BM did it... she got the diagnosis
DH was on the phone. He tried to call out her lies on family history. Her lying about SS having 2 dislocations. Her coaching SS the whole time! Doctor would say "how does that feel?" Before SS could even answer "That's how you say it hurts, right?" SS didn't even answer... we assume he just nodded. It was surreal listening to the whole thing. I am still shaking.
We emailed the hospital social worker. Asked her to get the genetics results from this past summer stating he didn't have EDS, not even close. This was given to the rheumatologist that said he didn't have EDS.... why not the genetics clinic?? It is the same hospital. We asked her to request records from his PCP showing no dislocations. I know it is all fruitless. BM is going to get him on disability in the next couple of years for sure....
We emailed our lawyer about this too. Now waiting on answers for this and the false restraining order BM is telling people that she has against DH. I just want to cry. DH left for a run.... At least he will be calmer after 7-8 miles....
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I'm sorry. I always feel for
I'm sorry. I always feel for you because your story gives me flashbacks to all that DH tried to do to protect his son, and how hopeful we'd get about each new development ... and how BM always, always got her way.
For me, letting go and accepting my inability to change or control any of it was very helpful.
I hate this feeling.
I hate this feeling.
The doctor said "we have to go with what the mother is reporting" DH: we can't verify with his PCP, because I am sure he has never had a dislocation. Doctor: no, mothers statement is fine
My guess is that BM spoke to
My guess is that BM spoke to this doctor before this appointment and spun a victim tale about DH being abusive, and trying to block SS's medical care, etc, blah blah blah, SS is afraid of him, blah blah, etc ad nauseum.
That's what our BM did, always. She always got there first somehow and turned the narrative her way
This is sickening, I’m so
This is sickening, I’m so sorry. I can’t imagibe stopping so low, nor being the medical professionals allowing themselves to ignore facts & be duped by this kind of bs. It’s horrifying.
I want to escalate this
I want to escalate this within the hospital. I want a board to review this case.
I don't know if it is possible but I am so furious!
Depending on how far I wanted
Depending on how far I wanted to go, I’d be tempted to take it to the media. Why should one parent trump the other like this, and what kind of doctor ignores medical reports in favour of a mothers word?
It’s genuinely horrifying.
Unbelievable. I wouldn't put
Unbelievable. I wouldn't put it past our BM to do something similar but DH got custody of the kids.
BM got a new boyfriend(now husband) who wasnt particularly fond of the 4 little monsters and when they were evicted from one of their many homes that she has been evicted from in the past 5 or so years she decided to not take the kids.
I guess we got lucky that she gave them up. I feel like we would deal with more drama if she still had them and DH got visitation. He saw them probably half the month or more and still paid CS.
Im guessing because of $$$ you will never get custody
Absolutely ask for a hospital review
Get the records and demand a review or you’ll go to the media.
Get the insurance company involved. They won’t want to pay either for a fake illness.
You can raise a lot of noise on this one.
what that doctor did was negligent.
I know you've said BM is
I know you've said BM is trying to get SS disability. Is this a "disability" that would extend child support beyond the date she would otherwise get it? I ask because I wonder if BM told them your DH is trying to prevent the diagnosis because it would affect him financially.
How is this particular thing diagnosed, anyway? I guess I'm wondering how one genetics clinic can say he doesn't have it - not even close - and another one can say he does have it. Is there a definitive test, or is it a judgment call?
I guess the question now is how much of your time and energy do you want to spend on this? You guys do an awful lot and uncover all kinds of information, and somehow you always lose. It's so frustrating.
There is a genetic test for
There is a genetic test for some of the versions of EDS. But not a genetic test for other versions, even though we know it is genetic.
For those others, a clinical judgment is made by tests of joint laxity, a clinical history and medical findings of comorbid conditions (POTS, Mast Cell Disorders being the primary ones but also cardiac valvular disease, a history of ligament injuries and other things).
I know others have said it
I know others have said it but this is classic Munchausen syndrome by proxy. You have to get your lawyer to see this and to threaten the hospital and the Drs with reprecussions if they continue to take the Mothers word for it.
It reminds me so much of Dee Dee Blanchard.
https://en.wikipedia.org/wiki/Murder_of_Dee_Dee_Blanchard
I have EDS
Not all versions of Eds are provable by genetic tests, yet.
Most people with EDS aren't eligible for social security. She may think so but it simply isn't true.
