Sunday, July 6, 2008

OCD and My Thin Skin

First off, I am thankful to those of you who have stuck around. It has been a crazy time in our house. Between doc visits and out of town guests, we all haven't slowed down since school let out at the end of May. I am going to be around much more now that our chaotic life is calming down a bit.

Now on to my good news...

For those of who need to be brought up to speed: Our daughter has very severe OCD. Her compulsions have ranged anywhere from counting objects, harming her brother, breaking things, all the way up to harming herself. Her most recent battle has been skin picking, which has been going on for over a year. Her psychologist worked with her and finally suggested that we see a pyschiatrist for meds. It took quite some time to find the right mix. She ended up on Zoloft and Resperdal. Her psychiatrist only wanted her on the Resperdal for a short time but she has been on it for almost a year because the skin picking was out of control.

At the worst part of her ordeal she had over 100 open sores. We really thought that she would never be able to stop. Medicine wasn't helping, cognitive behavior therapy wasn't helping, rewards weren't helping... nothing. Then she was getting ready to go on an overnight trip with Girl Scouts and we were afraid they may not let her in the pool because of the sores. She fought her OCD very hard and was able to stop picking long enough that they open sores turned to scabs. She went on the trip and had a blast.

Well, her psychiatrist was now convinced that there had to be some sort of congitive behavior therapy that would work. He had us go back to her previous psychologist and ask her to work with Paige.

The psychologist gave Paige a rubber band to wear around her wrist and told her to snap it whenever she felt the urge to pick. I was very leary because Paige likes pain. I was worried that she would snap the rubber band excessively, causing welts. The psychologist said that it was ok if she caused pain. She said that Paige has to replace the pain felt during skin picking with another pain, in order to surpress the compulsion.

At the start of the program Paige had over 40 open sores (and over 100 scabs).

It's been about 3 months now and I am thrilled to report that she only has 4 scabs! They aren't any open sores!! Only 4 scabs!!! We are so proud of her. We are seeing her compulsions come out in other ways but they are not harmful and they are quite manageable for her. They best part is that she is proud of herself too. We are headed to the psychiatrist this week. He will be so proud of her too. The next step will be weaning her off the Resperdal. Please wish us luck! We've heard some horror stories about the weaning process.

Now on to my thin skin...

I have been jumping out of my skin with excitement over Paige's amazing accomplishment with her skin picking. Since I hadn't had a chance to post the good news on to my blog, I had quickly mentioned it on one of the on line groups I am on. I had planned on posting a quick update on my blog the next day but then I got suckerpunched. I received an email from someone telling me to read the post of a fellow blogger. A fellow preemie parent blogger no less. My jaw dropped when I read the post. This blogger was basically saying that OCD was the fault of the parent. I felt it was clearly directed toward me since it was me who was just talking about Paige's success.

My skin has thickened over the years. Between my strong feelings about comfort care and my lack of belief in a supernatural being, I have been called lots of names and been in the middle of a ton of controversy.

But, for some reason, hearing people say that Paige's OCD was my fault knocked me on my butt for a bit. I never saw it coming. I shouldn't have let it get to me, but it did. I remember walking away from the computer, head about to explode and there was Paige, right outside of my door crying. She was devastated because of the permanent scars her skin picking had left on her arms and legs. I was devasted too. Her skin used to be so beautiful, like a porcelin doll. Now her skin has hundreds of scars. As I hugged her on the floor I thought to myself, "how could someone be so hurtful and accuse me of being the cause of this?"

A few days went by and I was still devasted. A few more days... still upset about it. A week went by and I was still thinking about it. I was beginning to think that I would be stuck in that funk forever. In that dark time I received a few emails from people who saw what happened. I will be forever grateful for those people because it was their notes that pulled me out of the funk.

I always knew it wasn't my fault but it still hurt. Foolish me! I actually chose not to update my blog with the good news because it would look like I was retaliating against my fellow blogger. Boy was I being childish! Never again will someone rattle my cage that way again!

54 comments:

Flora said...

That's just crazy talk! How could anyone think that a parent could cause OCD? My older son (not a premie) had severe OCD when he was 4. Eventually effectively treated with zoloft when he was 7. Now on a oldfashioned tricyclic which works wonders.

Both my kids are on risperdal and for both of them withdrawal from it has never been a problem. I hope it's the same for Paige!

thethomas said...

Glad to see you are back. Cuddos to Paige. Sorry, you have been having a hard time with the guilt/self doubt that can rear it's ugly head at any time. You have been on this road much longer than myself, but I from time to time ask myself what have I done to make my little one behave this way. It is a part of human nature and I just have to acknowledge that I am doing the best job I can. I tell my dh that we will make it through this one way or another. Just keep reminding yourself that you are doing a great job w/ Paige. :)

Christy

Anonymous said...

TPE wrote : Then she was getting ready to go on an overnight trip with Girl Scouts and we were afraid they may not let her in the pool because of the sores. She fought her OCD very hard and was able to stop picking long enough that they open sores turned to scabs. She went on the trip and had a blast.

This paragraph should tell you something important. While Paige IS a victim of her OCD, she still can and will use it to her advantage. Her entire identity/self-image is wrapped up in being a "preemie princess". It is what she knows will turn the spotlight on her 100 percent of the time. When it is not to her advantage, she tones it down a notch.

Anonymous said...

from Laura V.

Stacy, don't you remember that autism, schizophrenia, etc., are all the mom's fault? Silly you for not remembering.

I recently went to a conference in Indianapolis. It was about mitochondrial disease and autism. The NIH, CDC, FDA, and mito experts were there. One California mito researcher said that he thought most autism is caused by mito.

My point in bringing this up is that it's far easier to blame the parents than to say we just don't understand things. I also think that it's easier to throw someone under the bus than to admit that such a thing could happen to our own children.

GREAT JOB, PAIGE!!!!

Anonymous said...

