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Thursday, February 05, 2009

MUNCHAUSEN BY INTERNET: FAKING ILLNESS ONLINE by Marc D. Feldman

I just wanted to share some information with you all to protect yourselves.

The following article is from this link - http://www.selfhelpmagazine.com/articles/chronic/faking.html

NY Times also has an article on this - http://query.nytimes.com/gst/fullpage.html?res=9F0DE3D7163FF930A15757C0A96E958260&sec=&spon=&pagewanted=print

MUNCHAUSEN BY INTERNET: FAKING ILLNESS ONLINE by Marc D. Feldman

Online Support for People with Illness

The Internet is a medium of choice for millions of people who need health-related information. Medical websites have multiplied exponentially over the past several years. Thousands of virtual support groups have sprung up for those suffering from particular illnesses. Whether formatted as chat rooms, as newsgroups, or in other ways, they offer patients and families the chance to share their hopes, fears, and knowledge with others experiencing life as they are. These online groups can counter isolation and serve as bastions of understanding, deep concern, and even affection.

Unfortunately, cyberspace resources are sometimes deliberately misused by people intent on deceiving others. False product claims in spam are perhaps the best-known example. But even in the relative intimacy of health support groups, individuals may choose to mislead others by pretending to have illnesses they do not. They divert the attention of the group toward their feigned battles with cancer, multiple sclerosis, anorexia nervosa, or other ailments. The eventual discovery of the deceptions can be devastating. One group member called it "emotional rape" to have cared so deeply about a person who lied to her and others from his first post on.

Munchausen by Internet

For decades, physicians have known about so-called factitious disorder, better known in its severe form as Munchausen syndrome (Feldman & Ford, 1995). Here, people willfully fake or produce illness to command attention, obtain lenience, act out anger, or control others. Though feeling well, they may bound into hospitals, crying out or clutching their chests with dramatic flair. Once admitted, they send the staff on one medical goose chase after another. If suspicions are raised or the ruse is uncovered, they quickly move on to a new hospital, town, state, or in the worst cases — country. Like traveling performers, they simply play their role again. I coined the terms "virtual factitious disorder" (Feldman, Bibby, & Crites, 1998) and "Munchausen by Internet" (Feldman, 2000) to refer to people who simplify this "real-life" process by carrying out their deceptions online. Instead of seeking care at numerous hospitals, they gain new audiences merely by clicking from one support group to another. Under the guise of illness, they can also join multiple groups simultaneously. Using different names and accounts, they can even sign on to one group as a stricken patient, his frantic mother, and his distraught son all to make the ruse utterly convincing.

Clues to Detection of False Claims

Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factititous Internet claims. The most important follow:

1. the posts consistently duplicate material in other posts, in books, or on health-related websites;

2. the characteristics of the supposed illness emerge as caricatures;

3. near-fatal bouts of illness alternate with miraculous recoveries;

4. claims are fantastic, contradicted by subsequent posts, or flatly disproved;

5. there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;

6. there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;

7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.

Lessons

Perhaps the most important lesson is that, while most people visiting support groups are honest, all members must balance empathy with circumspection. Group members should be especially careful about basing their own health care decisions on uncorroborated information supplied in groups. When Munchausen by Internet seems likely, it is best to have a small number of established members gently, empathically, and privately question the author of the dubious posts. Even though the typical response is vehement denial regardless of the strength of the evidence, the author typically will eventually disappear from the group. Remaining members may need to enlist help in processing their feelings, ending any bickering or blaming, and refocusing the group on its original laudable goal.

References: Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672 Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausen by proxy. Western Journal of Medicine, 168, 537-539 Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley & Sons

Making Our Blogs Completely Private Very Soon

Dear all,

This is just a heads-up. I will be making this blog and our wordpress blog completely private very soon. It is very unfortunate but it has come to my attention that someone has stolen one of Isaac's picture and is using it on a board saying that it is a picture of her daughter. Okay first of all, I hope Isaac is not insulted because someone is passing him off as a girl. Secondly, its kind of funny because this person and her husband are supposedly white and pretty blond and she decided to steal the picture of an Asian boy to use as her daughter's picture. Finally, the picture she stole is from my avatar and on the right hand side there is a yellow tag that says "stomach" in Chinese character. The tag was to indicate the NG tube when Isaac was in NICU in JAPAN. It would be impossible to find a tag like that in a NICU in the US or some other Western countries.