It is wrong to want your child to be sick with something for your own reasons.
However, a diagnosis of EDS can be anywhere from very mild to very severe. There are MANY other symptoms than just stretchy skin and joints.
Many of us don't have any dislocations but we have a lot of partial or mini joint subluxations. I have those.
Most of my issues are blood vessel related, ligament related, GI related, balance related, skin/scar/lesionand neuro and cardio related.
Not (as much) joint related.
I don't think your SS has EDS but I can't know for sure.
Are these docs well known in EDS research circles?
I see some of the top doctors in the world for this specific disorder. It is not something for a general doctor to deal with.
I think you are making an
I think you are making an important point, here, which is that it's not the end of the world that BM "got this diagnosis".
When you are dealing with a BM like this, it feels like a competition and that she has "won" and you have "lost", and it's really easy to catastrophize. Everyone on here already has him on SS disability and BM getting lifetime child support and none of that may happen.
DH also has to be careful not to go in there accusing BM of lying and saying he doesn't have the diagnosis when a doctor has given it to him - it appears then that he's just arguing a point to "win" and not what's best for SS. Truthfully - several doctors have given different points of view, who's to say that BM's doctors aren't right and the ones you took him to aren't wrong, OP?
Be careful not to make this a competition to "win" against BM. I know I fell into that kind of thinking a lot and it's easy to do when BM is in that mindset.
I'd go from here, with OK - doctor say he has this. What does that mean going forward? It does seem that BM has a need to have SS be sick, which is of course, unhealthy, but the more DH fights it, the harder she will fight to get it.
If 3 other doctors, one of
If 3 other doctors, one of them being an EDS specialist within a genetics clinic, didn't all say he doesn't and then this one say he did... if the reason that this one said he did was based on him having " multiple dislocations" which NO doctor has a record of.... if she wasn't answering the doctors questions before SS could respond and them immediately jump to " could this also mean he has juvenile arthritis ?" "What other specialist does he need" etc... I might agree. However, this was the jumping point she needed for a snowball of whatever else she can come up with for him. She already has one kid on disability for EDS and POTS. This is what she needed... If there were actual issues with SS I would be a huge advocate for him getting all the help he needs. This isn't the case though. This is her finding a way for her kids to make her money.
Maybe so. But the bottom line
Maybe so. But the bottom line is that if you guys fall into a "we are right and BM is wrong" mindset about this, it will backfire on you.
Also, Factitious Disorder by Proxy is NOT about using kids as money makers, it's about the parent getting attention and sympathy for having a sick kid, which is a very powerful driver for them.
I'm not saying she's right, I'm just saying - be careful. DH could make himself look very bad here.
Was it your SS that wasn't
Was it your SS that wasn't able to come for his visitation (or full visitation) last summer because he had baseball or some other sport? Will this EDS diagnosis prevent him from doing sports? If so, maybe you'll see more of him in the summer.
Once the diagnosis is made,
Once the diagnosis is made, yes, there should be MANY limitations to his activities. Especially things that can cause joints, ligaments and other connective tissues to maybe stretch too far. Contact sports, stretching (sometimes stretching my arms above my head) and other activities are all risky.
I had a rare foot injury 15 years ago that almost required a partial foot amputation (I have EDS, for real, but wasn't diagnosed yet). I was told it is mostly seen in competitive gymnasts after a hard twist the wrong way on a landing. I was walking my dog.
I'm so sorry that the Dr fell
I'm so sorry that the Dr fell for her lies and deceit.
I think you and your DH need to come to terms with the fact his son is lost, and start looking and putting your famiy unit first.
I don't mean just give up on him, dh should keep the door open and still try to contact ds, still try to convince him to come and visit, but stop all the court cases, stop trying to fight BM as you will not win.
Yes, I agree. I know how hard it
Yes, I agree. I know how hard it is to feel like you are throwing the kid to the wolves, but fighting a hopeless battle will only destroy you guys along with him.
You've read some of your
You've read some of your blogs (your BM is a nightmare) , but don't always keep up with all of them. However I remember some of baseball, the basketball game SS ran away from Dad at and other mentions of physical sport activities this kiddo participates in.
I know very little about what BM is actually trying to (seems to finally succeeded in) diagnosing this kid with, but really don't understand how a kid can pass his sports physicals and play very involved variety of physical sports when BM makes it sound like this poor kid is a breath away being declared decrepit at the ripe old age of 14.
