Wednesday, May 23, 2007

Post Traumatic Stress Disorder In Preemies

While reading a post about childhood PTSD over at corpus callosum, it brought me back to our discussion on PTSD here on this blog, and how parents of preemies endure so much continuous stress from their NICU experience and subsequent thrust into parenting a preemie.

I wrote to the blog author and asked his thoughts on whether or not preemies themselves could be suffering from PTSD and what could be the cause of the mental health issues they face in infancy and as they get older.

He was gracious enough to write a post on the subject.

As I speak to various docs and read studies on the long term effects of prematurity and learn what is being done to improve the outcomes, I hardly hear anyone discussing mental health issues. Thank you to Corpus Callosum for addressing my question.

Out of all of the long term effects of prematurity that Paige currently deals with, mental health is the hardest to treat. It is takes its toll on her and all of us in the house. She suffers horribly at times. And, because we have to deal with the "she looks good to me" mentality, it's hard to find help. She is not alone. I talk to many parents who are at the end of their rope because of the behavior of their preemie. Adult preemies suffer as well.

How can we help future preemies if no one will acknowledge the mental health issues that plague our kiddos?


Kerry said...

This was fascinating. Thank you for sharing and linking.

My son was born at 27 weeks and 1200g, so as I understand it, falls just above the micropreemie definition (am I right? I may not be) and at three is in a so far, so good stage, for which I am forever grateful.

However, I'm always a bit shocked when I realise that he did just qualify as VLBW (because having seen the babies in NICU at half his weight and size, I think of him as big) and I should stay aware of possible future issues, not to panic myself, but to stay alert for potential symptoms.

Thank you for your blogging and the information it provides.

Our children, it seems to me, are currently the test subjects for those answers that aren't yet available. It seems terribly unfair, but I try to remind myself than anything that helps a future child and parent must have its good points somewhere.

Helen Harrison said...

Just read "Corpus Callosum" and wanted to comment on the article in Journal of Perinatology that he cited. Dianne Maroney is a NICU nurse and mother of a 26 week preemie. She is a good friend and I'll try to get her to join the discussion here.

Very interesting topic!

: Joseph j7uy5 said...

I appreciate your comments. Let me expand on one thing. The state of child mental health services in the USA is a national disgrace. The field is chronically underfunded and understaffed. I know every area of health care could make the same claim, but it is especially tragic in the case of the children.

The Preemie Experiment said...

I couldn't agree with you more Joseph!

If there ever was a stigma on adults with mental health issues, it's worse for children.

Over the past 8 1/2 years I've encountered some nasty people. I've heard everything from, "kids can't have anxiety issues", "Why does Paige have anxiety? What does SHE have to worry about?" (in response to Paige being medicated) "How can you live with yourself?" And my all time favorite, "She just needs more hugs." If I could hug away her mental health issues, they would have been gone a long time ago.

There is very little support for parents of children with mental health issues but tons of blame to go around.

Vulnerable Child Syndrome gets used on parents of preemies all of the time. I'm not discounting it fully, but the likelihood that VCS is the cause of the long term mental health issues in preemies is absurd!

Then there are the attitudes of extended family members. They watched the preemie survive and leave the NICU so they automatically assume that it is smooth sailing from there on out, despite the fact that the parents of that preemie are struggling with on going issues.

There are many areas of prematurity that need a lot more attention. But, mental health issues are not getting ANY attention.

Thank you again Joseph.

The Preemie Experiment said...


If you talk to Dianne, please tell her "hello" from me also. It's been a long time since her and I have written each other. She was very helpful a few years back.

Also, I would love for her to join in our discussion. Her insight is very valuable.


Helen Harrison said...

To Stacy:

"Blame the mother" has been a favorite tactic in the case of otherwise unexplainable childhood disorders for as long as I can remember.

Fortunately, there are now lots of MRI studies showing that the areas of the brain affected in preemies *when they leave the NICU* are the same ones affected in older individuals with such mental health disorders as autism and schizophrenia. MRI data is now providing an "explanation" of our children's psychiatric difficulties.

Almost all of these studies (of neonates and mentally ill adults) show a common factor of ventricular dilation,for example.

There is an emerging view that mental illness (as with organ development issues resulting in hypertension and glucose disorders in preemies) is due to disruptions of normal growth and development during fetal life (or what would have been fetal life if prematurity hadn't intervened.)

The fact that these brain and organ problems can be seen while the child is still in the NICU should dispel the notion that mothers are the cause of subsequent manifestations of these problems.

Since the vast majority of extremely premature infants are born early due to infection and/or inflammation, these factors also appear to play major roles in causing the preterm birth and setting the baby up for further damage.

The pain and stress of treatment in the NICU seems also appear to have a negative impact on brain development. Research by Heidi Als and others is showing that the use of developmental care can mitigate the effects of pain and stress and lead to better brain development.

Family members, friends, teachers, physicians and the public need to be better educated about the physical, brain-based, causes of our children's mental illnesses!

And Dianne should be joining us here soon!!

From Dianne Maroney said...

This is a message from Dianne that I am forwading to "The Preemie Experiment"-- Helen Harrison

Hello everyone! Hi Stacy, wow, Paige has grown! This is my first time "Blogging" so I hope this goes through correctly. There is so much to say about Mental Health and the Preterm Infant, but so little space. The MD who wrote, graciously mentioned the article I published a few years ago. What is interesting is in the original version of that article I discussed PTSD in preemies and I was told I had to remove the term "PTSD" because it had not been proven that preemies developed PTSD! Well I had to concede to get it published, but the truth is they do, it just looks a bit different. There are enough studies out to show there are common threads to premature infants and there mental health issues. The most common problems found in the research are ADD or ADHD, anxiety, some depression, anger outbursts, OCD, and the list goes on. The problem lies in the perimeters used in diagnosing these issues are too strict, preemies have some forms of the criteria, but it's often more subtle that what is needed for a true diagnosis. Preemies are often unusually afraid, they have social challenges, they can have anger outbursts, sleeping issues, startle easily, get stuck on issues, they don't believe in themselves, etc. What is interesting is if you look at the PTSD research for children who have experienced other traumatic experiences such as natural disasters, abuse, etc., the symptoms parallel each other! Although there isn't any research on trauma in infancy that I am aware of. The trick is getting the mental health world to recognize even the possibility of PTSD in preemies. I don't know how much room I have so I will sign off and write another blog about causes and treatment...Dianne Maroney

The Preemie Experiment said...

