DC - Justina gets standing ovation from Congress

[sweetmom]

Those bumps are odd. The photos do show the one on her forehead....I am not sure I see the smaller ones on the bald spot. But photos can be deceptive, depending on how light plays and/or reflects from the subject of the shot.

I do wonder about that bald area, though. If she had alopecia, she would likely have more bald spots, even lose her eyebrows, etc. Trichotillomania (obsessive compulsive hair-pulling) can also create bald spots. But with poor Justina, nothing is ever simple, and we really can only guess what might be the cause. She may have had those bald spots for years, and we only notice them when she wears her hair pulled back tightly. No so much when her hair is loose (and she is much prettier that way, IMO).

A bigger mystery is why the mentions of surgery have been, well, surgically removed from the vigil website. Could it possibly be that she did NOT have surgery, but the family is seeking more sympathy by saying so, and the hospital told them to remove that claim.....IMO, that would be really terrible if the family went that far, and I deeply hope I am wrong to even suggest it.

I don't have a problem with people sending her age-appropriate gifts. But I don't like the idea of people sending money to the family, though, especially since the Justina charity is not registered in Connecticut. Who knows where that money is going: certainly not "to free" Justina. She is back under parental control, sicker than ever, but she is "free."
IMO, she was better off at BCH.

 

[Morag]

I notice from pictures that Justina is wearing a yellow bracelet that says FALL RISK. Perhaps the bumps are a result of a fall?

 

[sweetmom]

I notice from pictures that Justina is wearing a yellow bracelet that says FALL RISK. Perhaps the bumps are a result of a fall?

That's an interesting speculation, but IMO, if the bumps were from a fall, she'd have some bruising in those spots too. I'm thinking the hospital sensibly makes all patients who have problems related to walking wear the Fall Risk bracelet. . . but would that mean she is actually trying to walk again, perhaps after some good PT?
Or maybe the bumps are from some kind of allergic reaction to medication?

 

[annahanna]

I notice from pictures that Justina is wearing a yellow bracelet that says FALL RISK. Perhaps the bumps are a result of a fall?

A fall risk bracelet is pretty standard for a post surgical patient, one on sedating (pain) medications, or one who has not been walking routinely. However, I also wonder if the bumps are from a fall or falls. In the pictures from yesterday, any bruising could have been covered with makeup. Pictures posted today initially appeared to indicate the bumps were gone. However, a closer look at some side views show the bumps are still there, just better covered up with makeup.

I would hope that justina has had daily PT and OT since arriving at Y-NH hospital.

 

[sweetmom]

A fall risk bracelet is pretty standard for a post surgical patient, one on sedating (pain) medications, or one who has not been walking routinely. However, I also wonder if the bumps are from a fall or falls. In the pictures from yesterday, any bruising could have been covered with makeup. Pictures posted today initially appeared to indicate the bumps were gone. However, a closer look at some side views show the bumps are still there, just better covered up with makeup.

Yes, the lumps are still there. And she looks exhausted (or maybe that's the pain meds at work). I'm glad she got her nails done....she really could use some cheering up. I wonder if Justina herself has any idea of what is really wrong with her. IMO, she is like a pawn in a mysterious game, and that is what she needs to be "freed" from.

 

[annahanna]

Yes, the lumps are still there. And she looks exhausted (or maybe that's the pain meds at work). I'm glad she got her nails done....she really could use some cheering up. I wonder if Justina herself has any idea of what is really wrong with her. IMO, she is like a pawn in a mysterious game, and that is what she needs to be "freed" from.

It is a little odd that she does not appear to be on any type of monitoring equipment or IV. She does not even appear to have a hep-locked IV in in case she needs one. I've said it before, but it is very unusual for a hospital to keep someone in-patient for weeks at a time unless they are extraordinarily ill, absolutely can not function outside of the hospital, or need very close monitoring. Justina doesn't look great, but she does not appear to be at death's door either. (Thankfully)

 

[sweetmom]

It is a little odd that she does not appear to be on any type of monitoring equipment or IV. She does not even appear to have a hep-locked IV in in case she needs one. I've said it before, but it is very unusual for a hospital to keep someone in-patient for weeks at a time unless they are extraordinarily ill, absolutely can not function outside of the hospital, or need very close monitoring. Justina doesn't look great, but she does not appear to be at death's door either. (Thankfully)

It is strange, for sure. Now I am wondering if it might have something to do with the need to flush out her digestive system via the cecostomy. If the family was not doing this procedure correctly (and it sounds pretty gross), then an infection might have resulted. Or the tube could have been dislodged. Perhaps if she did have a recent surgery, it was to re-do the cecostomy. But if that happened, I'd expect she would have an IV. Let's face it, we can speculate forever, but without seeing her hospital records, we really do not know.