And the BM answering for kid with " that's how you say it hurts, right". WTF. The kid is 14 not 4. He can talk and he can express verbally on his own if this or that hurts and even appropriately rate any pain on a chart scale. I'm really surprised the dr doesn't look at BM and say " I am talking to and asking the child and I would prefer it if the child would answer, especially as it is the child who is actually experiencing the pain if any".
I would bet my paycheck that
I would bet my paycheck that she got there first and told the doctor SS was afraid of his father and would not speak up if he was on the phone. Many professionals believe that stuff without questioning it.
Y'all... This is so freaking
Y'all... This is so freaking hard. I feel like every time that I am about to terms with throwing my hands up and saying F-it, something happens. It is such BS everytime and I get so angry that BM is allowed to do the things she is.
My DH had a really good point this morning though. She claimed that in the last 4 months SS had 2 dislocations. His hip and his shoulder. Now, no doctor has any record of this but I will be in his file at this clinic as part of the reason for his diagnosis. DH wants to ask the lawyer if these "dislocations" that are good enough for an EDS diagnosis are also good enough for medical neglect? They are now recorded as medical history but he never saw a doctor for treatment.
I am also contacting the Rheumatologist this morning that wrote in his letter for the referal that SS does not meet the qualifications for a referal but since the mother is so insistant, he reluctantly agreed to a referal.
The more I think about what happened in the appointment the madder I get. This test for hyper-mobile EDS is based on a Beighton score. There are 9 points of measurement and a score of higher than 4 leads to EDS if there are other factors. She did the 1st measurment (each only equals 1 point) and said we are already at a 5. She included his dislocations as points, bogus family history as points, etc. When DH asked what the points for his 7 score was based on the doctor said it was subjective. DH asked how the Rheumatologist a couple of months ago gave him a 3 and the EDS specialist that we took him to this past summer gave him a 3, yet she gives him a 7. Is there normal rapid deterioration? -- No, she said. She wasn't aware he had been screened before.
It is all so crazy. I just can't let go right now. I know I am just working myself into a straight-jacket but I can't let BM do this to SS.
The Beighton score isn't
The Beighton score isn't subjective, but a doctor can do it wrong.
Either doctor. I was referred by my cardiologist originally who saw some things that seemed EDS-like. He did the Beighton on me and said I scored low (a 5) but enough to be referred.
The genetic specialist did the same test but could pick up on subtle nuances and could "see" it better from experience. I scored a 9.
Your rheumatologist could be wrong. So could this new doctor. Experience is the only thing that matters with this disorder.
Dislocations - no, to medical neglect. Most of us put our dislocations back in ourselves. If they won't go back in then we seek medical care. My hips dislocate on the regular. I have a movement that usually, within 30-120 seconds will usually fix it. But it hurts like a B!tch when it's popped out. It doesn't require medical care if it doesn't need to be forced in by a doctor.
The diagnosis itself isn't "doing anything" to SS. He's the same as he was before.
The truth is, you don't know if he has EDS. One doctor says yes, another doctor says no. You don't know. I don't know. The doctors only know the history that is being told to them.
SSI isn't very much, honestly. A few hundred dollars a month, up to $700 or so I think. Does BM have a history of EDS? How does she know about it?
What other reasons could she have?
What does the GAL say about all this medical stuff?
The problem is, I grew up being told I was exaggerating, had a low pain tolerance and wasn't really sick. I was, I just didn't have the right doctors. Docs who see EDS patients are familiar with the fact that many people do not believe the diagnosis, so they probably are blowing off your husband's concerns.
I don't know if he has EDS. Can you tell me where the clinic was? Is it a major research center or clinic or a local facility? If you google the clinic or doctors name alone, does EDS related research come up quickly?
I messaged you!
I messaged you!
Yes, this is what I was
Yes, this is what I was saying above - it's hard to know. Yes, BM is cuckoo and she's an alienator. But if some doctors say he does and others say he doesn't, if DH goes in yelling about BM being abusive and having Factitious Disorder by proxy, he will look like the angry ex-husband. He needs to at least approach it with - "where do we go from here?" "what specialists can he see?" "how will this affect him?" and not attacking BM. Otherwise he runs the risk of looking like he's everything BM says he is.
Would it be possible....
for DH to e mail these Drs in ONE e mail (so then they would be aware of each other getting the same info) , that he's deeply concerned that there might be some Munchausen's By Proxy going on here? That's what I would be temped to do.