Dear Dianne,

Thank you so much for joining our conversation. It's been a long time since we've "talked". Hope all is well on your end.

The mental health issues that preemies endure is hard for all involved. We finally have a good team (psychologist and psychiatrist) but it took a long time to get that help. I'm saddened when I read about other preemie parents who are struggling with their child's behavior and they are told that they need to adjust their parenting style. I'm tired of the inference that the parents caused this behavior. Then there are the adult preemies who struggle with mental health issues.

How has the medical world been able to ignore this for so long?

I owe it to parents to provide information and resources so they can arm themselves when talking with their docs. Helen, Chris and others have been a tremendous resource on this blog. I am thrilled that we can now pick your brain too! lol


Stacey said...

Thanks so much for posting about this and to Corpus Callosum for his long, detailed post. My 5-year-old preemie definitely exhibits some milder forms of those neurological issues. He's had an MRI and it doesn't show enlarged ventricles, only dysmyelination. No one seemed to know quite what to make of that.

He's an angel at preschool and his teachers always look at me strangely when I ask if they're having any problems with him. Home is a *completely* different story! And, as you mentioned, I don't think *anyone* would believe me or recommend treatment other than "better parenting". After all, his anger outbursts often produce my own. Bad, bad mommy. He's starting kindergarten in the Fall. I'm holding my breath that it goes O.K. He also stutters...which I suspect he's somehow predisposed to, but I think it has a lot to do with his anxiety level too. He's an odd little kid.

Interestingly, some of my friends don't even seem to believe the kid stutters! They tell me "Gosh, his speech seems fine to me." I guess it's because they never hear him try to speak an entire sentence. Sometimes, he can barely put two words together! Ugh. More things to blame on bad parenting, right?

Thanks again. This was a terrific post!

Stacey (the one with the 'e')

The Preemie Experiment said...

Hi Stacey,

I wanted to share my own experience in hopes that it may help you.

Paige began special ed preschool(through the public school) when she was 3. Her behavior at home was explosive, to say the least. But, at school she was an angel. As soon as we would get in the car she would start freaking out. I was at my witts end so I turned to the school social worker. HUGE mistake. Her first question was, "Can you tell me what is going on at home that would cause her to act out so violently?"


About a month later Paige started seeing a psychiatrist to get on meds. When I alerted the school so they could watch for reactions, the social worker called the psychiatrist to question her. (I learned my lesson on not signing releases!) Social worker told psych that she felt I was fabricating symptoms to get Paige on meds. (WHAT!!!) The psychiatrist fought back and said that not only did she witness Paige's behavior herself, she spoke to our private psychologist to confirm. The social worker did not give up and told the psych that something must be going on in our home because Paige could hold it together at school. The psych said (to the social worker), "well, when you have a bad day at work do you blow up at your co workers, fall to the floor and kick and scream or do you wait until you get home and let loose then?" She explained that Paige was very intelligent. Between that and the fact that Paige's severe anxiety disorder prevented her from exploding in an environment where she was not comfortable, it made sense that Paige would only loose it at home.

Her explanation made sense. Paige was in sensory overload at school and full of anxiety. Home was safe and a good place to meltdown.

Maybe this is exactly what your son is doing.... exploding only where he is comfortable.

Oh, and on the "bad mommy" comment... I'd take the cake on that one any day. I look back and wonder who was the child at times! lol You wouldn't have wanted to be in my house the day Paige spit in my face.

Stacey said...

I think you hit the nail on the head with that one. I suspect Gavin has a milder form of some of the issues that Paige has. He doesn't unload on me right after school, necessarily and I wouldn't say it's exactly 'explosive', but I get the impression he's got no control over it and often doesn't know how to get out of a downward spiral in behavior.

Hopefully, he'll make it through school without meds, but you'll certainly hear from me if we need them! Did Paige's behavior problems crop up at school before you got her on medication? I'm wondering if Gavin's will show up when he's spending more time there. Or will things at home just get that much worse if he's spending more time at school?

If I end up in your position with the meds, I certainly hope I've got some great private professionals to back me up like yours did. Ugh. There's nothing quite like being blamed for causing your child's if we don't all feel bad enough that our bodies just couldn't hold onto a pregnancy for 40 weeks. So much of it seems to be all about that!

I think I'd beter come up to a reasonable response to having my kid spit in my face. Otherwise, the day Gavin spits at me (and I'm sure it's probably coming), is going to be an ugly one!

Anonymous said...


Joan McKenty said...

I will recommend again Peter Levine on healing trauma. I just read a very interesting article of his at:

His book "Trauma Through a Child's Eyes: Awakening the
Ordinary Miracle of Healing" is described on Amazon:
"This is an essential guide for recognizing, preventing, and healing childhood trauma, from infancy through adolescence — what parents, educators, and health professionals can do. Trauma can result not only from catastrophic events such as abuse, violence, or loss of loved ones, but from natural disasters and everyday incidents such as auto accidents, medical procedures, divorce, or even falling off a bicycle. At the core of this book is the understanding of how trauma is imprinted on the body, brain, and spirit, resulting in anxiety, nightmares, depression, physical illnesses, addictions, hyperactivity, and aggression. Rich with case studies and hands-on activities, "Trauma Through A Child's Eyes" gives insight into children's innate ability to
rebound with the appropriate support, and provides their caregivers with tools to overcome and prevent trauma."


