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

[Linda7NJ]

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.

Thank you for sharing and I'm very sorry to hear of your child's difficulties.


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[jjenny]

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.

Her cecostomy surgery was performed in Tufts, where Dr. Flores worked at the time. In other words, Pelletiers didn't seek out the surgeon to perform this procedure against the recommendation of Dr. Flores.

 

[jjenny]

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


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And you'd lose that bet.

 

[CathyinTexas]

Here is what I read earlier today.



http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

Interesting that it is carefully worded that the biopsy "suggested" mito. That is not necessarily diagnostic in a "definitive" way. My understanding is that the muscle biopsy alone is not diagnostic for the disease, as there are other diseases that reveal the same results with either fresh or frozen biopsy. There is lots of discussion about frozen versus fresh biopsies online if one wants to search.

I'm familiar with muscle biopsies because they are used to diagnose a very serious genetic anesthesia disorder, Malignant Hyperthermia Syndrome. For MH, the biopsy is 100% diagnostic.

No, Justina's symptoms were suggestive of mito and coupled with the biopsy confirmation of Jessica's biopsy. Her's was analyzed by two separate entities, and confirmed.

 

[CathyinTexas]

How sad!! Connecticut is definitely a Lyme disease state, and practically everyone I know has had it, or has had it in their family. While this sounds like a possibility for Justina, it's hard to believe that it wouldn't have been considered already. Reading about these debilitating and hard/impossible to definitively diagnose ailments makes me thankful for my own family's continued good health.

. >Reading about Justina's symptoms started me thinking about my cousin's battle with Lyme disease many many years ago.
One day she was thriving, happy, healthy and attending university on a full academic scholarship...she started getting weak, tired...then muscle paralysis... Swallowing difficulties. followed by gibberish talking. Doctors at the local hospital sent her to Children's Hospital in Philadelphia..they contacted Johns Hopkin's and off she went. This was over a period of of years. (5)
She was ultimately diagnosed with Lyme disease....this was before much was known about the neurological impact it could have. She never recovered. They were able to stop the progression. But she now functions at about 8 years of age. <

It is terribly sad what happened to your niece. My grandson regressed into severe autism after his last round of vaccinations at 23 months. He is now 18 and my daughter and her husband received guardianship because he is totally disabled from it. Even though many thousands of parents witnessed the same scenario with their healthy typically developing toddlers the majority of medical professionals go to great lengths to convince the public that there is no connection to vaccinations and autism, or any other debilitating conditions. Lyme, like mito, is becoming much more prevalent and the medical authorities are working very hard to discount them.

 

[annahanna]

Her cecostomy surgery was performed in Tufts, where Dr. Flores worked at the time. In other words, Pelletiers didn't seek out the surgeon to perform this procedure against the recommendation of Dr. Flores.

How do you know where her cecostomy surgery was performed? Is there any publicly available documentation that the surgery was performed at Tufts? (I am not referring to statements made by the family.) Even if it was performed at Tufts - and that has not been established - you do realize that different physicians within the same hospital can and do have different opinions?? Part of what has been alleged in the past is that the Pelletier parents have a history of shopping around until they find the doctor that has an opinion that matches what they want to hear. A concern that they MAY have done that in the cecostomy issue is not far fetched at all in my opinion.

 

[jjenny]

How do you know where her cecostomy surgery was performed? Is there any publicly available documentation that the surgery was performed at Tufts? (I am not referring to statements made by the family.) Even if it was performed at Tufts - and that has not been established - you do realize that different physicians within the same hospital can and do have different opinions?? Part of what has been alleged in the past is that the Pelletier parents have a history of shopping around until they find the doctor that has an opinion that matches what they want to hear. A concern that they MAY have done that in the cecostomy issue is not far fetched at all in my opinion.

Because it was published in msm that her cecostomy surgery was performed in Tufts. In 2012. When Dr. Flores was working there.
I fail to see why a surgeon would perform the surgery if her physician at Tufts was against it. Insurance most likely would not approve it.
In other words, you have no basis whatsoever for your guess, and no evidence.