To anon July 7, 2008 9:27 AM:
From: Laura

I don't think you understand these compulsions. I also don't think you know Paige. She's a very bright girl. Her premature birth is not the center of her identity as you suggest. It's just a part of how she got here.

People with compulsions CAN control them short term. People with tics can control them for periods of time as can those with sensory issues and OCD. But, that control often comes at a high price. Afterwards it can be like a dam bursting with an increase in symptoms. As a parent to another OCD (my non-preemie) sufferer, I can tell you that he absolutely hates the OCD and the horrid anxiety it causes. Of course one can stop doing the behavior. But the anxiety that causes is horrible.

By the way, I think you're looking at this the wrong way. Paige is no victim. She is a survivor. Her endurance is amazing. How many other people do you know who would keep trying with all the roadblocks she's encountered?

Kyrsten said...

My sis recently sent me a bunch of articles theorizing on the relationship compulsive hair pulling, lip-picking, and nail biting have to OCD... I'll find it and post it.

Yes, those of us who have these behaviors may be able to "tone it down a notch," and there are certainly levels to these problems, but my gosh, I don't think I ever blamed my home life for my nail biting!! -It's something I've done since *babyhood,* not something that developed as a reaction...

I was kind of surprised that TPE wrote that, too.

liz.mccarthy said...

Oh Stacey...I'm so very, very sorry! How in the world can OCD be put on a parent!!! My goodness sweetie, you have enough on your shoulders without having to feel you are responsible! I never knew this was going on. you should have emailed me!!

I'm soooooo happy to hear about Paige's successes though! that's such incredible news.

We are seeing some "strange" behavior in Kaitlyn recently, pulling her hair out (or pretending to) and putting it in her mouth, biting her nails, fingers...etc.. I immediately thought of Paige....

23wktwinsmommy said...

I am so sorry to hear that someone insinuated that a parent "causes" OCD in their child. That is completely untrue and it is unfortunate that you had to read that. I'm sure it is hard enough to deal with Paige's skin picking without being named as the culprit.
I'm glad your back, and I hope to hear more good news about Paige as she continues to overcome so much!

Kate K. said...

First and foremost, that's wonderful news about Paige. Such progress!

Second, regarding OCD, I suppose that it is possible in some cases for parents to prompt OCD, but to argue that OCD is always caused by the parents just doesn't make a whole lot of sense. I agree with Flora who called it "crazy talk."

After all, OCD tendencies can be observed in animals. For example, my friends have two cats, a brother and a sister. The female cat has OCD tendencies; she licks patches of fur off her body when she is stressed. The male cat doesn't do this. Can't imagine how their mama (or their owners) could have made the one OCD but not the other. Some creatures just are the way they are.

Also, when I was in the NICU with my son (who was there 109 days), I certainly developed some OCD tendencies. Compulsive hand-washing, for example. One of my son's primary NICU nurses compared me to Monk. I don't think that I can plausibly blame that reaction on my mother or father.

Incidentally, I was also a preemie (33-weeker). I don't know how or in what way that changed my personality. I suspect that the OCD tendencies were pretty far below the surface. The right event (in this case the birth of my son at 25-weekers) brought out those tendencies in me. In recent months, things have been relatively stable and those OCD tendencies have been held at bay. To blame my parents would in fact be "crazy talk."

Kathy said...

Ok, I've managed to keep my cool during some pretty heated debates here, elsewhere on the internet, and in real life.

And nothing has ever gotten under my skin quite the way Anon 9:27's comment about Paige's "preemie princess" self-image has.

Maybe because I've gotten somewhat used to hearing other parents and parenting methods attacked, but I've never seen someone criticize a child. I'm so livid, I don't know where to begin.

To portray this girl who has suffered so much as an attention-seeking manipulator... Wow. Just, wow. Who are you? Do you know Paige in real life? How much of her story have you followed? Do you understand how much she loves swimming?

This isn't like some kid who fakes being sick when there's a test at school, but miraculously recovers when there's a fun field trip.

The fact that she's been able to (with extreme motivation and effort) substitute one painful, although much more socially acceptable, compulsion for another doesn't change the fact that no child should be having these compulsions to begin with!

Anon 9:27, you're a booger brain. Pppttthhh.

Kathy said...

Oh, and Stacy, welcome back! I've been checking my RSS feed every day, hoping that you were enjoying your break but looking forward to your return!

Anonymous said...

Helen Harrison asks Anon 9:27 how on earth s/he thinks Paige uses OCD "to her advantage"?

Self-multilation/OCD for "attention," or for any other "reason," is not to anyone's advantage. It indicates a brain disorder that, according to my sources, seems to involve the amygdala and caudate nucleus, among other brain centers.

These structures are more likely to be damaged or malformed in preemies than in children born at term, and the risk of OCD and other mental illnesses is, therefore, considerably higher in preemies than in children born at term.

Damage can be seen in preemies' brains before they leave the NICU (along with disordered behavior), well before a parent could have an important behavioral influence.

Stacy, please don't let the ill-informed and/or malicious views of a few prevent you from getting the truth about prematurity out to parents and professionals. The mission of your blog is too important!

Helen

ThePreemie Experiment said...

Thanks everyone. I can assure all of you, I am back on my feet and my skin has thickened.

To anon who wrote: "While Paige IS a victim of her OCD, she still can and will use it to her advantage. Her entire identity/self-image is wrapped up in being a "preemie princess". It is what she knows will turn the spotlight on her 100 percent of the time. When it is not to her advantage, she tones it down a notch."

You must not be familiar with OCD or else you would not have typed the above statement.

Yes, she was able to fight off the urge to pick her scabs but it came at a price. The fall out was horrible.

Is she a princess? She sure is and she deserves it. She is surrounded by love but not spoiled. She understands that she is a small fish in a big pond and she is driven to make sure the pond is cleaned up. She cares about the world just as much as she cares about fashion.

Is she aware that she is a preemie? You bet she is and I would do it all the same if given another chance. Is the word "preemie" spoken in our house daily. Not at all. Our days are filled with raising a 9 year old child.