Helen Harrison said...

I think either Stacy or I may have already put this up somewhere on the blog, but it bears repeating.

It is a quote from one of the MRI studies that Terrie Inder and her co-workers have been doing on preemies.

This is from: Thompson DK et al. "Perinatal risk factors altering regional brain structure in the preterm infant _Brain_ (my copy is from Brain Advance Access published Sept. 28, 2006):

"[Our study identified] a new finding of a cerebral region of major apparent vulnerability which has not been reported previously to be altered in the preterm infant...that of the orbitofrontal region.

We documented an approximate reduction in the volume of this region by one-third...This region is known to be sensitive to stress and mediates emotional responses.

Patients with lesions within this region may display irritability, social inappropriateness, poor judgement, lack of persistence, poor frustration tolerance and inflexibility, behaviors which are commonly displayed by infants born prematurely.

The orbitofrontal region also receives information from the object-processing visual stream, taste, olfactory and somatosensory inputs, as well as from the amygdyla, and thus impairment in cerebral development in this region may contribute to the delayed sensory integration of preterm infants.

The factors mediating disturbance in development in this cerebral region were not readily apparent in our analysis, with no clear association with any conventional perinatal factors ...This suggests that there may be important mediators of cerebral development which are not currently recognized but which may include environmental stress and/or drug exposures.

In further support of the regional cerebral development in the preterm infant, interventions aimed at reducing stress have been shown to improve frontal region cerebral [white matter] development." [see Heidi Als' study in 2004 _Pediatrics_113:846-57]

This study, and others like it, may help in defining the physical effects of traumatic stress on our children's brains, and ways to prevent it.

Jane said...

I've really enjoyed, been challenged and appreciated your blog. You've inspired me to start one, too!
While my second son was 1200gm at 32 weeks, my water had broken at 24 weeks and the doom and gloom (your baby will be delivered tonight and you'll need to make a decision about life-support) was enough for me to yell at the teams of interns to just f&ck off and get their filthy hands out of my cervix.
Anyway, now at 4.5yo he's had his share of issues, but other than his general health, none are severe (very mild left side hemi and other stuff). What's interesting is what I'm picking up now - just got word of an 18 month fine motor delay, and have just figured out he has face-blindness (without any signs of autism spectrum or memory issues). My journey will end the day I die, but I think that Mums of typical kids feel the same way. They obsess over a small birthmark, or whether to start oboe or violin, while we obsess over golden staph, or o2 sats, or AFO's, or PTSD (no doubt in my mind that parents, infants and siblings suffer after the Preemie Experiment)...
I'm guessing you don't mind, but I wanted to let you know I've linked my Blog to yours. Thanks.

The Preemie Experiment said...

Jane wrote: "I've really enjoyed, been challenged and appreciated your blog. You've inspired me to start one, too!"

Thank you for your kind words Jane. My blog would not be the same without all of the wonderful people who share their comments and knowledge. Thanks for joining in! And, welcome to the world of blogging!! (warning-it's addictive)


Anonymous said...

Just fyi...Neonatal Doc is back!


buddhist mama said...

Thanks for the post PE, Dianne for the article, and Joan for the Peter Levine reference. Why has the medical world taken so long to recognize a connection between the NICU and trauma? It seems a no-brainer to conclude that a NICU is traumatic. Its traumatic for us parents even if we are only watching the daily heel sticks.

To answer PE's question, I'd like to suggest that recognizing iatrogenic problems is medicine's achilles heel. Despite the slew of recent books and confessionals on mistakes doctors make (Atul Gawande on surgery, Jerome Groopman on medical error) it is quite another thing to recognize the systematic harm that arises from medicine's best efforts at treatment.

This is one of the reasons that the work of Heidi Als, while careful and convincing, has yet to have much application, outside the rhetoric of NIDCAP (which was pretty much all that happened at the major Ivy League research NICU where my twins stayed). While Als has spent decades trying to change basic aspects of NICU care, many of her suggestions are difficult to adopt because of the cost issues of redesigning NICUs to more closely resemble wombs.

There is some hope, however, as a NYtimes article today reports. It encouraging to see that parents can have a limited influence on how the medical establishment begins to rethink their own NICUs. More power to blogs like PE for getting parents involved and/or informed.

Dianne Maroney said...

Hello everyone. It's Dianne Maroney again. I promised you at least 2 more blogs about causes and treatment for mental health issues in preemies. Sorry for the delay, my son graduated high school this weekend (not the preemie).
I have written an article on this subject with hopes to finish it this year and publish it next year, things just keep getting in my way. In reading through the research and from personal experience with my preemie and working with former preemies in my private practice here are the "causes" I have come up with. I believe there are two main areas; organic and environmental. Organic causes are brain impacts such as the ones Helen mentioned, IVH, PVL. and hydrochepalus. There are also other reasons that have been found via research such as maternal smoking, free radicals (higher in preemies), genetic predisposition. If a preemie has any of these factors they are at a higher risks for mental health issues, BUT they do not have to have any of these factors to have mental health issues. Even preemies without IVH, PVL, and hydrocephalus have mental health problems. Hence my second area of impact, the enviromental impace. Old school (which many still believe) is that because infants don't have a cognitive memory of their experiences, the experiences won't have any impact later. Well, many incredible researchers such as Allen Schore have proven this to be false. An infant's brain is growing so quickly and the neuropathways are developing rapidly for the first months and years. These pathways are extemely influenced by their environment. Genetics are their, but the environment influences are their guides. So if a baby is stressed, their brain and body will have a stress response, a momentary "state". If the stress state is continuous, it can become a "trait", hence frequent anxiety issues. PTSD: when the body has a traumatic experience (many of them in the NICU), and it is not allowed to process it (difficult in the NICU to cry, be held and shown they will be okay) then the infant can hold on to the experience and it can influence who they are later. Many preemies have angry outbursts...they have a lot to be angry about, but they have no idea why they are angry because they don't remember... Many people who are traumatized are hypervigilant, I believe the high incidence of ADHD in preemies could be a similar symptom. Peter Levine's work is amazing and will teach you a lot about trauma and the body. Another good book is "The Body Remembers" by Rothschild. It's good to understand what I am trying to explain, these books will help. Those in the psychiatric/psychology field will argue with me about this...doesn't it make sense?
Not to worry, there is help. I will send an email about treatment will have to open your mind to unusual possibilities....:) Thanks for listening. Dianne Maroney, RN, MS, CS and most important mom to Mackenzie, 26 weeker, now 14,

buddhist mama said...

