Facebook post about a child with untreated medical problem...
May 20, 2015 3:25 AM Subscribe
Someone I don't know posted something to a private Facebook group I'm in about their two year old with a medical problem (Phenylketonuria) going untreated. Permanent brain damage could result... probably already has, sadly, and it will get worse the longer she goes without treatment.
I'm haunted by the thought of this poor little girl. Is there anything I can or should do at this point?
They said the child was refusing to drink their medical formula, had not been treated for four months, hair now changing color and falling out, blood phe levels dangerously hifh. The person got lots of replies (including from me) begging them to do whatever it took to get this child treatment, offering help. And a couple of replies mentioning social workers and CPS. Now the post has been deleted along with, as far as I can tell, the poster's whole Facebook account. I don't know whether I should somehow report this, and if so, to whom? And how?
They said the child was refusing to drink their medical formula, had not been treated for four months, hair now changing color and falling out, blood phe levels dangerously hifh. The person got lots of replies (including from me) begging them to do whatever it took to get this child treatment, offering help. And a couple of replies mentioning social workers and CPS. Now the post has been deleted along with, as far as I can tell, the poster's whole Facebook account. I don't know whether I should somehow report this, and if so, to whom? And how?
Response by poster: I have a name and a screenshot of the original post, though not the follow up comments that gave more detail. PKU is rare enough that knowing the state these people are in would probably be enough to figure out who their doctor is.. and I'm frustrated because I checked what state she was in on her profile before it was deleted! But I've forgotten (execpt that it wasn't mine, and I'm pretty sure she was in the US.) Still, a name and the fact that they go to a PKU clinic would probably be enough for someone to find them, especially if Facebook would help. But who is "someone"? There's no federal CPS, is there?
posted by OnceUponATime at 4:12 AM on May 20, 2015
posted by OnceUponATime at 4:12 AM on May 20, 2015
Best answer: You could ask on the site if anyone else knows where they are located.
If that doesn't work you could call your local CPS and ask for help with what to do.
posted by flourpot at 4:29 AM on May 20, 2015 [3 favorites]
If that doesn't work you could call your local CPS and ask for help with what to do.
posted by flourpot at 4:29 AM on May 20, 2015 [3 favorites]
I hate to be cynical but do you have any reason to believe this story is, you know, real? Posting that story sounds exactly like what a malicious troll would do, hoping to whip up strangers into a state of impotent alarm and panic for the poor child. Unless you have more corroboration than just this stranger's post, I would just write it off as something that may not be/probably isn't even true.
posted by jayder at 5:17 AM on May 20, 2015 [3 favorites]
posted by jayder at 5:17 AM on May 20, 2015 [3 favorites]
In my haste to express my skepticism I didn't see that billie bee had expressed similar sentiments. anyway, it definitely triggered my "kaycee nicole much?" internet b.s. detector.
posted by jayder at 5:22 AM on May 20, 2015 [4 favorites]
posted by jayder at 5:22 AM on May 20, 2015 [4 favorites]
Response by poster: I can't prove that it's real, but I believe it. The Facebook group is a PKU support group. My kids also have PKU, and there are details in the post that I don't think someone with no connection to this rare disease would know. Brand names for the medical formulas, blood test results that make sense in context, quotes from dieticians, etc. If they don't have a two year old with PKU, I believe someone in their life does have it. You don't get those details from Wikipedia.
posted by OnceUponATime at 5:45 AM on May 20, 2015
posted by OnceUponATime at 5:45 AM on May 20, 2015
I would forward your screen shot, plus whatever you know, to CPS. Unfortunately, there isn't much else you can do.
posted by anastasiav at 5:50 AM on May 20, 2015
posted by anastasiav at 5:50 AM on May 20, 2015
Someone I don't know posted something to a private Facebook group I'm in about their two year old with a medical problem (Phenylketonuria) going untreated.