She is painfully aware she that she appears different to other kids. She has been teased, many times, about her scabs, her size (2 years delayed in growth), her social differences. Knowing that she was born premature has helped her cope, not hurt her in any way. She does not use it as an excuse but rather as a way of understanding herself.

Mom 2 lilike, locke & anjeni said...

Oh my why do people go around trying to find someone to blame when nobody is to blame. Its so easy to take it out on the mom. Because something caused baby to be so early or born sick at term. And with any preemie birth yes there may be future obstacales to face. Even though that child was given the gift of life. Loved by mom and dad so wanted and given the best health care they can get. When we had a fill in RN in the admission area of FMC NNU. The nurse asked me if I had my baby at home and what I had done. Smaller hospital transported me holding an alert Lilike to FMC after FMC I was told were expecting me. Like it was my fault Lilike had TTN (wet lungs) that lasted a little less then 24 hours. With Lilike spending 1 night in a humidicrib of 0-23% blown in 02. Lilike was not born at home but in a different hospital Emergency Department because she born was so rapidly. My waters broken by an instrument because I was in immense pain from intense contractions and my baby girl Lilike was not ready to come out yet. Not that anyone at FMC knew it was TTN till they wrote it down that Lilike had TTN in her neonatal discharge papers I got in the mail. At the time they thought Lilike had suspected sepsis because of one test that showed she had high white cell count on her day of birth. With no identifiable source of infection. Same nurse got upset at me for talking about her cute foot that kicked me in the womb. Which she had on a pulse oximeter behind a closed humidicrib. She said don't touch her foot or you will start a code blue. Even putting booties on her at 3 days old I told would overheat her in winter. Gosh at the time I felt lika a bad mom for Lilike enduring what she had to endure thanks to negative comments from a few RNs.

mom to lilike, locke & anjeni said...

Here are brave little miracle twins Huner & Darcy born at 22 weeks gestation at Womens & Childrens Hospital in Adeladie. They survived with some obstacles to face. But they are very loved and cared for. And they enjoy special times in life.http://youtube.com/watch?v=5q1YVFHIA8E

Also preemie prince Jonny born at 24 weeks at womens and childrens hospital.
http://youtube.com/watch?v=0lv_-uj8umo

Dee said...

Welcome back Stacy, glad to hear things are going better!

Just on the scar issue: I used to have some unsightly scars on my legs from scratching my eczema until it bled, and I thought they would be permanent. But after having had it under control for a couple of years, the scars have pretty much disappeared.

A good friend of mine also has had many hundreds of open wounds and scabs that wouldn't heal because of her diabetes (type 1). Now that her diabetes is more under control the wounds have started to heal and the scars are fading.

I don't know how bad Paige's wounds were, but scars can't be considered permanent until they are at least 2 years old. In the meantime, you should try treating them with tissue oil, if this doesn't present too many sensory issues.

Kathy said...

Good point, Dee!

I've also had great results with Mederma and vitamin E supplements.

:-)

~Denise~ said...

I can't even begin to say what I want to say about what that person said/posted. How awful, and sad that they think that way.

Bravo to Paige (and you)! One of the things that delight me when I read your blog is that you are helping her be the best person "she" can be. So many parents get caught up in this perfect child crud and don't help their kids be the best people they can be. That's the best parenting I can ever see.

Anonymous said...

If someone makes a statement that seems to be wrong-headed, you (and I and everyone else) has to bounce back with a "Show me the evidence" kind of statement. Like when we were kids, and we said "Prove it".

The person who says/believes that mothers are to blame for X, Y, or Z is ignorant and they will NOT be able to prove such a thing. Interestingly, medicine has been one of the top mother-blamers . . . and the medical profession has had to eat crow about many such "doctrines".

Stacy, you have put yourself out there, in print, on a blog of your own, on others' blogs. You will take some flak and some criticism. Keep your skin thick!

Chris and Vic

Sheila Brown said...

Dear Stacy,

As you know, I dismissed the member of the group that you refer to in your post specifically due to this incident - and I feel some regret that I didn't do more given the impact that her misguided words and ideas had - to you and others I've shared personal correspondence with as well.

That said, I also see the continual challenge that parents of cognitively intact preemies face when dealing with their behavioral, emotional and sometimes even medical issues. It isn't as clear cut as saying "my child has XXX condition and therefore YYYY behavior/actions are understandable or expected". I know that parents struggle enormously with "how much do I approach this with compassion" and "how much is a sterner approach what is best for my child". My preemie was a late gestation child and seems relatively free (at this time) of emotional/psychological disturbances commonly seen in the preemie population, but my younger daughter, has a high degree of anxiety, but also has some physical issues that can be amplified by unchecked anxiety. It's a continual balancing act ... some days, it's all about installing a spine and encouraging a more stoic attitude ... reminding her that the sky is REALLY not falling ... and then there ARE times when the MOST helpful thing I can do is to allow her to "obsess" over something and go down that path with her. She DOES have some princessy behaviors - I frequently joke that she doesn't have family, she has "staff" ... and sometimes it is funny ... but more often, I'm left wondering how I'm doing with the balancing on the head of a pin. There are differences I think between, kids who have normal intelligence and have emotional/psychological problems as opposed to kids with diminished intelligence who also have psych issues. There is always a dynamic of manipulation in every relationship - and that certainly includes parent / child. I think children who spend a great deal of time wrestling fearful thoughts are even more likely to try to control the people and things in their world that they CAN control and they will be very sensitive to the clues about the way they can do that. Perhaps, I'm over generalizing my personal experience and I really have screwed Ali up some way - but I know that there is definitely some awareness on her part of her ability to manipulate me visa vie her health etc...

I do think that every single member of the list knew that the crazy person who implied that OCD was the result of bad parenting was just that ... the crazy, crazy person in the corner with the bad life, the limited education and the lack of the good sense G*d gave a flea to keep her mouth shut to prevent an ignorance leak.