Thanks for elucidating the two aspects of causation in PDST for preemies. What you say about the environment and the ability of the body to remember is in fact already well proven in the PTSD literature for adults. There are several academic psychologists, including my mentor Arthur Kleinman and Allan Young, who have written about the somatic aspects of PTSD, especially in other cultures, like the Chinese, where mental health tends to be experienced in more somatic fashion---as they don't have the same Cartesian body/mind split that we do. So perhaps it makes sense to think of preemies as another culture?

On a personal level---I noticed odd things that would cause my son to startle but not my daughter---and they were both 26 weekers, with similar profiles in the NICU. My son would startle with any loud rustling noise, esp. the newspaper I would crumple each morning to light the fire in the wood stove. I think there was a bodily memory of rustling noise associated with pain--this noise may have replicated the tape changed daily on the CPAP or ventilator or medical equipment taken out of its wrapper before an intervention. The odd thing was the extreme specificity of the noise and the rather extreme startle reaction. he was a year before he got over it.

My daughter, on the other hand, did not startle much but has anger and anxiety issues. They pale to some, but the anger is explosive, persistant, and arises out of nowhere. It also manifests way more at home than at school, where she is an angel. I have been beating myself up over this, thinking I'm not paying enough attention, or perhaps it is the stress of our home life that brings this out, so it was a real relief to read PE and others describe the Jekyll/Hyde transformation between school and home.

Thanks again for the post and comments. look forward to treatment ideas, Dianne. One thing that really worked for me was almost daily doses of flax seed oil---very high in omega 3---from 6 to 18 months. It helped with constipation, it is supposed to help mylenation, nerve damage, etc. It really seemed to work only because I noticed the difference when I had forgotten it for a week or so.

Helen Harrison said...

Edward (age 31 years) still becomes startled and upset at the sound of tape being torn.

I saw his first startle reaction to this sound before he left the NICU. He clearly associated it with preparation for a painful procedure.

daedalus2u said...

I was term, 9 pounds, have Asperger's and PTSD (from abuse, not prematurity). I have noticed very definite effects from flax seed oil (2 tbsp/d) when I miss it for a few days. It has really helped my depression. I am now 52.

I am now working on nitric oxide physiology. Nitric oxide is involved in many many pathways involved in neurodevelopment.

I am convinced that my Asperger's came from my low NO physiology (which I got from my mom), and have started blogging about my "low NO hypothesis of ASDs". I am quite sure that ASDs are evolved features, that result from exposure to maternal stress in utero, and are the attempt to "program" the brain of the developing infant into the "tool making and tool using"

One of the most convincing things to me (I realize it is an anecdote to everyone else), was that when I raised my NO level, my Asperger's started to get better before I knew I had Asperger's. It was only after I noticed the changes that I read up on ASDs and the neurological effects of NO during development.

The work that buddhist mama is doing is very interesting to me (hi bm) because women in Tibet have blood oxygen levels that are proportional to infant survival. One of the things that produces high blood O2 levels is NO. High NO is an important evolved feature that increases infant survival when born at 4,000 meters altitude.

I suspect that low NO may be contributing to preeclampsia and prematurity. Inhalation is not a good way to get more NO.

The Preemie Experiment said...

Hi everyone,

Dianne-so very greatful you could join us! I'll be looking into the resources you provided. You and I spoke a few years back about homeopathic medicine for Paige. Your guidance was very reassuring for me.

Buddhist Mama-Welcome back! As far as your daughter acting up at home but being an angel at school... As I was telling Stacey (a few comments up from yours)-I was better able to understand Paige when her psychiatrist explained that she was acting out at home because she felt comfortable-and was not comfortable being herself at school. I used to beat myself up about it too!

Daedalus... The more you post here, the more it causes me to look into what you are saying. I've been finding it very interesting. I'm sure you've done this before but... could you list foods that could help increase NO. Now that Paige is out of school for the summer, I'd like to play around with this theory on her and see what kind of improvement we can acheive. I promise to let you know what I see. Thanks for sharing.

Helen... out of all of the sensory issues that we have heard preemie parents talk about over the years, doesn't it seem like sound sensitivity is the most reported?? It sure is Paige's most debilitating issue (in relation to sensory issues).

Helen Harrison said...

To daedalus2u:

Could you elaborate a bit on the relationship between NO and altitude? We change altitude frequently -- from sea level to 6000 and 8000 ft. What might this do to NO levels?

To TPE: Not only is sound the main sensitivity in preemies, but the sound of *tape being torn* has been so frequently noted on the preemie lists and forums that it is hard to believe that it is simply an accident.

When Ed was in the NICU, the prelude to any (usually painful) procedure was the tearing off of many strips of tape. The sound almost has the same effect on me that it does on Ed -- a definite, unpleasant, rush of adrenaline.

Dianne Maroney said...

I am also very interested in learning more about NO! I highly recommend you check into more about nutitional supplements such as EPA and DHA and 5HTP.