In case this makes you feel any better, there's something inherently implausible about this scenario. Why would someone care enough about the PKU their child has to be posting about it on an internet forum, but not care enough to seek treatment for the child's PKU? That just doesn't make sense to me. It sounds like typical sadistic internet troll looking to rattle people. I mean, why do parents have Munchausen by proxy syndrome? Why did that person come up with Kaycee Nicole? Holdkris? etc etc etc.
In my brief forays into medical fora on the internet, I have concluded there are some very mentally sick people who gravitate there.
posted by jayder at 6:45 AM on May 20, 2015 [4 favorites]
In case this makes you feel any better, there's something inherently implausible about this scenario. Why would someone care enough about the PKU their child has to be posting about it on an internet forum, but not care enough to seek treatment for the child's PKU? That just doesn't make sense to me. It sounds like typical sadistic internet troll looking to rattle people. I mean, why do parents have Munchausen by proxy syndrome? Why did that person come up with Kaycee Nicole? Holdkris? etc etc etc.
In my brief forays into medical fora on the internet, I have concluded there are some very mentally sick people who gravitate there.
posted by jayder at 6:45 AM on May 20, 2015 [4 favorites]
There may be sick individuals who post munchausen by proxy type posts on the internet, but there are also a host of children with complex medical issues in the world who are not necessarily getting the care they need. If it were me, I would contact your local CPS to make a report and pass along any identifying information you have. They are tasked with tracking down cases across state lines. You know the outcome with untreated PKU and it is better to try to intervene if there is a chance this is happening.
posted by goggie at 6:56 AM on May 20, 2015 [1 favorite]
posted by goggie at 6:56 AM on May 20, 2015 [1 favorite]
Response by poster: The gist of the post was "my child won't drink her formula. Any tips on how to make her drink it?" Like she was trying to conply with the treatment plan. But she didn't seem to understand the urgency. Four months without formula for a one or two year old with PKU could, I think, be enough to cause permanent intellectual disability. They should've tried other formulas, other feeding methods, a stomach tube if absolutely necessary.
I wil contact my local CPS and provide what information I have. Thanks, everyone.
posted by OnceUponATime at 7:19 AM on May 20, 2015
I wil contact my local CPS and provide what information I have. Thanks, everyone.
posted by OnceUponATime at 7:19 AM on May 20, 2015
Best answer: Contacting CPS is a good idea. Could you also send the screenshot and as much other information as other groupmembers were able to gather before the deletion along with a quick explanation to your own PKU doctor/other group members' PKU doctors?
posted by Don Pepino at 7:35 AM on May 20, 2015 [2 favorites]
posted by Don Pepino at 7:35 AM on May 20, 2015 [2 favorites]
Response by poster: Called CPS, was told they only handle cases in my county, and the only thing I can do is try to find out where they live and call local CPS there. I'll ask on the group, but I'm not optimistic. So sad and frustrating. I just hope all this put a sense of urgency into the parents to get better treatment, rather than scaring them away from medical and support services altogether.
posted by OnceUponATime at 8:26 AM on May 20, 2015 [1 favorite]
posted by OnceUponATime at 8:26 AM on May 20, 2015 [1 favorite]
The person got lots of replies (including from me) begging them to do whatever it took to get this child treatment, offering help. And a couple of replies mentioning social workers and CPS.
Okay, I promise this is my last comment. Do you have any reason to believe that the person disregarded the advice that you and others provided? I mean, the person had the wherewithal to post the question on the forum, you and others begged/implored them to do things ... so why do you think this is urgent, at this point? Why do you believe your advice was unheeded? I don't mean to harp, but I feel you are unnecessarily alarming yourself. Unless you have some reason to believe that this person (if they are on the level) is completely incompetent, I am not sure why you are so adamant that state intervention is required here when they were already sort of showing some degree of competence by making the forum post.
