DC - Justina gets standing ovation from Congress

[SeeAlice]

There are different viewpoints about almost everything... I don't think I've been complaining about lack of health updates...? If you ask me they should shut down the website altogether. Justina has been "freed" from Boston Children's, so it's served its purpose and the only thing it's doing now is invading her privacy. It's imo very doubtful that her health is going to improve because she gets attention from strangers by being sick.

I think all those get well cards and prayers and gifts people send and the expressions of undying devotion by total strangers on Justina's FB matter more to her ever-present sister (Jennifer?) and their parents than to Justina. JMO.


That young woman deserves the opportunity to get out and live her own life. I hate to think about what all she is missing out on. Is she still in college? Is she working? Has she been able to move out on her own and live independent of her mom and dad? Those are important milestones in young adults' social and emotional maturation. I really feel sorry for all the daughters in that family.

The staff at the various hospitals they admit her to are capable of monitoring and tending to Justina's health and physical well-being, otherwise, why not keep her at home? There is no need for them to constantly hover over her as if she's about to drop dead. She might even become friends with other patients close to her age and with some of the staff. I think that would be a tremendous benefit for Justina in so many ways.

Maybe I have gotten the wrong impression of them. If so, I apologize and welcome any insight into their family dynamics. Something just doesn't seem right about all of this.

 

[sweetmom]

Wow, that first paragraph really grabs you!

So does this checklist, all of which seems, IMO, to apply in Justina's case:

5 Signs of MSP: How to Spot the Syndrome in Someone You Love


- Child or other potential victim (MBP victims can include spouses, parents, or even pets) tends to always develop signs of illness when alone with mother or other caretaker. Symptoms improve when taken away from the mother.

- Victim's health does not respond to treatments that should be effective.

- There is another child or victim in the family with the same or similar symptoms.

- The mother or caretaker seems overly involved and even obsessed with the potential victim's symptoms and doesn't seem to welcome good news, such as that the child is getting better or doesn't need surgery.

- Mother or caretaker will switch doctors often, seemingly unable to believe or accept that a child may not have a dire illness.

 

[sweetmom]

I have been wondering if Jessica will have a miraculous recovery once she is aged 18-19-20 and can get away from her parents.

The sad thing is that she may never be well enough, physically or psychologically or developmentally, to get away. She will likely be under their care forever.

 

[jjenny]

So here is an article from abc about a little boy whose mother took him to 20 doctors by the time he was 2.5 years old.
I presume based on attitude displayed on this thread his mother would be accused of doctor shopping and all kinds of things.
Yet this child had a rare diagnosis doctors could not figure out, and his mother was only trying to figure out what was wrong with him.

"Reid, then 2 and a half years old, had already been to 20 doctors, but no one could figure out what was wrong with him, and some sent her home without any answers at all, Strauss said. It wasn't just an allergy, autism, a seizure disorder, a gastrointestinal problem or an immunodeficiency. There had to be something else."

http://abcnews.go.com/Health/mothers-intuition-leads-rare-diagnosis-son/story?id=27510756

 

[Hiandmighty]

I sure hope CHOP figures out if Justina has an exceptionally rare disorder (or perhaps a brand new one that will be discovered) because it appears what she doesn't have is Mito.

I am sincere in this. If it isn't Mito, I hope for everyone's sake they find the true diagnosis, if there is one to be found.

 

[jjenny]

I sure hope CHOP figures out if Justina has an exceptionally rare disorder (or perhaps a brand new one that will be discovered) because it appears what she doesn't have is Mito.

I am sincere in this. If it isn't Mito, I hope for everyone's sake they find the true diagnosis, if there is one to be found.

Mito is not one disorder. There are different kinds of mitochondrial mutations. So I don't know why it appears that she doesn't have it. It doesn't appear that way to me.

 

[Hiandmighty]

Well, we know from BCH notes that upon admission to their hospital, she had not had a muscle biopsy, which is necessary for a Mito diagnosis.

We, of course, don't know if she has had one since then.

 

[sweetmom]

Well, we know from BCH notes that upon admission to their hospital, she had not had a muscle biopsy, which is necessary for a Mito diagnosis.

We, of course, don't know if she has had one since then.

Perhaps Yale-NH did one, and it did not show mito. That could be why Lou was quoted in the Courant as saying Yale just did not have "the expertise" to treat Justina and why they decided to move her to CHOP.