The treatment part of PTSD and mental health problems in preemies is the difficult section. Preemies should be evaluated by a good mental health provider. One with an open mind and hopefully who understands prematurity, but I suspect there are only a few out there. I am not a big fan of medications, but when they are necessary, they are necessary. The goal would be treatment leading to getting them off meds. There are two excellent psychiatrists that have researched trauma on children extensively, Lenore Terr and Bruce Perry. I have asked both of them in person if they think preemies are traumatized and both have responded with "of course"! Lenore believes that to process trauma one must be able to cognitively understand what happened, get rid of any emotion around the trauma, and then reorganize their emotions around what happened. This can be difficult for preemies because they don't remember what happened to them. I have tried many different types of healing. I basically gave up on western medicine and primarily use alternative type healing both on my family and my patients. I believe energetic based healing is the best and fastest form of healing. There are MANY forms of this out there. I use a combination of Classical Homeopathy (, Biodynamic Craniosacral Therapy (, Emotional Freedom technique (, and the Yuen Method ( Western medicine is based in Newton's Law, that we are all matter and we must shift the matter for healing (hence, medications). What Einstein taught us is that we are energy and matter and if we shift the energy, matter will follow. Working on an energetic level allows us to let go of the trauma and the symptoms that follow. It really is possible. It takes time, but much less time than traditional therapies.

One important aspect is that we must treat ourselves as well as our children. We are tramatized by our experiences in the NICU (proven by research, worse if we have been through another trauma in our lives) and we have to process our own issues first or at the same time. Our children learn from us and they can pick up on our anxiety, anger, etc and process as we do. This is not meant to place blame, but understand that they need us to be healthy too. I wish someone would have helped me a long time ago. It would have saved a lot of repair work over the years.

There is a very interesting psychiatrist in France that goes into NICU's and tells babies their stories. Once they are told their stories, they have amazing improvements in their health. She wrote a book called "Talking to Babies" Not a great book because it's translated, but she is fascinating. We all just want to be heard and understood, same with preemies.

I have recently decided to try and help people over the phone. I am willing to work with some of you for no charge if you'd like. The problem is that my family is going to Italy on Sunday the 3rd and we will be gone two weeks. So if you are interested, feel free to email me at in a week or two and I will get back to you as soon as I can. I can try and add more over the next two days if anyone has any questions.

buddist mama...boys and girls process things very differently, its natural and common even in other areas of trauma. Thanks for sharing. Dianne

daedalus2u said...

I know of only 4 ways to increase NO levels. They are all somewhat different and somewhat complementary. The method that I am working on, is having a biofilm of autotrophic ammonia oxidizing bacteria on one’s skin, which oxidizing the ammonia in sweat into NO and nitrite which is absorbed into the skin. Precisely what it does then is uncertain, but that is what I have done to myself and have observed quite surprising and dramatic changes in my physiology, in my mental health, (depression, anxiety, PTSD and Asperger’s). The second method is via diet, consuming foods that are rich in nitrate and nitrite. These are green leafy vegetables. The amount of nitrite in preserved meat is small, and is probably beneficial. The amount of nitrate in lettuce is about 1000 ppm, the nitrite in bacon is only a couple hundred ppm. I have observed somewhat different effect from increasing my nitrate consumption. Currently these are the two methods I am using, having “my” bacteria on my skin, and consuming ~100 g of lettuce every day. Ideally one should consume lettuce several times a day because the half life of nitrate is only about 8 hours or so.

The third way is via meditation. This is known to increase NO effects, and I suspect that the reason Tibetans developed meditation was because they didn’t have alternate ways of increasing NO levels, they didn’t have green leafy vegetables they could eat, they didn’t have fuel to make sweat baths and so stimulate the bacteria that live on their skin. The fourth way is via invoking the placebo effect. This is how virtually all of the “alternative medicine” “therapies” work, via inducing the placebo effect. That includes homeopathy and most of the “energy” therapies. How well they work only depends on how good a placebo they are. Meditation is a way of invoking the placebo effect without a placebo. Any effect you can get with a placebo you can also get via meditation (of the right sort).

Invoking the placebo effect can be as simple as the “kiss it and make it better” effect. Expressing love and affection toward children improves their health by increasing their NO levels.

There might be a fifth way, but it is associated with a lot of other dubious practices which may be harmful and I can’t suggest that it be tried. That is urine therapy, which also was primarily developed in Tibet (as I understand). Humans generate nitric oxide, and that nitric oxide is metabolized to nitrate and excreted in the urine. In the absence of green leafy vegetables, urine may be the only source of nitrate available to pre-industrial people. Ingestion of modest quantities of urine might have therapeutic effects due to that nitrate. Urine is also a waste product, and there may be toxins in it which would be bad to consume. Urine can be used topically, where it would nourish a biofilm of the bacteria that I am using (after skin bacteria hydrolyzed it into ammonia). However, if you do not have the right kind of bacteria on your skin, it would have little or no effect other than from placebo. If one is consuming “enough” nitrate from other sources (green leafy vegetables), consuming urine would only have placebo effects.

Einstein did not have anything to say about “energy treatments” in so far as disease was concerned. Suggesting otherwise is incorrect. Energy to Einstein had a specific meaning, a meaning which is different than what you mean when you refer to “energy treatments”. I don't know what kind of "energy" you are referring to, I do know it is not the same "energy" that Einstein referred to (which I do understand).

daedalus2u said...

Thinking about the tape tearing, it would seem (to me) that making a specific noise before a painful procedure might be better than allowing the tearing of tape to be the sound that the preemies condition to. They are going to condition to something, and what ever it is does give them some "protection" by allowing them to anticipate the injury, trauma andn pain. It might be easier to decondition them later if a specific sound was chosen. Perhaps a different one for each preemie?

Helen Harrison said...

To daedalus2u:

Bacon as a health food is the best idea I've heard all day. I made myself a bacon, walnut and arugula salad for lunch to celebrate!