This is more just to alleviate your concerns and help you stop worrying, since you say you are haunted by this. As a sensitive person it is easy to worry yourself sick over things, assuming the worst about others, but often I think things work out better than you would expect.
posted by jayder at 9:33 AM on May 20, 2015 [3 favorites]
Okay, I promise this is my last comment. Do you have any reason to believe that the person disregarded the advice that you and others provided? I mean, the person had the wherewithal to post the question on the forum, you and others begged/implored them to do things ... so why do you think this is urgent, at this point? Why do you believe your advice was unheeded? I don't mean to harp, but I feel you are unnecessarily alarming yourself. Unless you have some reason to believe that this person (if they are on the level) is completely incompetent, I am not sure why you are so adamant that state intervention is required here when they were already sort of showing some degree of competence by making the forum post.
This is more just to alleviate your concerns and help you stop worrying, since you say you are haunted by this. As a sensitive person it is easy to worry yourself sick over things, assuming the worst about others, but often I think things work out better than you would expect.
posted by jayder at 9:33 AM on May 20, 2015 [3 favorites]
Thanks so much for the update.
"I just hope all this put a sense of urgency into the parents to get better treatment, rather than scaring them away from medical and support services altogether."
Yes, it's frustrating because you don't know and it could go either way--people scared out of their minds sometimes don't make the most rational choices. (I mean, assuming this is a real person and not a facebook Munchausen troll.) Most likely, even in the unfortunate scenario where the parent heard "CPS" and panicked and went into blind flight mode, that state of mind wouldn't last long. It's just not practical. They'd have to work harder to not treat their child than to treat their child because the child's growing disability would start to become evident to everybody around. Are they going to go on the lam just so they can keep destroying their toddler? Unless they are movie monster parents, this is unlikely.
I don't think you're overreacting, here, because the potential worstcase outcome is so horrible that even if the probability is small that this thing is even happening, it's worth doing something if anyone can come up with something to do. But I also agree with everybody in here pointing out that this might not be happening at all and that if it is, the likelihood that the parents will just let it keep happening is very small. If I were you, I'd make one more post to the facebook group about this in case someone has an idea; fax that screenshot to your PKU doctor; light a candle for the potentially actual suffering child; and OSWAT (Officially Stop Worrying About It).
posted by Don Pepino at 10:21 AM on May 20, 2015 [2 favorites]
"I just hope all this put a sense of urgency into the parents to get better treatment, rather than scaring them away from medical and support services altogether."
Yes, it's frustrating because you don't know and it could go either way--people scared out of their minds sometimes don't make the most rational choices. (I mean, assuming this is a real person and not a facebook Munchausen troll.) Most likely, even in the unfortunate scenario where the parent heard "CPS" and panicked and went into blind flight mode, that state of mind wouldn't last long. It's just not practical. They'd have to work harder to not treat their child than to treat their child because the child's growing disability would start to become evident to everybody around. Are they going to go on the lam just so they can keep destroying their toddler? Unless they are movie monster parents, this is unlikely.
I don't think you're overreacting, here, because the potential worstcase outcome is so horrible that even if the probability is small that this thing is even happening, it's worth doing something if anyone can come up with something to do. But I also agree with everybody in here pointing out that this might not be happening at all and that if it is, the likelihood that the parents will just let it keep happening is very small. If I were you, I'd make one more post to the facebook group about this in case someone has an idea; fax that screenshot to your PKU doctor; light a candle for the potentially actual suffering child; and OSWAT (Officially Stop Worrying About It).
posted by Don Pepino at 10:21 AM on May 20, 2015 [2 favorites]
Got nothing practical to add - just hope this is a fake thing because I've watched consequences of someone who didn't get kids tested and by the time they realized what they were dealing with it was a tragic situation - many years ago.
posted by leslies at 4:16 PM on May 20, 2015
posted by leslies at 4:16 PM on May 20, 2015
You know, if this disease is very rare, the doctors who treat it probably know each other/are in touch with one another/etc, even nationwide. I wonder if there's some way for your doctor to get this post out to that community and hopefully the family's doctor recognizes their patient and can reach out to help. Since this isn't your doc's patient, I would think there's no issue of confidentiality. Could the screencap be posted somewhere linkable but not googlable and your doc could send out a link to their listserv or whatever?
posted by If only I had a penguin... at 9:13 PM on May 20, 2015
posted by If only I had a penguin... at 9:13 PM on May 20, 2015
My kids also have PKU, and there are details in the post that I don't think someone with no connection to this rare disease would know. Brand names for the medical formulas, blood test results that make sense in context, quotes from dieticians, etc. If they don't have a two year old with PKU, I believe someone in their life does have it.