I have been thinking of making our blogs private for a while but when I last seriously thought about it, someone found our blog after his wife who was pregnant with twins and started leaking water and I was able to help this family a little. So I thought may be God wanted me to leave the blog open to help others. However, I think its time for me to shut this down from the public eye. If I am able to figure out how to load all of my posts on this link onto a different blogger blog keeping our videos intact (I wasn't able to keep our videos intact on our new wordpress blog), I will move the contents over to the new blog and make this blog public again after delete my blog entries on here except for a general description of what we went through and include some helpful links for others to find.

Thank you so much for all of your prayer and support for us. If you would like to continue to view our blog, please email me at rachelandisaac@gmail.com.

Also, if you do see any of our images being misused or stolen anywhere else, I would really appreciate it if you would notify us as well.

p.s. I am keeping everything up for another day or so to allow the administrators of the board on which Isaac's picture was misused to verify my story and will then make everything private.

Take care and God bless,

Sonia

Thursday, October 30, 2008

We are moving over to WordPress!

Dear all,

I am taking the plunge and moving over to WordPress. I will keep all these posts up on here but have also uploaded them on our new WordPress page. One of the main reasons we are moving over is because I can make some (but don't need to make all) posts private.

Please visit us at http://soniaandjong.wordpress.com/

By the way, I finally posted some pictures from our US trip up on our WordPress page and should be loading up Halloween pictures tomorrow night!

Sonia

Wednesday, October 22, 2008

Finally, update re Isaac's appointments in the US

Dear all,

Sorry it took me so long to update. Jet lagged kicked me in the behind all week last week and things have been crazy this week. We are going through some big life changes that will happen towards the end of this year so things have been even more crazy as usual.

Anyway, Isaac's evaluation went quite well. It seems like the occupational therapy and physiotherapy he has received have really helped him. I have put physiotherapy temporary on hold right now as we are still trying to get our insurance company to approve coverage of all of his therapy. I figured he needs occupational therapy more than his physiotherapy right now so we have continued with occupational therapy despite the risk that we may not get reimbursed for those sessions. In any case, I digress. His fine and motor skills are slowly catching up. As expected, he is very, very behind in speech as he is still basically non verbal. He was rated at 12 months for speech.

We also checked his eyes out and were relieved to receive confirmation that his myopia is still mild so he probably won't need glasses for a year or two.

We were, however, a bit surprised to find out that he has suffered most likely permanent hearing loss. We actually didn't think he needed his hearing checked as his doctors here didn't think he needed it. However, because his speech has been so delayed, I thought I should get his hearing checked just in case. So thank the Lord we did. However, since Isaac wouldn't keep headphones on, we were not able to get precise results so the pediatric audiologist recommended that Isaac gets ABR testing done before he gets fitted with hearing aids. We are still trying to figure out whether we can go back to the US to get this done or not. If anyone has any experience with ABR testing and having their toddler fitted with hearing aids, I would love to hear about your experience. I am trying to figure out whether it is possible to do the ABR testing and get Isaac fitted with hearing aids within about a week. This is because if I were to go back to the US to get this done, I would go with Isaac alone (without Abigail) and I don't want to leave her for too long.

So all in all, it was a very good visit for us. Although I was a little sad to find out that our little boy will probably need to use hearing aids for the rest of his life, I am glad to find out perhaps one of the reasons why he is so speech delayed. In addition, as I say all the time, things could have been so much worse for him, this is really don't that big a deal in the scheme of things. One thing I am curious about is when he does need glasses, how we can fit glasses on top of hearing aids (when kids are still growing, the hearing aids will have the plastic tubing on them so that they don't have to get new hearing aids fitted all the time as their ears grow bigger).