Helen Harrison said...

while we're on the topic of Nitric Oxide(NO), I remember hearing at the last Hot Topics in Neonatology Meeting that there were concerns about brain damage being caused, and/or exacerbated by, inhaled NO which is given to preemies (and FT infants) in NICUs for respiratory problems.

Do you have any information on this "daedalus2u"?

daedalus2u said...

If the inhaled NO is done "right", I can't think of a mechanism that would cause brain damage. The main danger is if there is NO2 (nitrogen dioxide) in the gas that the infant breathes. NO is reactive with the O2 in air, and will form NO2, but it takes some time. Virtually all NO administering devices have NO2 monitors that measure the NO2 real time and signal if there is a problem. NO2 would cause lung damage, acute and within a few days.

The second danger is if "too much" NO is used and the infant develops methemoglobinemia. That is when hemoglobin (which normally has ferrous iron in the heme) gets oxidized to methemoglobin (which has ferric iron in the heme). Methemoglobin doesn't carry O2, so that can be a problem. It is easy to monitor for, and 5-10% is (usually) well tolerated. In adults, they don't treat until something like 20%. You don't really see symptoms until 50% or more. But that all depends on how much excess O2 carrying capacity you have. Usually it is a lot. I don't know what it is for infants.

Both of those conditions are so well known and so easy to test for that I don't think they are viable risks for NO therapy. NO has a very short life time in the blood (seconds or less). It would be very hard to imagine how NO (as NO) could get from the lungs to the brain, and what "bad thing" it could do once it got there.

What might be happening is that NO therapy is rescuing infants that otherwise would have died, and they have more brain damage than infants who didn't get NO.

Adding NO to the air is going to increse the efficiency of the lungs, and this may increase O2 levels in the blood and in the brain, and this increased O2 may be doing something. Normally, brain development in utero is at low O2 levels. How brain development changes being in air instead of in utero is anyone's guess. It probably changes a lot, and not in a good way.

Dianne Maroney said...

Daedalus2u. Thanks for your info on NO, sounds interesting and important for many. You certainly are the scientist and know Einstein better than I. I did not mean to imply that Einstein spoke about energetic healing, only that energetic healing follows his theories about matter following energy. The energy I am referring to is the energy that feeds and controls our bodies. The same energy fields that Chinese medicine uses for accupunture, Japanese use for Jin Shin, etc. It runs through our systems, can be altered to affect healing. It took my nursing/somewhat scientific mind a long time to believe it is possible, but it is, I feel it and witness it everyday. I disagree with your thoughts about alternative therapies being a placebo effect. They are much more than that. I cannot debate this well with you as I have little time and won't be able to stand up to your knowledge base. Those on the list will just have to trust me. Thank you, Dianne

daedalus2u said...

Dianne, you are mistaken. The effects that you attribute to your various "energy" treatments are due to the placebo effect which is quite strong. Invoking the placebo effect will improve health. The placebo effect is mediated through nitric oxide. Once the placebo effect is maximally invoked, there is no additional improvement to health that it can achieve.

Einstein found that energy and matter were essentially the same, and that the conversion factor was E=mc2. The energy that feeds and controls our bodies is well known, it is ATP generated by mitochondria and glycolysis from chemical compounds consumed as food, and from O2 in air that is inhaled. There are no sources of "energy" that are unaccounted for. There are no mechanisms to produce the "energy" that you are talking about. Einstein's theory would say that if there is no source of energy, that there is no energy. That energy cannot "poof" into existance, it must come from somewhere. Energy can be converted from one thing to another, but cannot be created or destroyed.

There is no theory that predicts such things, there has been no measurement of such things, everything that is known about chemistry, physics, phsyiology, matter, energy, magnetism, electricity, etc suggests that the "energy" that you talk about exists only in the imagination of people who believe in it. That belief may foster a very powerful placebo effect, but that is all it is.

Helen Harrison said...

To Daedalus:

The results of controlled trials of iNO (inhaled nitric oxide) in preemies were recently summed up by Barrington and Finer at Society for Pediatric Research,2007, and here is what they found:

iNO for severely ill preemies has no significant effects on mortality or BPD and produces a trend toward increased severe IVH.

Less severely ill preemies may benefit slightly from routine iNO in terms of survival without BPD. Outcomes also appear better in treated vs. control infants at 2 yrs.

Late use of iNO to prevent BPD doesn't seem to be effective.

More studies are clearly needed to sort this all out.

I share your concern about the threat of increased O2 to preemies who are used to much lower intra-
uterine levels.

Joan McKenty said...


Daedalus, a very interesting book for you to check out, which might give you a different perspective of alternative medicine is Chip Brown's book "Afterwards you're a genius: faith, medicine and the metaphysics of healing". It's an autobiographical, investigative reporting journey into the world of alternative medicine.

The title itself refers to a chapter in which the author meets a man whose sole pursuit is to design an apparatus that can measure or quantify the elusive energy that has been defined in various alternative and non-western healing traditions. The scientist on this quest said something to the effect that before you make the conclusive discovery or invention you are considered some kind of nut but "afterwards, you are a genius".

I found the book to be fascinating, educational, thoroughly enjoyable and occasionally very humorous. It includes a chapter on the development of our own American Medical Association including its attempted destruction of both homeopathy and chiropractics.

My standard joke about alternative medicine is that it is any healing therapy that does not directly profit a pharmaceutical company.

I think that an educated opinion about a therapy,through reading, direct observation and personal experience gives us the opportunity to expand our knowledge, experience and understanding - and may open our own minds to new paradigms.

Certainly faith and the placebo effect are present in any healing modality - including the work of western medicine, as research has shown.

"Healing and the Mind" with Bill Moyers is another fascinating documentary - especially his journey to China.

Peace to all,


daedalus2u said...