Hugs,
Sheila

NICU101 said...

Wow! What else can I say. I think at some point, every preemie parent wonders just where their expectations, empathy, etc should lie. Saying you caused her ocd is just wrong though.

Congrats to Paige for getting her skin picking under control. That is wonderful.

If the scars are really bothering her, mederma may be of some help, along with very careful sun protection. If she keeps up the good work, I think she'll be pleased with how much better her skin looks by next year.

Anonymous said...

That poster did have a point. Your kid was able to control it because the incentive was great enough. That alone speaks volumes as to underlying abilities of handling stress vs. desires that perhaps you underplay/ don't encourage enough because of your view of her preemie status (having her recite medical history to doctors etc. instead of emphasizing being a typical kid). Bet you thought "but she's not typical!". The fact that you start from there is part of the problem.

ThePreemie Experiment said...

Anonymous... she was able to suppress the *action* of picking but not the *desire*. Believe me, her OCD was loud and clear in other areas during that time. My point was not that she could stop her OCD at any time, but that she was strong enough to direct it elsewhere and not pick her skin.

You also wrote: "(having her recite medical history to doctors etc. instead of emphasizing being a typical kid)"

Paige stepped into that role. We never told her to recite her medical history. Never. She started doing it on her own. And, what has to be put into perspective here is that she is repeating what she has heard, she does not personalize her early history. As she started getting older she was thrilled that the docs would listen to HER since it was her body.

It is impossible for you to make accurate assumptions on MY child's life based on what you read here. It may seem that we lead a life around her prematurity because that is what I discuss here. Why?... it's all in the description on the front page. I'll even save you the trip over there... here's what it says...

"A community of people dedicated to the open discussion of the long term effects of prematurity."

I have another blog where I share about our family life, but that is not what this blog is about.

ThePreemie Experiment said...

Thanks everyone. I would love to be able to respond to everyone's comment individually right now but time is not on my side for the next few days.

This morning we are headed to the cardiologist to see if the hole has closed in Tyler's heart.

Tomorrow I will be spending the day with Sarah Blake. Yep, THE Sarah Blake. She is in town for a convention. I had the honor of finally meeting her (Tuesday night) face to face, after 7 years, and I can't wait to blog about it.

Keep Paige in your thoughts Saturday. She will be auditioning for a play.

Anonymous said...

"I do think that every single member of the list knew that the crazy person who implied that OCD was the result of bad parenting was just that ... the crazy, crazy person in the corner with the bad life, the limited education and the lack of the good sense G*d gave a flea to keep her mouth shut to prevent an ignorance leak."



Okay, this goes over the line - to so rabidly attack a person that is not even involved in this discussion - it seems that you have taken the diagreements a tad personally. You certainly have to right to subscribe/unsubscribe anyone that you wish from your private e-group, but to then continue to pursue and slander them elsewhere strikes me as obsessive behavior.

I am surprised, Stacy, that you have allowed this post to stay. You have removed others for much less reason.

ThePreemie Experiment said...

Anon wrote: "but to then continue to pursue and slander them elsewhere strikes me as obsessive behavior.

I am surprised, Stacy, that you have allowed this post to stay. You have removed others for much less reason."

First of all, slander would involve naming the person, which I have never done, neither did Sheila. I have not posted a link to their blog or stated their name. My post was about *my* reaction to the situation. The person in question has their own blog and has typed worse statements.

I really do not want the focus to be on this person at all. I've beat myself up enough for letting it get to me. I'm ready to move on.

On a side note... we are back from the cardiologist and the hole in Tyler's heart has closed. Woo Hoo!!!

Sheila Brown said...

Okay, this goes over the line - to so rabidly attack a person that is not even involved in this discussion - it seems that you have taken the diagreements a tad personally. You certainly have to right to subscribe/unsubscribe anyone that you wish from your private e-group, but to then continue to pursue and slander them elsewhere strikes me as obsessive behavior

LOL !!!! ... anonymous cowards love to believe that only their bullying opinions are reasonable. You're all up in arms over comments about a person totally unknown to anyone here .. yet, you have no problems what so ever, with the other anonymous cowards here bashing Stacy by name on her own blog. Not only do I not "obsess" over the ignorant individuals who say things like OCD is caused by bad parenting .. I do not even give them cyber-space - because even though they may be thoughtless fools - their words CAN hurt, intelligent, informed, kind, considerate, loving parents doing a wonderful job as human beings and as parents. Sorry, you don't define "the line" - in order to participate in civilized debate - you need to be an actual person. Otherwise the kind and intelligent souls here are merely talking to themselves and that is a waste of our precious time.

Cowardly, cowardly, bullys (like you in case I've not been clear here) - who continue to prove both their cowardice and their bullying nature through nasty, small minded and most importantly anonymous posting, are pathetic. Stacy should never worry about having a thin skin - since clearly she doesn't since she allows the cowdardly bullys to continue their immature tirades unchecked here. No one cares what invisible haters think. You are hilarious, if pitiful bafoons.

Sheila

Anonymous said...

To Anon July 9, 11:47 who said:

"That poster did have a point. Your kid was able to control it because the incentive was great enough. That alone speaks volumes as to underlying abilities of handling stress vs. desires that perhaps you underplay/ don't encourage enough because of your view of her preemie status (having her recite medical history to doctors etc. instead of emphasizing being a typical kid). Bet you thought "but she's not typical!". The fact that you start from there is part of the problem."

***
Helen Harrison,
here --

Are you by any chance the same "anonymous" who wrote in on July 7, 9:57 and July 10, 10:06?

It's so hard to know who said what without some kind of indentifier.

Can you (anon[s]) sign off with some sort of initials (they don't have to be your own) so we can get an idea, more or less, to whom we are responding?

Several more questions:

Why should Stacy consider Paige to be "typical" when Paige clearly isn't?

I mean, how many typical kids do you know who were born at 25 weeks gestation and have seizures and CP?