 

[annahanna]

Because it was published in msm that her cecostomy surgery was performed in Tufts. In 2012. When Dr. Flores was working there.
I fail to see why a surgeon would perform the surgery if her physician at Tufts was against it. Insurance most likely would not approve it.
In other words, you have no basis whatsoever for your guess, and no evidence.

It was published in main stream media that the parents said that the surgery was performed at Tufts. What I asked was if there was independent verification that the surgery was performed at Tufts. As far as I have been able to discover, that evidence has not come to light.

The practice of medicine is an art. As such, there are often differing opinions about the best way to handle a particular issue. It is not at all unusual to find a surgeon that performs a particular surgery who disagrees with a particular doctor about the efficacy of that procedure, They can generally point to other specialists in the field who are proponents of the procedure. Insurance companies will approve or deny a procedure based on the clinical evidence that is presented to them. If there is medical justification for the procedure, most companies will approve it. They do not take a poll of every doctor that has seen the patient in the past to determine their opinion.

Having a child with a rare disorder who has had to have a number of unusual procedures (one of which was recommended by Dr Flores) gives me a basis of knowledge on which to form my opinion or "educated guess". Much of my skepticism of the case comes from the knowledge that a great deal of what the Pelletier family has screamed about @ BCH is directly contradictory to how things are actually done there.

 

[sweetmom]

Thank you for sharing and I'm very sorry to hear of your child's difficulties.


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My thanks to you and AnnaHanna for your kind words. Happily, the problem I wrote about is long gone, and my child is now a fully functioning (in every way!) adult.

I remain deeply curious about the role Dr. Flores did or did not play when Justina was admitted to BCH. He sounds like a good and well-respected doctor who had enough standing to demand to see Justina when she was admitted...if he wanted to remain one of her doctors. Yet all the earlier press reports, mainly quoting the family, said he was "not allowed" to see her. Can this possibly be true? Maybe some of you with healthcare backgrounds can speak to this...

I also am confused about the timeline when Justina was admitted to BCH...some reports claim she was given the somatoform diagnosis within minutes, others say it took 3 or 4 days for BCH to reach that conclusion. Has anyone got a citation that explains which version is correct?

Also, it seems that press coverage of this sad situation has dropped off considerably since Justina was moved to the CT facility. This may be a blessing, as so much of the reporting, as I have noted earlier, was sloppy and amateurish. Let's hope the family can calm down and do what is best for Justina from this point forward.

 

[jjenny]

Justina's father in his interview claims Dr. Flores went in and tried to see Justina but was stopped by a social worker.

 

[jjenny]

It was published in main stream media that the parents said that the surgery was performed at Tufts. What I asked was if there was independent verification that the surgery was performed at Tufts. As far as I have been able to discover, that evidence has not come to light.

The practice of medicine is an art. As such, there are often differing opinions about the best way to handle a particular issue. It is not at all unusual to find a surgeon that performs a particular surgery who disagrees with a particular doctor about the efficacy of that procedure, They can generally point to other specialists in the field who are proponents of the procedure. Insurance companies will approve or deny a procedure based on the clinical evidence that is presented to them. If there is medical justification for the procedure, most companies will approve it. They do not take a poll of every doctor that has seen the patient in the past to determine their opinion.

Having a child with a rare disorder who has had to have a number of unusual procedures (one of which was recommended by Dr Flores) gives me a basis of knowledge on which to form my opinion or "educated guess". Much of my skepticism of the case comes from the knowledge that a great deal of what the Pelletier family has screamed about @ BCH is directly contradictory to how things are actually done there.

Are you accusing the parents of making up where her surgery took place? With no basis for it whatsoever? You don't have any links for your "educated guess."

 

[annahanna]

Are you accusing the parents of making up where her surgery took place? With no basis for it whatsoever? You don't have any links for your "educated guess."

I asked for confirmation from a source other then the parents. I also said that even if it was performed at Tufts that in and of itself did not mean that Dr Flores was in favor of it.

I have told you my basis for what I myself called an educated guess. Perhaps this definition will help you?

dictionary.reference.com/.../educated+gu...
Main Entry: educated guess. Part of Speech: n. Definition: a guess based on knowledge and experience, ...

