family has reported that Justina has chronic constipation and they have reported that she has a GI motility disorder. I am not sure if she has both or if they are using the terms interchangeably. (They are similar but not exactly the same.) A cecostomy is not a common procedure for motility disorders - nor is removal of the colon. Cecostomy is sometimes done with severe intractable chronic constipation when all other options have failed - dietary changes, laxatives, prokenetic medications, daily enemas, various other prescription medications, botox - there are more.

 

[Morag]

Would over use of pain meds cause the need for a cecostomy? If you know

Oooh, oooh, I know this one! Having nursed a spouse who was on pain killers for a short period with surgery, pain killers can cause epic constipation!

 

[octobermoon]

I do not believe so. I am not a doctor - just a mother of a chronically ill child who is very familiar with motility disorders (among others), Boston Children's Hospital, and Dr Flores' protocols.

Over use of pain medication - actually any use of pain medication - can cause chronic constipation. Usually, chronic constipation due to pain medication clears up when the pain medication is stopped. The family has reported that Justina has chronic constipation and they have reported that she has a GI motility disorder. I am not sure if she has both or if they are using the terms interchangeably. (They are similar but not exactly the same.) A cecostomy is not a common procedure for motility disorders - nor is removal of the colon. Cecostomy is sometimes done with severe intractable chronic constipation when all other options have failed - dietary changes, laxatives, prokenetic medications, daily enemas, various other prescription medications, botox - there are more.

Thank you

 

[octobermoon]

Oooh, oooh, I know this one! Having nursed a spouse who was on pain killers for a short period with surgery, pain killers can cause epic constipation!

Thanks, was just wondering if over-medicating her was one of the red flags. I have heard of ileostomy (sp?) surgery because of pain med abuse but not cecostomy. Honestly don't really know the difference between the two.

 

[sweetmom]

I do not believe so. I am not a doctor - just a mother of a chronically ill child who is very familiar with motility disorders (among others), Boston Children's Hospital, and Dr Flores' protocols.

Over use of pain medication - actually any use of pain medication - can cause chronic constipation. Usually, chronic constipation due to pain medication clears up when the pain medication is stopped. The family has reported that Justina has chronic constipation and they have reported that she has a GI motility disorder. I am not sure if she has both or if they are using the terms interchangeably. (They are similar but not exactly the same.) A cecostomy is not a common procedure for motility disorders - nor is removal of the colon. Cecostomy is sometimes done with severe intractable chronic constipation when all other options have failed - dietary changes, laxatives, prokenetic medications, daily enemas, various other prescription medications, botox - there are more.

So sorry to hear about your child's problems. I wish you both the best.

I am the mother of a child who had the condition called encopresis: withholding bowel movements for psychological reasons (perhaps triggered by some especially painful movements that cause fear...we never learned what triggered it.). The more withholding, the more constipation, to the point where the colon stretches and normal BMs become nearly impossible. My child was helped by psychological counseling and eventually the problem stopped. But it took a long time. I cannot help but wonder if this might be one of Justina's problems that eventually led to the cecostomy.

 

[jjenny]

Yes there are patients that need multiple medical procedures. However, speaking as a parent of a child who has needed multiple innovative medical procedures at several different hospitals due to a rare medical condition, I can tell you that it can be seen as a red warning flag of possible medical abuse. If you combine a history of multiple seemingly unrelated extreme medical procedures with belligerent demanding behavior and insistence on seeing a doctor who is not in the hospital and not on call, doctors are probably going to look at you pretty closely.

My understanding is that the procedure that really rang alarm bells is the cecostomy. You have stated before that she underwent extensive motility testing before this procedure was done. If Dr Flores was her GI at the time, I have no doubt this was done as he is a highly regarded motility specialist. However, he is not a surgeon and he would not have been the one to do the cecostomy surgery. Cecostomy is a last resort surgery (as is the colon removal that you have previously mentioned). There are multiple steps in between the daily laxatives the parents mentioned doing and the insertion of a permanent clean out tube into the child's body. If they did this against the advice of Dr Flores (i'm not saying they did but I am making an educated guess that they did) then it is no wonder the intake physicians were concerned.

The simple fact that a doctor performed a procedure and insurance paid for it does not mean that it was the right thing or the most recommended thing to do. It just means that they found a doctor willing and able to do it.

An educated guess? Based on what, exactly?
Dr. Flores thinks highly of the cecostomy prosedure. My educated guess is that he suggested it be done.
He is one of the co-authors on the manuscript below.

"The antegrade continence enema (ACE) procedure has been widely used in the management of children with defecation disorders. The ACE procedure has undergone many technical modifications. We developed a safe and minimally invasive technique, the laparoscopic-assisted percutaneous endoscopic cecostomy (LAPEC)."
http://www.giejournal.org/article/S0016-5107(10)02093-6/abstract

 

[Linda7NJ]

Yes there are patients that need multiple medical procedures. However, speaking as a parent of a child who has needed multiple innovative medical procedures at several different hospitals due to a rare medical condition, I can tell you that it can be seen as a red warning flag of possible medical abuse. If you combine a history of multiple seemingly unrelated extreme medical procedures with belligerent demanding behavior and insistence on seeing a doctor who is not in the hospital and not on call, doctors are probably going to look at you pretty closely.