Doesn't it seem as if something might have happened in Paige's brain, as is it has in the brains of most other preemies, that make her *a-typical*?

Are you familiar with the MRI and psychiatric literature on preemies? It shows pretty clearly that most preemies, especially those born at less than 26 weeks, qualify as "a-typical".

My child (age 32 years) is also currently struggling with a problem of prematurity -- he can't breathe properly and finds it hard to fully expand his lungs. This problem is causing bouts of pneumonia and, most recently, a heart attack.

He can't breathe properly because his abdomen is so seriously distended that it pushes up on his diaphragm, constricting his breathing space -- at least that's the current medical speculation.

Our son's abdomen is distended from scores of previous prematurity-related surgeries and incisions which have filled his peritoneal cavity with adhesions --not to mention, CSF from his VP shunt.

His sister, a yoga instructor, has taught him a yoga breathing technique in which he stands up very straight raises his arms and breathes as deeply as he can. After practicing the technique for a few minutes his sats go up to 96 or 97 (from 92-93). So, yes, he can temporarily overcome this complication of prematurity, but his abdomen is still distended and probably (according to his surgeons) can't be fixed.

Are my husband and I, based on your logic, to conclude that because our son can *at times and with effort* oxygenate properly that his rapid shallow breathing, pneumonia and heart attack are merely attention-getting devices, augmented by our parenting failures?

Helen Harrison

Anonymous said...

First off, great news about Paige being able to redirect her compulsions away from skin-picking AND about Tyler's heart!

Regardless of what may have triggered the OCD, Paige should be proud - those scars show that she has conquered a big obstacle. As for treating the scars, Mederma worked wonders for my mother after she had surgery a few years back, but use caution with the vitamin E. Studies seem to suggest that up to 1/3 of the population may develop a hypersensitivity to topical vitamin E. As someone who has experienced that reaction (I was treating eczema) I can say that the sores that resulted from too much vitamin E were FAR worse than the original rash.

-Emily, a first time poster

23wktwinsmommy said...

I know Stacy probably won't want to do this because it could negatively impact the range of views and opinions here, but there is an option to disallow anonymous posters. I personally have, at times, vehemently disagreed with opinions here. However, I have never posted anonymously and have therefore made it possible for others to respond to my remarks. It made the conversations more real and the "debates" more meaningful. I agree with Helen (for once...JUST KIDDING!!!) that anonymous posters should initial or do SOMETHING to help identify them for the purpose of response.

And Stacy has discussed this before, but maybe we need to visit it...where do we draw the line about what we tell our preemies about their birth history and medical dxes? I for one strongly believe in telling my children about their history for a variety of reasons, strongest of which is my desire for them to be able to advocate for themselves and for safety reasons. One example is with their lung disease it is likely respiratory issues will follow them throughout their lives. They need to be able to explain this to a teacher, nurse, etc. Of course as a parent I will too and it will be in records. But what about a substitute teacher or someone unfamiliar with them? The more they can say about their health to help in an emergency, the better.
Additionally, this "preemie princess" or in my case, "preemie princess and prince" notion is kinda humorous. For me personally, my children are royalty, miracles, the lights of our lives, etc. They will always be spoiled by love, and while I never want to encourage them to use their prematurity as an *excuse* for misbehavior, the fact IS their lives ARE colored by their extreme early birth. To pretend that they are "typical" is an injustice. I'm not advocating that they should get special privileges to do whatever they want, but at the same time to ignore the physical, mental, and developmental effects of prematurity that may arise would be extremely unfair to them.
I also won't deny that almost losing them will always live with me, and I do not separate how blessed I feel they survived with my parenting. There is something extremely unique about knowing that things could have turned out very differently. This doesn't escape me, and still can bring me to tears as I soothe them to sleep each night. So maybe they will be overly "princessy or "princy" but OH WELL!

I also want to say that we need to be very careful about judging the way parents raise their children; and I'd argue especially in the case of children directly effected by medical and special needs. And if you haven't been there, you have NO IDEA.

Anonymous said...

"Cowardly, cowardly, bullys (like you in case I've not been clear here) - who continue to prove both their cowardice and their bullying nature through nasty, small minded and most importantly anonymous posting, are pathetic. Stacy should never worry about having a thin skin - since clearly she doesn't since she allows the cowdardly bullys to continue their immature tirades unchecked here. No one cares what invisible haters think. You are hilarious, if pitiful bafoons."

Huh????

I may be missing something here, but the name calling appears to be entirely onesided. SOMEONE seems to be having issues with the fact that they are not controlling the allowed dialogue. Whatever I think of your mental state I have kept to myself, since it really has no bearing on the current conversation. All children, be they the products of 24 or 42 weeks gestation, deserve a chance at life - not the life determined for them by the statistics and studies that bind them - but a life that is free and open to all that they personally can achieve.

ThePreemie Experiment said...

Anon wrote: "All children, be they the products of 24 or 42 weeks gestation, deserve a chance at life - not the life determined for them by the statistics and studies that bind them - but a life that is free and open to all that they personally can achieve."

Before anyone responds to this person... I would prefer that you didn't.

Clearly they are trying to stir the pot. My post is not about statistics and studies or what type of life one can achieve. It was about Paige's triumphs and my lesson learned.

Stick around anonymous. There will be plenty of opportunities, in the future, for you to argue since I blog about controversial subjects. This isn't one of them.

Anonymous said...

There's more than one anonymous here. I did the post agreeing with the first poster only. 23 week twin mommy- I'm pretty sure you are the boxer's wife, right? I've read your blog and you appear to be a loving, open, balanced person. Everything you wrote in the comments makes total sense and I agree with you.

However, I think there's some kind of indelible boundary between awareness of and full identification with one's issues and this is where PE's kid appears to have needed more parental guidance. When you are ticking off your ailments to your peers etc. at school to the point where they think you are weird, then you are overly identified with your labels. Thats a parental boundary problem because parents aid in early development of self-identification issues.