 

[annahanna]

Curiouser and curiouser. At 4:58am on Thursday 11/20, Reverend Mahoney posted that he was driving to CT that day to meet with Justina and her family. He asked for prayers for her situation to improve and for a clear strategy forward for her medical team. Today (11/21 @approximately 9:00am) he asked for prayers as he met with the Pelletier's and the medical team to discuss moving forward with Justina's medical care. About 2 hours ago (11/21 @ approximately 2:30) he again asked for prayers @ #freeJustina for her transfer to Children's Hospital of Philadelphia to go through.

When I started typing this out, there were messages on Reverend Mahoney's Facebook asking if she had been taken again and why she needed to be freed. Those comments have already been removed. (So I guess you need to consider it my opinion that the questioning posts were there.)

This saga never seems to end.

 

[annahanna]

From spending way too much time in Children's Hospitals, I am pretty confident that something very odd is going on and the "Miracle for Justina" supporters are being given 1/2 a story. In my family's experience, doctors did not talk to us about transferring to another hospital until the receiving hospital was already in agreement. I have never heard of another child who was treated differently when the medical team is suggesting the transfer. The fact that they are waiting for word of acceptance of the transfer indicates to me that the Pelletier's requested the move.

CHOP has one of the leading Mitochondrial Disease programs. It was started by one of the foremost PhD researchers in the field about 4 years ago. Within the past 18 months, they developed a 1 step gene test to identify the specific cause of the suspected mitochondrial disease. One thing that has bothered me throughout this story was that the Pelletiers continually referred to her disease as "Mito" without ever divulging what specific mitochondrial disease she suffered from. Everyone that I know with a child with "Mito" can and will go into detail as to the specific genetic variant that is effecting their child. I have never heard the Pelletiers even come close to identifying her specific disease. Perhaps, if she is transferred to CHOP, they can identify once and for all that he does or does not suffer from a mitochondrial disease and which one. I do suspect that CHOP will decline taking her if her current Yale New Haven doctors do not believe it is "Mito."

I suspect that the Yale doctors are actually trying to discharge Justina to home or move her on to inpatient psychiatric care. I think the family wants her transferred to CHOP. The above is my opinion only.

MOO

 

[jjenny]

In all likelihood her parents don't know what kind of 'mito' she has.
Maybe that's why they want her transferred to a hospital that has mito program.
So it can be identified.

 

[annahanna]

In all likelihood her parents don't know what kind of 'mito' she has.
Maybe that's why they want her transferred to a hospital that has mito program.
So it can be identified.

But jjenny, that is a huge part of the problems that they seem to continue to have. Mitochondrial Disease is not one specific disease, it is a group of diseases. "Mito" is simply an umbrella term. But any patient that had a definitive diagnosis of "Mito" knows specifically what their disease is. It is identified by the genetic testing and the muscle biopsy. If they do not "know what kind of 'mito' she has," then they can not possibly know that she has "Mito". They can believe that she has it, they can suspect she has it, but they can not know that she has it. That is one reason why this story has not made sense to so many people who do have an understanding of Mitochondrial Diseases, and honestly to those who have chronically ill kids.

ETA:
Yale Ne Haven hospital has a well respected Mitochondrial Disease program. It is longer running, and much larger in scope then CHOP's program. They have turned out significant research in the field.

Boston Children's also has a well respected, long running Mitochondrial Disease program. In fact, Dr Korson was trained at BCH. He left there to become the director of the much smaller and less prestigious Tuft's program where he had the freedom to deviate from established diagnostic protocols. This would include diagnosing children without performing all of the necessary testing and diagnosing children whose tests did not necessarily show the expected markers for the disease(s). That more freewheeling attitude toward diagnosis may be part of why the Pelletiers are still having so much difficulty getting Justina to a stable point health wise.

 

[sweetmom]

In all likelihood her parents don't know what kind of 'mito' she has.
Maybe that's why they want her transferred to a hospital that has mito program.
So it can be identified.

But she was originally being treated at Tufts, which did have a mito program at the time (now discontinued and the full circumstances of that have yet to be reported.) So why did Tufts not figure out what kind of mito she had?

But let's remember that her doc there, Dr. Korson, whom the family kept saying had diagnosed her with mito, actually had given her a working or provisional diagnosis, not a definite one. No medical facility to date has given her a definite diagnosis of any mitochondrial disorder, just guesses and speculation.