So far, neither CT Children's, BCH nor Yale-NH, all highly respected hospitals, have diagnosed her with mito. And even Tufts only went part way, as shown by Dr. Korson himself who was quoted in the Globe as saying mito was just a "working diagnosis" and not conclusively proved. I wonder how soon we'll be hearing from Lou that CHOP "just didn't have the expertise" either.

IMO, it could well be that NO hospital "has the expertise" to treat her for mito, because she does not have it. Even her most rabid supporters ought to at least consider that possibility.

Let me repost the common signs of a Munchausen by proxy (or somatoform) situation, all of which apply to the Pelletier case, IMO:

- Child or other potential victim (MBP victims can include spouses, parents, or even pets) tends to always develop signs of illness when alone with mother or other caretaker. Symptoms improve when taken away from the mother.

- Victim's health does not respond to treatments that should be effective.

- There is another child or victim in the family with the same or similar symptoms.

- The mother or caretaker seems overly involved and even obsessed with the potential victim's symptoms and doesn't seem to welcome good news, such as that the child is getting better or doesn't need surgery.

- Mother or caretaker will switch doctors often, seemingly unable to believe or accept that a child may not have a dire illness.

 

[forthelost]

Mito is maternally inherited, right? If it isn't a spontaneous mutation in one individual? So even if her sister really has mito, I find it odd that Justina doesn't have the same symptoms, and that her other sisters don't appear to have it at all.

 

[sweetmom]

Mito is maternally inherited, right? If it isn't a spontaneous mutation in one individual? So even if her sister really has mito, I find it odd that Justina doesn't have the same symptoms, and that her other sisters don't appear to have it at all.

Right. And her mother apparently does not have it either. Just part of the mystery of it all.
IMO, Justina has a lot of problems: that "congenital band of tissue" around her intestines that may well have been the cause of her problems with moving her bowels that persist to today; some developmental delay issues; the real or perceived inability to walk (altho she was moving around well in that family video in the pool from this summer. The eating issues too: unable to eat before admission to BCH, then getting weaned off the feeding tube while she was there, now being fed by IV, according to the family. All those things are worrisome, but do not prove she has mito.

I hope CHOP finds the definitive answer and treatment for her.

 

[CathyinTexas]

This case could have turned out like many others have, (referring to the story about the 2 year old with a rare diagnosis whose Mom took him to 20 doctors before getting the diagnosis) where doctors call in CPS and accuse the parents of ---something. There are many children and adults now a days who have multiple symptoms/illness that are dismissed. Mito Action wrote a good article about this subject and many adults are treated the same and even told their illness is psychosomatic. We don't hear much, but do hear some about girls whose health deteriorates or even they die after getting the HPV vaccine. I have wondered if Justina had that shot/s and mention it on Miracle of Justina and her sister Jennifer liked my post. I don't know if that is confirmation she did get it or not. I also can understand how people judge this situation as they do, accusing the parents, etc. I think they are just desperate to help their child.

 

[Hiandmighty]

Sure, there is a risk of casting shadow on the parents. If they were in central somewhere.... Someplace where the care was far away with nurse practitioners instead of doctors (my apologies to NP... You know what I mean)... Where teaching hospitals are far away..maybe it's something no one has experienced and can't identify.

They said Harvard didn't have the expertise. It would be laughable if there wasn't a sick child in the middle of it...

 

[i.b.nora]

New photos of Justina (and her dad) meeting Meghan Trainor at the CHOP yesterday.

At the Miracle site.

I had to look up to see who Meghan is.

 

[sweetmom]

This case could have turned out like many others have, (referring to the story about the 2 year old with a rare diagnosis whose Mom took him to 20 doctors before getting the diagnosis) where doctors call in CPS and accuse the parents of ---something. There are many children and adults now a days who have multiple symptoms/illness that are dismissed. Mito Action wrote a good article about this subject and many adults are treated the same and even told their illness is psychosomatic. We don't hear much, but do hear some about girls whose health deteriorates or even they die after getting the HPV vaccine. I have wondered if Justina had that shot/s and mention it on Miracle of Justina and her sister Jennifer liked my post. I don't know if that is confirmation she did get it or not. I also can understand how people judge this situation as they do, accusing the parents, etc. I think they are just desperate to help their child.