I think PE really loves her child, but what a mistake. Plus, how fair is it to post her pic and name on a public site with stories of scab pickings and eyeball gouging etc.? How much is she going to love THAT when she turns 16 or so??? Another parental boundary violation. A HUGE one. At least change her name and hide the pics.

Helen that must have been terrifying. I'm so sorry.

BTW, to the person ranting about "bullys". Its bullies. Thats the plural. Bullies.

Anonymous said...

To anon July 9, 2008 11:47 PM
From Laura V.

People with obsessive behaviors may be able to control those behaviors for short periods of time. Usually, the behavior worsens afterwards. This can happen with OCD behaviors much like it happens with tics.

For example, many times kids can control their behaviors while at school and then totally melt down at home because they cannot possibly hold it in any longer. That does not mean they're not dealing well with their home environment.

A child may be able to control a behavior like skin picking or even a motor tic but may not be able to concentrate in school.

My son has OCD. He HATES it. He tries really hard not to do the behaviors but when he doesn't do them the anxiety is horrid.

Also, think about the fact that Paige has OCD. Isn't it conceivable that the fact that she recites medical history is an expression of her OCD?

23wktwinsmommy said...

Anonymous, I do hear what you're saying, and I never want to create a situation where prematurity is my children's sole identity. I don't think it's fair to say how much of Paige's identity is linked to being a preemie, because we don't know Paige. The focus here is on effects of prematurity so obviously it will be talked about a lot.
And if you've read here before you'd know there are some things I agree with and others I don't; but criticizing Stacy's parenting of Paige is something I strongly disagree with.
I'm coming from a place where it seems clear to me that the effects of prematurity will be an obvious factor in my children's lives. In my opinion, their scars alone are reason enough to explain their early birth to them. Perhaps this is not the case for all preemies, and perhaps the less obvious signs, the easier it is to question how much a child should know about their early birth.
Another important point is that knowing about their dx or birth history can help a child feel less alone. When you know why something is the way it is it can be easier to deal with.

Anonymous said...

Chris and Vic here:

Okay, we all know that controversy and stirring the pot and sensationalism is a draw. I sometimes wonder if we don't respond to these kind of prompts because of boredom. We need a bit of excitement, so we jump into the fray.

It is obvious that we all have our individual styles and values in parenting.

It is obvious that we are all trying to create our own (new) "Normal" with our kids who, as ex-preemies, do not follow most of the norms.

Also, we all stumble through, finding our way, making some mistakes, re-visiting our former decisions and revising them . . .

Many have pointed out that you cannot give the absolute right advice, nor can you judge, because you aren't there, on the front lines, living day-to-day with the child in question--in this case, Paige (and Stacy).

Stacy wrote to say what she learned about herself, and to say that Paige has had a success.
We can discuss what Stacy learned and where Paige is, without blaming, judging. We can openly explore these lessons, developmental stages, successes.

But to be judgmental shuts down some people, while inflaming others. I don't see either of those responses as uplifing or healthy. Stirring the pot is just getting your adrenaline and cortisol rushing. It has the same feeling as reading the tabloids at the end of the check-out aisle in the grocery store. It is not rational; it doesn't lead to further insights (for me).

Please, let's be kind to one another, and supportive.

Chris and Vic

Anonymous said...

From Helen Harrison:

I want to thank everyone who expressed concern and support for Ed, and for DH and me, during this difficult time, including Kristie, Tammy, Anon 11:00, and those of you who have contacted me off the blog.

It has been terrifying, and I suspect it will continue to be, if the MDs current diagnosis is correct.

I do want to emphasize, once again, my strong conviction that Paige's difficulties are no less physically-based, prematurity- related, and terrifying than those afflicting my son.

My heart goes out to Paige and her family. I wish us *all* strength and courage for the road ahead!

Helen Harrison

Kathy said...

Anonymous July 10, 2008 11:00 PM said:
"I think PE really loves her child, but what a mistake. Plus, how fair is it to post her pic and name on a public site with stories of scab pickings and eyeball gouging etc.? How much is she going to love THAT when she turns 16 or so??? Another parental boundary violation. A HUGE one. At least change her name and hide the pics."

Children's privacy in the age of "mommy bloggers" could be a whole new topic here, especially for parents who's kids have special needs. (Let's have that discussion sometime, Stacy!) When do the rights of the parents to seek an online community during difficult parenting situations supersede the right of a child not to be embarrassed someday?

The very parents who have the most potentially embarrassing things to post about their kids are the ones who most need an online community.

But I'd like to point out that, as far as any of us know, Stacy and Paige aren't their real names. And we don't know where they live, or their last name. There's no preemieexperiment.net that you can do a whois query on to get a home address. Unless someone is already in the world of preemies, or Paige talks about the blog (unlikely, it's gotta be pretty boring from a kid's point of view), it seems unlikely to me that a schoolmate would stumble upon this. As long as Paige doesn't link a MySpace page to it, and as long as they don't mention it while doing something that would get them into the local press, like a March of Dimes ambassador gig, I think it's unlikely it'll be discovered on the basis of photographs alone. "Security through obscurity is no security at all," the saying goes, but, well, it IS a little bit of security.

Some parents I know blog with very obvious pseudonyms. (A good friend who blogs a lot about her son's autism calls her boys "The Cat" and "Spliggle.") Other moms I know use slight variations on their kids' names, or initials, or keep blogs private.

We're the first generation of parents with this power, and we're all still learning the ropes, especially as the technology changes. A parent can eventually make a blog private, or archive it and take it down, but there's always Google Time Machine and who-knows-what technology coming down the pike.

I'm assuming that since virtually every peer of mine who is a parent has some form of a blog with public photos, the sheer VOLUME of mommy blogs will eventually prevent kids from being able to identify their schoolmates' pages.

Anonymous also said to Sheila:
"...BTW, to the person ranting about "bullys". Its bullies. Thats the plural. Bullies."