You obviously have an intractable belief in the parents and their version of events. That is certainly your right but many people including MA DCF, CT DCF, the Guardian Ad Litem, the Court, and a number of doctors do not agree with you. Yes the Pelletier's say that Dr Korson supported them in court and maybe he did but other doctors involved obviously did not.

I have no interest in further engaging in this discussion with you. Have a lovely weekend.

 

[liljim]

despite what some would like to believe - there is no confirmation of her sister having mito, the very doctor that people praise has never claimed that justina has mito, he has very openly said it is a working diagnosis and that he is well aware of the fact that many doctors/institutions would not agree with him, that his methods are not completely agreed upon in the medical community...

yet these people still rant and rave that she absolutely has mito! how dare you question a diagnosis that even the man who provided it has said is less than certain! how dare you!?

 

[liljim]

I asked for confirmation from a source other then the parents. I also said that even if it was performed at Tufts that in and of itself did not mean that Dr Flores was in favor of it.

I have told you my basis for what I myself called an educated guess. Perhaps this definition will help you?

dictionary.reference.com/.../educated+gu...
Main Entry: educated guess. Part of Speech: n. Definition: a guess based on knowledge and experience, ...

You obviously have an intractable belief in the parents and their version of events. That is certainly your right but many people including MA DCF, CT DCF, the Guardian Ad Litem, the Court, and a number of doctors do not agree with you. Yes the Pelletier's say that Dr Korson supported them in court and maybe he did but other doctors involved obviously did not.

I have no interest in further engaging in this discussion with you. Have a lovely weekend.

it has been very clear from the start that many people made their minds up right from the first article they read about this case and would not be dissuaded by any information that they might learn... its sad. and not uncommon at all.

 

[sweetmom]

Justina's father in his interview claims Dr. Flores went in and tried to see Justina but was stopped by a social worker.

It seems hardly credible that a social worker could overrule a staff physician. Since the family is prone to exaggeration..."Justina was kdinapped! Justina was harassed! Justina is at death's door! .... I choose not to take his word for anything related to the events at BCH. But if there is any objective confirmation of what he said, I would be happy to hear it.

 

[Linda7NJ]

I'm holding my breath hoping Lou & Linda can maintain....


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[i.b.nora]

They gave Justina a surprise birthday and a number of her girlfriends were there to see her for the first time in many months. There is a short video at the miracle for justina facebook page.

 

[jjenny]

They gave Justina a surprise birthday and a number of her girlfriends were there to see her for the first time in many months. There is a short video at the miracle for justina facebook page.

She turned 16 today. I don't believe she saw any of her friends for 15 months she was kept in MA. I don't think she saw much of the sunlight either. She looks very pale. They need to do a blood test for vitamin D. I bet it's low.

 

[sweetmom]

She turned 16 today. I don't believe she saw any of her friends for 15 months she was kept in MA. I don't think she saw much of the sunlight either. She looks very pale. They need to do a blood test for vitamin D. I bet it's low.

Let's remember that Justina would have been returned to CT, per the recommendation of BCH, to a facility about 20 minutes from the Pelletier home LAST JUNE, a full year ago, if the family had agreed to the placement. This info is in the judge's report and has been quoted in various stories since.

But the family did not, claiming as a (imo) very lame excuse that they had heard it was once an orphanage, which even if true had nothing to do with the services it now offers. Sometime later they decided the facility was OK, but by then the place was no longer interested in working with them. So if Justina has not seen her friends for 15 months, it's largely because her parents made a bad choice and she has suffered because of it.

As for her paleness, unless you knew her before and saw her in person then and now, it's really hard to judge how naturally pale her skin may be. The lighting used in making photos and videos can be misleading to the viewer.

 

[annahanna]

I'm holding my breath hoping Lou & Linda can maintain....


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According to this report on the most recent protest for Justina, the parents have a meeting with DCF and the doctors from Tufts this coming Friday. I too hope they can keep their cools and the meeting goes well for justina's sake.
http://www.myfoxboston.com/story/25605854/hundreds-gather-to-protest-for-justina-pelletier