Stacy sent me a link to the study in Pediatrics

I have only seen the abstract, but it doesn't surprise me. I suspect that the result is more due to the need to not use O2, rather than a protective effect of the NO, but there might be some of that, NO does get metabolized to nitrite, and nitrite is protective under a lot of circumstances. Pure O2 is so dangerous. Pure O2 will kill a mouse in a couple of days. The side effects are better than dying, but they are not good. It is something best used as sparingly as possible.

I don't think there is any "energy" that remains undiscovered. Some of the treatment points used in acupuncture are associated with certain nerves, and when stimulated these nerves do produce NO. NO does produce nitrite (and other NOx species) in the lymph which flows in the extravascular space along some of the same lines that are used for these various "energy" treatments. Movement of lymph is not as steady as the blood, and massage does greatly increase its movement. Many of the disorders associated with low NO are also associated with intense itching. I suspect that is to stimulate scratching, which would stimulate lymph movement, and would deliver these NOx compounds (if the skin had "my" bacteria on it).

I have read a fair amount of alternative medicine stuff, and many of the effects discussed are consistent with NO and NOx from internal and external sources. The explanations of the effects are completely non-physiolgical. The effects might be real, and may be mediated through NO. The explanations certainly are not.

I have a friend who considers herself very "sensitive", and is open to my "hard science" explanations of things. She has tried my bacteria, and to her it "feels like" what she calls "energy work". She considers herself knowledgable in many different kinds of "energy work", and says that they are "all the same". Meditation does cause the release of NO, and NO is highly involved in the placebo effect. I see no need for any other explanations. Certainly not need for non-physiologic or non-physical mechanisms.

There is zero basis for homeopathy, other than placebo. If water retained some "memory", what happens to all the homeopathic stuff that gets dumped down the drain? As it is diluted more and more does it get stronger and stronger? If so, then the whole ocean should be a massive witch's brew of homeopathic stuff. There should be no need to purchase any, because every source of water is already a highly diluted homeopathic mixture of every concievable thing.

I know the feeling about being considered some kind of nut. I know that I am not. People who have read and understood what I have written know that I know the literature backwards and forwards. They haven't read as much as I have because they have lives, and don't read as fast as I do.

The Preemie Experiment said...

daedalus wrote: "Many of the disorders associated with low NO are also associated with intense itching. "

Very interesting. Paige is one big constand "itch". She never stops. She is covered, head to toe, with scabs and fresh wounds.

If you stare long enough, you can actually see bumps surface on her skin and then Paige scratches them. When she was younger I mentioned this to the doctor. He thought I was nuts until I made him sit and stare at her while she was sleeping in one of her EEG's. He was shocked to see the bumps surface, which woke up Paige and then she scratched them. She has had allergy tests to rule out anything. She was stuck 96 times in her back and all of the sticks were negative for allergic reaction.

Very strange.

The Preemie Experiment said...

Is there a way to measure NO in a person?

Dianne Maroney said...

daedalus2u You are completely correct when you look at energy from a scientific paradigm. I have, however, moved away from the strictly scientific paradigm and see things from a healers perspective, a dual perspective if you wish. I need to keep the nurse viewpoint for credibility and very much needed it when we wrote our book. The scientific format from which western medicine practices has given us many great advances, but it has also destroyed much of the healers (doctors, etc.) ability to be intuitive about their care and make choices for the patient that encourages healing rather than masking the problem (primarily medication-based treatment). Alternative healers give us more. There are many great researches such as Candice Pert, David Feinstein, Gary Craig, etc. who have tried to explain energetic healing from a scientific standpoint, and they have been somewhat successful but some of it still remains a mystery as it is difficult to quantify energy healing (and many believe as you do that is doesn't even exist). There are world organizations of scientists and therapists, doctors, etc. who gather together to share their knowledge regarding Energy Medicine, Energy Psychology and the like, as well as many fabulous books that have been written about these subjects. If it serves anyone to believe it is all placebo, so be it. I am just trying to give the people on this list an alternative to what is really not working for them. The energy healing work I do on infants, children, and adults gives them relief and helps with the healing process, even in none believers. I am happy to share with anyone who wishes free of charge when I can. If they would rather not and stick to western therapies that is their choice. Thanks, Dianne

Joan McKenty said...

Having experienced alternative methods of healing, including craniosacral therapy and structural integration, I can tell you, from a phenomenological perspective, that I experienced changes that were extremely beneficial, healing and restorative.

Perhaps an evaluation of my NO status at those times would also have shown a corresponding increase to beneficial NO levels. I also experienced parts of my mind at use that may ordinarily lay dormant - potentials of mind that we do not learn to access in our culture.

Perhaps in western culture and medicine we are not adept at acknowledging,utilizing and accessing our innate powers of mind in healing which would include our already demonstrated innate ability to increase NO levels through meditation.

As meditation increases NO levels, it is likely that other methods of healing also bring about physiological changes that affect NO levels.

This is different from a placebo effect as an identifiable physiological change has occurred. I also think that other factors, in addition to possible NO changes, are at work.


daedalus2u said...

No Joan, placebos do cause "identifiable physiological change". In some cases the effects of placebos are indistinguishable from normal healing. There is a lot of misunderstanding of what placebos are.

Raising NO levels via placebos, and raising it via mental practices are (to me), fundamentally "the same". Fundamentally they are release of NO via a mental process (understood, or not understood).

Adults may be able to learn how to access these mental processes for raising NO levels. Children and infants likely can't access these mantal processes volitionally. Placebos might work for children, but so does expressing love and affection, which has other beneficial effects.

One of the main regulators of the immune system is NFkB, which some have characterized as the "master switch" of the immune system. NFkB is inhibited by NO. I think that is why there are associations of an overactive immune system associated with low NO, including allergies, autoimmune disorders. That is why "stress" makes them worse, "stress" is a low NO state.

If "stress" makes something worse, that "something" is likely due to low NO.