It's the internet. We're busy parents. As long as arguments are understandable, we ignore typos and stick to the issue at hand. But since you brought it up, "Its" is a plural. You meant "It's," for "It is." Same with "That's." Pedants who live in glass grammatical houses shouldn't throw stones.

Kate K. said...

Kathy,

You bring up some interesting points on privacy in the Internet Age. I too have a blog started May 2007 with the birth of our son who was born at 25 weeks. The original purpose of the blog was to keep family and friends informed about our son's tumultuous NICU journey, as my husband and I spent the summer by his bedside and weren't exactly socializing at that point. When he came home on oxygen and was kept in house during RSV season, we continued the blog. We have a lot of family out of town, so the blog is a way to keep in contact with them. We don't use our last names on the blog, but it is open for others to see.

I don't know how long we will keep the blog going, but we enjoying posting about our son's triumphs. He has made great progress overcoming some feeding problems.

I guess a large part of me just isn't concerned about privacy issues because although he has had problems, there isn't anything for him to be embarrassed about when it comes to his medical condition. The things we post on the blog are things that we would tell our friends and family if they were talking to us in person or over the phone. And, if we wanted to take the blog down later, we could.

Again, it is an interesting topic for discussion.

Best wishes.

Anonymous said...

For the scars, try vitamin E oil. Just pop the pill directly on the scar and rub it in. This worked wonders for my burn scars; I doubt OCD picking scars are any different.

Anonymous said...

You know the sad thing about this blog is that I can tell you all of her medical dx, but nothing about her...... I have a chronically ill preemie and he is not an illness to others but a person. This is because of the way it is presented to him and others by my husband and I. We don't use it for attention or to gain pity. We want people to respect our son for what he is, not what he has. When my husband and I are gone he is going to have to take care of himself. How can he do a good job if all he is to other people is a disease?

Sheila Brown said...

Kathy wrote:
When do the rights of the parents to seek an online community during difficult parenting situations supersede the right of a child not to be embarrassed someday?


Dear Kathy,

Although your entire post was magnificent (including your very sweet defense of my haste in posting a response here without proper editing) ..

I believe this was a most salient and provocative point. While the medium has changed from women sitting in their parlors discussing the distressing aspects of their mothering careers- the reliance on peer support has been around (so far as the archeological record permits) since we wandered out of our caves - and has been chiefly responsible for the advances we've made as a species for understanding our human nature.

Of course, what IS surprising is why folks who are offended by loving, honest, truthful discussions insist on eavesdropping ... the folks who post on Stacy's blog about their *real life* challenges are not (so far as I've heard) holding these people who are offended by frank honest discussions hostage and forcing them to read here. Of course there is no way to know if Stacy and Paige are pseudonyms ... and there is no reason to ponder their identities ... It is frankly offensive to ME that there are still people living amongst us that would have the Paige's and Edward's shunted away in isolated institutions so that their behaviors and conditions don't offend others. It's shocking to me actually. The notion that pretending that your child doesn't have conditions that they most clearly do, will only create a level of shame and inadequacy in handicapped children of low normal or normal IQ. Only children incapable of understanding their parents reactions and words might be spared from viewing their handicaps as something which shouldn't be discussed in polite society. How much worse a job can a parent do than to raise a child who feels completely judged, rejected and abandoned by the very people who are supposed to create their safe place to land. Do these anon's actually think that Paige is unaware that trying to gouge her own eyes out isn't abnormal ? Do they actually believe that reading a passage here that described her mothers' anguished, boundless loving concern for her would make her feel worse ? I think she'd feel much worse if she were gouging her eyes out and her parents were wrapped up in a discussion of what their getting at Walmart and what was going on with some inane reality TV program, and that her mothers blog contained only manufactured stories of how blissful life at their Casa was.

Kathy - you are an AMAZING writer. A brilliant parent and a wonderful, wonderful friend. I vote that the world order a few million Kathy's.

=Sheila

Anonymous said...

From Helen Harrison to Anon 3:23:

If you don't have a good idea of who Paige is, of her tenacious spirit, her musical talent, her precocity, her beauty, her "climb any mountain" approach to challenges --then you haven't been reading this blog very carefully.

Paige is a real and wonderful human being to those of us who have been here from the beginning.

Stacy and the rest of us do not write to elicit pity or gain attention, we are simply trying to carry on honest and informative conversations (among consenting adults) about prematurity. This means, among other things, candidly confronting our children's problems.

There are so many out there, who, for emotional, ideologic, professional and/or financial reasons, are uncomfortable with acknowledging the problems of prematurity. And as Sheila pointed out -- no one is forcing these people to participate here.

If you feel that forgoing such discussions will help your son live independently one day...well, you may be one of those people, and, if so, the solution is simple and obvious -- don't visit this blog!

To Kathy and Sheila:

Great posts you guys! Thanks!

Helen Harrison

Anonymous said...

Laura said

Anonymous July 12, 2008 3:23 said...
"You know the sad thing about this blog is that I can tell you all of her medical dx, but nothing about her...... I have a chronically ill preemie and he is not an illness to others but a person. This is because of the way it is presented to him and others by my husband and I. We don't use it for attention or to gain pity. We want people to respect our son for what he is, not what he has."

One thing about blogs and email lists is that they are misleading. A group dedicated to a certain condition talks about that condition all the time. Just because a group talks about disabilities does not mean that the real lives of those people revolve around those issues.

My daughter was a 22 5/7 weeker. She has very few preemie issues but tons of issues related to her underlying medical condition. I could rattle off tons diagnoses. I am not sure she doesn't have s body system that's not involved. But, while I speak about those things in venues such as this, we don't talk about it at home. It's not her thing.

Some things about Paige: she adores her brother, loved her dog, is really smart, and she tries so hard. OK, so Paige can rattle off her medical history. That doesn't mean it's her life. It doesn't mean her family talks about her health daily around the dinner table. It means she listens during physician appointments. She's had plenty of provider appointments.