My understanding is that the procedure that really rang alarm bells is the cecostomy. You have stated before that she underwent extensive motility testing before this procedure was done. If Dr Flores was her GI at the time, I have no doubt this was done as he is a highly regarded motility specialist. However, he is not a surgeon and he would not have been the one to do the cecostomy surgery. Cecostomy is a last resort surgery (as is the colon removal that you have previously mentioned). There are multiple steps in between the daily laxatives the parents mentioned doing and the insertion of a permanent clean out tube into the child's body. If they did this against the advice of Dr Flores (i'm not saying they did but I am making an educated guess that they did) then it is no wonder the intake physicians were concerned.



The simple fact that a doctor performed a procedure and insurance paid for it does not mean that it was the right thing or the most recommended thing to do. It just means that they found a doctor willing and able to do it.

Doesn't excessive laxatives also actually cause damage and long term abuse causes the inability for the bowels to function properly on their own?


Sent from my iPhone using Tapatalk

 

[Linda7NJ]

I do not believe so. I am not a doctor - just a mother of a chronically ill child who is very familiar with motility disorders (among others), Boston Children's Hospital, and Dr Flores' protocols.



Over use of pain medication - actually any use of pain medication - can cause chronic constipation. Usually, chronic constipation due to pain medication clears up when the pain medication is stopped. The family has reported that Justina has chronic constipation and they have reported that she has a GI motility disorder. I am not sure if she has both or if they are using the terms interchangeably. (They are similar but not exactly the same.) A cecostomy is not a common procedure for motility disorders - nor is removal of the colon. Cecostomy is sometimes done with severe intractable chronic constipation when all other options have failed - dietary changes, laxatives, prokenetic medications, daily enemas, various other prescription medications, botox - there are more.

I just wanted to thank you for sharing your insight and to say I'm sorry you're intimately familiar because your child suffers from similar issues. ((((((Hugs)))))))


Sent from my iPhone using Tapatalk

 

[jjenny]

Doesn't excessive laxatives also actually cause damage and long term abuse causes the inability for the bowels to function properly on their own?


Sent from my iPhone using Tapatalk

"If you frequently use certain laxatives over a period of weeks or months, they can decrease your colon's natural ability to contract and actually worsen constipation."


http://www.mayoclinic.org/diseases-conditions/constipation/in-depth/laxatives/art-20045906?pg=2

 

[Linda7NJ]

Thanks jjenny. I also found this:

Oral laxatives may interfere with your body's absorption of some medications and food nutrients. Rectal laxatives do not have this effect. Also, some oral and rectal laxatives can lead to an electrolyte imbalance, especially after prolonged use. Electrolytes, which include calcium, chloride, potassium, magnesium and sodium, regulate muscle contraction, heart rhythm, nerve function, fluid balance and other body functions. An electrolyte imbalance can cause abnormal heart rhythms, weakness, confusion and seizures.

http://www.mayoclinic.org/diseases-conditions/constipation/in-depth/laxatives/art-20045906?pg=1

Sent from my iPhone using Tapatalk

 

[octobermoon]

Thanks jjenny. I also found this:

Oral laxatives may interfere with your body's absorption of some medications and food nutrients. Rectal laxatives do not have this effect. Also, some oral and rectal laxatives can lead to an electrolyte imbalance, especially after prolonged use. Electrolytes, which include calcium, chloride, potassium, magnesium and sodium, regulate muscle contraction, heart rhythm, nerve function, fluid balance and other body functions. An electrolyte imbalance can cause abnormal heart rhythms, weakness, confusion and seizures.

http://www.mayoclinic.org/diseases-conditions/constipation/in-depth/laxatives/art-20045906?pg=1

Sent from my iPhone using Tapatalk

BBM interesting. just saying

 

[annahanna]

An educated guess? Based on what, exactly?
Dr. Flores thinks highly of the cecostomy prosedure. My educated guess is that he suggested it be done.
He is one of the co-authors on the manuscript below.

.... a mother of a chronically ill child who is very familiar with motility disorders (among others), Boston Children's Hospital, and Dr Flores' protocols.

My child saw Dr Flores several times before he referred us to a doctor and hospital in another state for a procedure not performed at Boston Children's. He is an impressive physician who has authored or co-authored numerous articles on a variety of GI topics. Simply acting as co-author on a particular topic does not mean that a physician recommends that particular procedure for every patient or that they recommend it before more conservative treatments are tried. In my experience, Dr Flores is a fairly conservative physician.

If the Pelletier's sought out a surgeon to perform this procedure against the recommendation of Dr Flores or before more conservative treatments had been tried, that MAY have contributed to the reason(s) why the intake physicians were concerned about the possibility of medical abuse of Justina. Something certainly raised their suspicions.

 

[Linda7NJ]

My child saw Dr Flores several times before he referred us to a doctor and hospital in another state for a procedure not performed at Boston Children's. He is an impressive physician who has authored or co-authored numerous articles on a variety of GI topics. Simply acting as co-author on a particular topic does not mean that a physician recommends that particular procedure for every patient or that they recommend it before more conservative treatments are tried. In my experience, Dr Flores is a fairly conservative physician.



If the Pelletier's sought out a surgeon to perform this procedure against the recommendation of Dr Flores or before more conservative treatments had been tried, that MAY have contributed to the reason(s) why the intake physicians were concerned about the possibility of medical abuse of Justina. Something certainly raised their suspicions.

Ya nailed it. IMO
I'd bet...Dr Flores was against the procedure.
Tons of red flags in this case. I'm thankful Children's put a stop to much of it.
All IMO


Sent from my iPhone using Tapatalk

 

[annahanna]

Thanks Linda7NJ and sweetmom! we are doing very well with some amazing doctors.

sweetmom, i am glad to hear your child is doing better and agree with you in wondering if that could be part of the problem.