 

[jjenny]

Mitochondrial disease is not easy to diagnose. So I really don't think every family with mito diagnosis knows what kind of mito their child has. There can be many different mutations.

"Mitochondrial diseases are difficult to diagnose. Referral to an appropriate research center is critical. If experienced physicians are involved, however, diagnoses can be made through a combination of clinical observations, laboratory evaluation, cerebral imaging, and muscle biopsies. Despite these advances, many cases do not receive a specific diagnosis."

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934633

 

[CathyinTexas]

Since the last post here, Rev Mahoney posted that she will be transferred to Children's in Philadelphia.

 

[sweetmom]

Mitochondrial disease is not easy to diagnose. So I really don't think every family with mito diagnosis knows what kind of mito their child has. There can be many different mutations.

"Mitochondrial diseases are difficult to diagnose. Referral to an appropriate research center is critical. If experienced physicians are involved, however, diagnoses can be made through a combination of clinical observations, laboratory evaluation, cerebral imaging, and muscle biopsies. Despite these advances, many cases do not receive a specific diagnosis."

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934633

Yes, it is difficult to pinpoint the exact type of mito a patient has. But IMO, Justina has never received a definite diagnosis of ANY kind of mito, just a "working" diagnosis that may well have been incorrect. And for that matter, we have only the family's say-so that one of her sisters has it...and if she does, it certainly does not seem to have affected her the way Justina is affected. If the sister does, or did, and was successfully treated with vitamins and heart drugs that both raise and lower blood pressure (a very odd combination the family was giving Justina), then the medical world would have heard about it and others would be trying that treatment. IMO, there is no reported evidence of that happening.

But if Justina is transferred to Children's Hospital of Philadelphia, perhaps she will finally get a definite diagnosis, which at this point really would be a miracle for Justina.

 

[sweetmom]

Since the last post here, Rev Mahoney posted that she will be transferred to Children's in Philadelphia.

Where is this posted? I cannot find it on the miracle or the freejustina site. But I do see questions by posters who want more information before they start praying for Justina.

 

[K_Z]

From spending way too much time in Children's Hospitals, I am pretty confident that something very odd is going on and the "Miracle for Justina" supporters are being given 1/2 a story. In my family's experience, doctors did not talk to us about transferring to another hospital until the receiving hospital was already in agreement. I have never heard of another child who was treated differently when the medical team is suggesting the transfer. The fact that they are waiting for word of acceptance of the transfer indicates to me that the Pelletier's requested the move.

I agree with this interpretation. If it were initiated by the docs, it would be a done deal, and the communication would be something like "Dr. XYZ at AB Hospital has accepted her as a patient, but we are awaiting a bed on X day". The docs would have talked about the case extensively, and if they didn't want to "accept" the patient in transfer, there wouldn't be any "waiting" for acceptance. Either the receiving docs feel they can help her, and will accept, or not, during those consultations. They don't hang up the phone and think about it for a few days, lol! Certainly the receiving hospital knows how high profile her case has been-- it's not exactly a secret.

 

[jjenny]

Lets say they requested the move? Is that a crime?
I don't understand what would be the objection to them trying to figure out what exactly is wrong with their child.
Apparently she was accepted. So hopefully somebody can figure it out.

 

[sweetmom]

I agree with this interpretation. If it were initiated by the docs, it would be a done deal, and the communication would be something like "Dr. XYZ at AB Hospital has accepted her as a patient, but we are awaiting a bed on X day". The docs would have talked about the case extensively, and if they didn't want to "accept" the patient in transfer, there wouldn't be any "waiting" for acceptance. Either the receiving docs feel they can help her, and will accept, or not, during those consultations. They don't hang up the phone and think about it for a few days, lol! Certainly the receiving hospital knows how high profile her case has been-- it's not exactly a secret.

It has been a pattern all along: the family took Justina to the Children's Medical Center in Hartford, then withdrew her when they claimed she had the flu but the hospital could not give her a diagnosis. Next was the snowstorm trip to BCH, which was not a direct admission from CCM or Tufts, but rather a decision by the family. As was, apparently, the admission to Yale-New Haven which led to 2 months of hospitalization with no announced diagnosis that her problems are caused by physical disease. And now they apparently are trying to get her into Philadelphia. So she's been treated by 4 excellent, state of the art hospitals for nearly 2 years and there has been no proof of mito. IMO, it seems likelier than ever that those symptoms are related to psychological problems, as BCH believed.

 

[i.b.nora]

rev mahoney's mention of a transfer to Philadelphia is on his Twitter page:

https://mobile.twitter.com/revmahoney

It was yesterday so scroll down a little. I just now found it.