Isaac began speech therapy last week after we returned from the US. So far, Isaac has not been cooperative at all during speech therapy as he refuses to make any sounds. So the sessions have seem to be very ineffective to me as a layman. I guess we will see if he makes any progress after a few more sessions.

On another front, Isaac seems to be a teeny little bit more adventurous with what kind of food/texture he is willing to put in his mouth. He ate his first grape this week. He has never been able to chew and swallow grapes. He has put grapes in his mouth but he would spit it back out. This just happened yesterday though today he put it in his mouth and spit it back out but I still think its progress. Plus he is now willing to eat spinach without it being pureed though he likes using his heads and picking up the spinach stems (funny boys doesn't like the leaves) and putting them in his mouth like he is trying to eat noodles with his hands. Unfortunately we also discovered that he is mildly allergic to olive oil. He was eating my spinach yesterday which was stir fried with olive oil. After eating a bunch of them, the skin around his mouth got red and blotchy. Actually, this isn't really a new discovery. He had a skin reaction over a year ago when I added olive oil to his baby food and it got on his face as well. We stopped giving him olive oil after that so now I guess we confirmed the allergy. I think being allergic to olive oil is very, very rare so this was suprising. Jong is now wondering may be Isaac's food aversions might be partly related to allergies we may not have discovered yet. So if Hallie's mom is reading this, how did you discover what Hallie is allergic to? I mean, Isaac doesn't throw up his food. He has been tested for some allergies - some nuts, shellfish, etc. and he didn't seem to be allergic to anything except for peanuts and now olive oil?

Well, unfortunately, my head is killing me right now so I will sign off for now. I will try to put some pictures on later.

Take care,

Sonia

Monday, October 13, 2008

We are back from the US

We went to California for a week and just got back last night. We are all very jet lagged right now so I will write an update in the next few days. Isaac got a full developmental evaluation at CHOC and also got his hearing and his eyes checked out. It was Abigail's first time to meet her paternal grandmother, grandfather and uncle as well.

Anyway, for now, I will post a very cute video of Abigail in the jumperoo today. She LOVES her jumperoo these days and didn't get to be in one for a full week. Both kids are very happy to be home.

Wednesday, September 24, 2008

Blessed Be Your Name

I don't know what it is like for those of you who are healing from the grief of losing someone you love dearly, but its very easy for Jong and I to cry while singing praises to our Lord. Well, this was the first song we sang this past Sunday so we got started early this Sunday! The part in bold really gets to us (in a good way).



Blessed Be Your Name
by Matt Redman
- - -
Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

Wednesday, September 10, 2008

Isaac's growth

Isaac had a check up at St. Luke's Hospital today so we have a new set of measurements:

Weight: 11.51 kg
Height: 86.5 cm

I came home and immediately checked to see where he is on growth charts. I am so happy he is actually ON both growth charts now - based on both his adjusted age AND TADA his actual age!!! Plus this is a US growth chart and Isaac is ethnically Asian so I think he is doing okay!

Please see for yourself!

(Please click on the charts to see a bigger version)
Growth chart based on his adjusted age:

Growth chart based on his actual age:

I also tried out one of those height predictor sites. The problem is I am not sure if we are supposed to be going on his actual birthday or his adjusted birthday. If we go by his actual birthday, his height is predicted to be only 5'6" but if we go by his adjusted age, his height is predicted to be 5'10"! I sure hope we are supposed to go by his adjusted age!

Sonia

Tuesday, September 09, 2008

Abigail's first attempt at solids plus some sibling pictures

We tried giving Abigail a little bit of rice cereal tonight. Since daddy isn't home to see this, here is the video!



Here are also some pictures. Usually Isaac is not that interested in Abigail but we got him to kiss her. :)
And here is one to show off Isaac's and Abigail's cool ride (its the Doubles Vibe from Phil and Ted's, a Kiwi maker).
Sonia