I have no real reason to say the posting wasn't legit - I only have the foggiest idea of the full context. I will point out though that most of these details are on the Internet and wouldn't be too hard to fake if someone really wanted to.
posted by atoxyl at 1:20 AM on May 21, 2015
I have no real reason to say the posting wasn't legit - I only have the foggiest idea of the full context. I will point out though that most of these details are on the Internet and wouldn't be too hard to fake if someone really wanted to.
posted by atoxyl at 1:20 AM on May 21, 2015
I'm so sorry.
Something very similar happened with my niece. (Parents anti-vaxxers, anti-doctors, niece fell ill, they were putting undiluted essential oils directly on her 3-month-old skin and not responding to active listening nor any gentle suggestions. This is A Thing that goes back generations in both my family and my SIL's family, so. Sigh.) CPS could do nothing since I'm not directly in contact with them – different country. Other family members were witnessing the same thing yet refused to contact CPS. (religion. they believed God's will was being done. [feel free to imagine my rage in this space.])
How I dealt with it: I let go. That is so much easier to write than to do. But in this case, it is the only thing left that you can do. Let go. Find distance. Some people are shits, and treat their children like shit. You've done what you could.
Other things you can do are to talk about it. I find a lot of solace in talking with fellow compassionate people, and discussing the value of compassion, of listening, of caring for others. When appropriate I'll share that, "yeah, you want to help that neighbor kid in a bad situation – that's great, you could indeed," and in some way I hope that's a flap of a butterfly wing that may someday reach my little niece on the other side of the world. Enough people valuing compassion and reaching out to others, that someone someday in a position to help her, will.
Thank you for being one of those kinds of people.
posted by fraula at 4:35 AM on May 21, 2015
Something very similar happened with my niece. (Parents anti-vaxxers, anti-doctors, niece fell ill, they were putting undiluted essential oils directly on her 3-month-old skin and not responding to active listening nor any gentle suggestions. This is A Thing that goes back generations in both my family and my SIL's family, so. Sigh.) CPS could do nothing since I'm not directly in contact with them – different country. Other family members were witnessing the same thing yet refused to contact CPS. (religion. they believed God's will was being done. [feel free to imagine my rage in this space.])
How I dealt with it: I let go. That is so much easier to write than to do. But in this case, it is the only thing left that you can do. Let go. Find distance. Some people are shits, and treat their children like shit. You've done what you could.
Other things you can do are to talk about it. I find a lot of solace in talking with fellow compassionate people, and discussing the value of compassion, of listening, of caring for others. When appropriate I'll share that, "yeah, you want to help that neighbor kid in a bad situation – that's great, you could indeed," and in some way I hope that's a flap of a butterfly wing that may someday reach my little niece on the other side of the world. Enough people valuing compassion and reaching out to others, that someone someday in a position to help her, will.
Thank you for being one of those kinds of people.
posted by fraula at 4:35 AM on May 21, 2015
This thread is closed to new comments.
If you gave them advice at the time to get treatment for the child then it feels like you did the best you could with the information available to you. Have you also considered that perhaps the story wasn't true, or do you have proof that they had a sick child? I'm not sure from your post. Sometimes people write things for attention and then get too much attention - lots of replies and advice and maybe people contacting them privately to tell them to act - and then panic and back off (or close their account). I'm not saying that's what happened here but it might be something to consider if you're really stressed about it. It's hard to feel helpless if you think someone is in danger, but from what you've posted I don't see what else you can do or could have done, sorry.
posted by billiebee at 3:57 AM on May 20, 2015 [3 favorites]