There's a difference between a parent searching for help from doctors who are baffled by the child's condition and suggest they keep looking for a diagnosis and parents who get a diagnosis (often the same one) from multiple doctors and hospitals but reject that diagnosis because it does not match up to their preconceived idea of what is wrong.
And there is a huge difference between getting sick AFTER a vaccine shot and getting sick BECAUSE OF a vaccine shot. Just because something bad happens after does not mean it was caused by the earlier thing. That is like saying a man died in a car wreck AFTER having a cup of coffee at breakfast, so coffee killed him. Some research I found on Google from reputable sites shows no studies have evidence that the HPV shot has killed anyone. The loony anti-vaxxers will say anything to try to confirm their paranoia. In fact, the HPV shots have kept many women and girls from developing cancer.

 

[annahanna]

Well, we know from BCH notes that upon admission to their hospital, she had not had a muscle biopsy, which is necessary for a Mito diagnosis.

We, of course, don't know if she has had one since then.

You are correct, we don't KNOW, but I believe it is very likely that Justina did have a muscle biopsy while she was at Boston Children's. Since the parents lost custody due to concerns of medical child abuse and overmedicalization, it makes sense that every effort would be made to determine what was and was not wrong with her. Custody was taken from the parents immediately because there were concerns of immediate harm. However, the court would have wanted to see extensive documentation of Justina's medical situation before making long term custody decisions. The first few Boston Globe articles mention the parade of medical professionals through Justina's room in the early days of her hospitalization. We know from the leaked court ruling that extensive medical and psychiatric records were reviewed by the court. The court likely would have required, and DCF would have authorized any necessary tests to diagnose a Somataform Disorder.

Despite the Pelletier's claims that BCH (and now Yale New Haven) did not have the expertise to diagnose and treat Justina, the United Mitochondrial Disease Foundation does not agree with this assessment. BCH, Massachusetts General, and Yale New Haven (as well as CHOP) are all listed as research centers with laboratories qualified to perform the specialized testing needed to diagnose Somataform Disorders. Interestingly, Tufts is not on that list. (To the best of my recollection, Tufts was not on the list in the past either.)

 

[annahanna]

New photos of Justina (and her dad) meeting Meghan Trainor at the CHOP yesterday.

At the Miracle site.

I had to look up to see who Meghan is.

Is it my imagination or has her hair loss has increased to a disturbing level. That is very concerning.

 

[jjenny]

Is it my imagination or has her hair loss has increased to a disturbing level. That is very concerning.

Not your imagination.

 

[jjenny]

You are correct, we don't KNOW, but I believe it is very likely that Justina did have a muscle biopsy while she was at Boston Children's. Since the parents lost custody due to concerns of medical child abuse and overmedicalization, it makes sense that every effort would be made to determine what was and was not wrong with her. Custody was taken from the parents immediately because there were concerns of immediate harm. However, the court would have wanted to see extensive documentation of Justina's medical situation before making long term custody decisions. The first few Boston Globe articles mention the parade of medical professionals through Justina's room in the early days of her hospitalization. We know from the leaked court ruling that extensive medical and psychiatric records were reviewed by the court. The court likely would have required, and DCF would have authorized any necessary tests to diagnose a Somataform Disorder.

Despite the Pelletier's claims that BCH (and now Yale New Haven) did not have the expertise to diagnose and treat Justina, the United Mitochondrial Disease Foundation does not agree with this assessment. BCH, Massachusetts General, and Yale New Haven (as well as CHOP) are all listed as research centers with laboratories qualified to perform the specialized testing needed to diagnose Somataform Disorders. Interestingly, Tufts is not on that list. (To the best of my recollection, Tufts was not on the list in the past either.)

There are no tests to diagnose a somatoform disorder.

 

[jjenny]

Mito is maternally inherited, right? If it isn't a spontaneous mutation in one individual? So even if her sister really has mito, I find it odd that Justina doesn't have the same symptoms, and that her other sisters don't appear to have it at all.

It's not always maternally inherited.

"Unfortunately, the multiple diseases classified as mitochondrial disorders are inherited in different manners. In fact, nearly every inheritance "model" known has been demonstrated to occur in mitochondrial disease."

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7940911/k.555F/Inheritance__Genetics.htm

 

[Hiandmighty]

Justina, bless her heart, looks awful. Her dad, however, looks great. (Not comparing them... Just discussing the photo). I really hope CHOP gets to the bottom of what is going on here because she looks so bad that I don't see a happy ending for her.