Hey, Stacy, would Paige like to meet Katie's new horse? It looks like she's getting her wish soon. She thinks she's picked out a name, Joshua. She wants a name that means something and she likes the meaning and sound of Joshua.

You see, anonymous, Paige is just a nine year old girl.

Sarah said...

[hugs] I'm glad you posted this. And I'm so glad I got to meet you and Paige this week. Btw, you can tell her that no one at the convention knew she had scars. That'll make her two days even better, as if that would be possible. :)

Sarah Blake said...

Reading the comments... A few thoughts on privacy from someone who has grown up in the preemie seat. I'm too old for my mom to have had a blog during my childhood. We have letters that she and other family members passed around to people who are unknown to me. They say things like, "Our three-year-old granddaughter is blind ..." before proceeding to expound on some accomplishment I had made or explain something they had learned about life because of me. I enjoy reading these letters. They are much more enjoyable than the childhood memories I have of people asking, "What's wrong with her?" in a nasty voice and hearing my parents and grandparents explain as nicely as they could, "She's blind." I remember my sister exploding in restaurants, "Quit staring at my sister!" I never had a private life, and I was not a person back then. I am often not a person now. I am that lady with the dog--if I am considered a lady at all. Often I am a "girl," or my dog's name is learned but not mine. People feel very free to ask me questions about my disability but not about my personal life. I have learned that they don't want to know who I am. So I am very comfortable talking openly about my situation. I can control what I reveal, and it doesn't bother me. It doesn't bother me that my family talks about me. When you live with disability, your life often becomes an open book whether you want it to or not. Being willing to talk about it gives you the control over the book instead of the rest of the world.

ThePreemie Experiment said...

Thank you to everyone who came to Paige's (and my) defense. I am forever grateful for the support. I am proud that my skin has thickened and those comments don't bother me anymore. I am even more proud of the loving nature of those who read my blog!!

ThePreemie Experiment said...

Sarah....

Oh boy do we miss you!! Paige cried all the way home Friday!!

I will be doing a blog post of my own about our visit (once I can get my emotions in check and can form a solid sentence) but then I hope the offer still holds that you will do one with me.

To my readers, bear with me for a few days. There is a new post coming (with pictures). But the few days that Paige and I spent with Sarah, Kevin and Michelle (you'll have to wait to find out who they are) had a huge impact on my life and I'm trying to sort it all out in order to write a post that others will be able to understand and one that will do justice to the admiration I have for the above mentioned people.

23wktwinsmommy said...

Very much looking forward to the upcoming post!

Sarah Blake said...

Stacy, I hope you will show this to Paige. I miss you, honey. We'll do it again very soon. There will be a very special surprise in your mom's email sometime this week just for you. [hugs] from me and Loretta!

Sarah Blake said...

I have not been here in a while so am taking the opportunity to catch up and (for once) read a number of comments. Since I know that Stacy is working up a post regarding our recent meeting, I am going to take the liberty of posting my impressions for those of you who seem to get the impression that there is some kind of hyperfocus on medical issues in their lives. It is really worth bearing in mind that this blog is here for discussion of preemie issues and that means medical issues are the primary concern.

When Stacy and I first began talking about meeting (at least two or three years ago), it was with the knowledge that Paige knew about her prematurity and might benefit from meeting an adult preemie and forming a relationship in which she would feel safe to ask questions. Paige knows that I am a preemie and that her mom met me on a preemie community. But when we met, she said, "Hi, I'm Paige," just like any other kid I know. We went into a store, and she wanted to look at pink carseats. We had a good laugh about the idea of her baby brother riding in pink, and we talked about pink being my favorite color because I can see it but some things not looking good in pink. (She wanted to know if I had another favorite color--and she could probably remember what I said.)

We actually had two days together. On the second day, we had lunch. I took her with me to watch while I did some usability testing on options for accessible currency. I was surprised she didn't mind being out of Stacy's sight. We later went and had coffee/hot chocolate and cookies in the deli. She put ice in her hot chocolate and created a latte. It's something my local friend's nine-year-old would have done. I had to work to remember that I was with C and not Paige.

Paige is a real, live nine-year-old little girl who happens to have an extra set of challenges to deal with in her life. The fact that she knows what they are means that she can educate herself and find the support she needs. I am proud to know her! As you read these blogs, don't forget that you're reading the stories of real people, even if they do use pseudonyms. Sitting at the coffee shop with them, you see the whold person. Reading the blog, you get whatever they choose to reveal.

Anonymous said...
This comment has been removed by a blog administrator.
Susie Korbel said...

That's so sad that someone could say such a cruel and ignorant thing, Stacy. I'm sorry for the pain it caused you.

(and psst... thanks for adding me to your Facebook!)

Anonymous said...

Helen said: "Self-multilation/OCD ... indicates a brain disorder that, according to my sources, seems to involve the amygdala and caudate nucleus, among other brain centers."

I had a thought about OCD lately somehow similar to some behaviors in the nesting instinct and thinking that perhaps this was a function of the primitive brain.

I THINK but I may be wrong that the amygdala and caudate nucleus are part of the primitive brain.

For example, the need in OCD for collecting things, not letting things go, creating a certain kind of order in the environment reminded me of a little critter creating a nest.

This isn't well written or well thought but I thought that somehow these behaviors that we see in OCD are connected to the primitive brain and an expression of a more primitive and reflexive kind of behavior. Perhaps instinct, but instinct acted out to a much greater degree in OCD.

Regarding Anonymous July 7 9:27, my honest response was that I think Stacy should have the right to set boundaries and delete that comment. At the same time, I see an element of courage in Stacy allowing it to remain on the blog.

We may, with life experience and maturity, develop skills that give us the ability to deflect negative energy or not engage, or to learn to not take things personally - but non-validating, judgmental, personal and malicious comments hurt and do nothing constructive for any of us - except give us the challenge to learn to "rise above" such behavior.

Joan