When skin is damaged, it becomes red and inflamed. That inflammation is an indication of vasodilatation of blood vessels in the skin. That vasodilatation is due to NO. Scratching one's skin until it is raw might be "therapeutic" in that it elicits the generation of NO. In the "wild", scratching one's skin until it was raw would likely result in an infection. One of the first things that NFkB does in an infection is cause the expression of inducible nitric oxide synthase (iNOS). This can raise NO levels very high (as in septic shock). In milder form, some iNOS expression may raise basal NO levels and help some of these low NO disorders.

That is a very tricky balance to try and play, inducing skin infections to generate NO. In no way should this be attempted, it is far too risky. But that humans have evolved a behavior that would cause this to happens, suggests (to me) that there is some beneficial physiological response behind it. Precisely what that response is we do not know.

In the "wild", humans would have a skin biofilm of "my" bacteria. Scratching would only serve to move them around, and perhaps inoculate regions which have lost them.

Joan McKenty said...


What is the relationship between NO levels and the stress hormones cortisol and epinephrine? How do they interact? Is NO depleted by the stress hormones? Would efforts to decrease stress for infants, including infant massage, increase NO levels? Are measurable NO levels one physiological marker of stress induced changes in the organism?


daedalus2u said...

No Dianne, I don't dispute that what you call "energy healing" exists, I dispute your explanation of it as having to do with "energy" and mystical things that science cannot study or understand. Studying "energy healing" may diminish its effectiveness, but that is because its effectiveness is due to the placebo effect and any placebo can be just as effective as any other. That is why placebo controlled trials of "alternative therapies" don't show substantial differences between the "therapy" and placebo. They are fundamentally the same. One placebo may be more "effective" than another, but the therapeutic effect of placebos isn't in the placebo, it is in the mental processes of the person being treated. Denigrating "western medicine" may diminish the placebo effect invoked by those medical treatments, and by contrast may seem to improve the effectiveness of the placebos administered in "alternative therapies".

I see the therapeutic effects of placebos as a "zero sum". The maximum placebo effect that can be obtained occurs when NO is made sufficiently high that raising it more doesn't "do anything". Whether that state is achieved by 1, 2, 3, or more placebos is irrelevant to the therapeutic effect of the high NO state induced by those placebos. If a patient is paying for each placebo, dividing the therapeutic effect among multiple placebos only costs the patient more money. There may be some redundancy, in that one placebo may not "work" because of the "susceptibility" of the patient.

No doubt, if you "bad-mouth" a treatment modality, you will diminish its effectiveness as a placebo. I have no doubt that is what "alternative medicine practitioners" are accomplishing when they "bad-mouth" western medicine, as you are doing saying medication based treatments are only "masking the problem".

When you "bad mouth" a treatment modality, you turn it from a placebo into a nocebo. A nocebo is something that lowers NO and makes most disorders worse. It may be a "good business practice" to damage the placebo effectiveness of western medicine, so you can deliver the placebo effect via the treatments you are selling, but it really doesn't help patients.

The survival of VLBW and ELBW infants has improved dramatically over the past few decades. This improvement has not been due to "energy therapies", or other non-science based therapies. This improvement has come from science based and medication based treatments, not from placebos. Would a maximal invocation of the placebo effect improve outcomes still more? Yes, I think it would. I think that the best way to do that is via maximally invoking the placebo effect pharmacologically. I think that is what "my" bacteria can do.

daedalus2u said...


Stress is going to lower NO levels. All the stress-type hormones are going to do that. Some of them have their synthesis directly regulated by NO. NO inhibits the enzyme that makes them, with less NO, you get more of it. You can get into a positive feedback system where stress causes low NO, then the low NO makes the stress worse. In some cases that is a "feature", to robustly and rapidly turn on the stress compensatory pathways (which under times of real stress are beneficial and help the organism to compensate for the stress). But when the stress is over, it is time to come down and repair what ever damage accumulated during the stress.

Love and affection do raise NO levels and have lots of other good side effect too (Good and Good for you). I suspect that the urge to massage and hold infants may be (in part) an evolved mechanism to deliver the "proper" bacteria from the mother's skin to her infant. I am unaware of any adverse effects of being appropriately affectionate with a child. I think there are none.

Dianne Maroney said...

Well, I have appreciated this discussion very much and I am grateful for the opportunity to share with all of you. I am leaving tomorrow morning on a "trip of a lifetime" with my family and we are all so excited! I will touch back with all of you when I get back in case you have any questions or thoughts for me. PTSD is present in preemies and their parents, both Mackenzie and I have experienced it and healed from it. There is hope for treatment in both western and alternative medicine! I hope to show some of you how. Chow! Dianne

daedalus2u said...


Regarding ways to measure someone's NO level, there really are not any methods yet. There are lots of different species, with different effects (mostly unknown) in different tissue compartments, and those concentrations change over time. An interesting paper is

I know this researcher well, he does excellent and careful work. What he does is treat rats, then disassemble them and measure the various NO/NOx/RSNO/RNNO, etc species in those different tissues. What he finds are large changes over quite modest lengths of time.

The RSNO, RNNO pools that he measures might be hundreds (thousands?) of different species, all of which are different. No doubt some are regulated up, and some are regulated down. He is looking at quite macroscopic samples, obviously the sum of thousands (millions?) of cells. No doubt different cells have different levels, and even different parts of cells have different levels still.

How do all those things change over time? Obviously very complexly. What is interesting is that the apperance of the rats doesn't change during this time period. As the NO chemistry is going up and down, physiological parameters that are easily observed stay constant. That includes parameters that are known to be highly regulated by NO, such as blood pressure.

This tells me several things
1. NO physiology is highly regulated.
2. NO physiology is regulated with a short time constant.
3. As NO phsyiology is regulated, the "important parameters", such as blood pressure stay "the same".
4. NO phyiology is highly "coupled", that is, you can't change just one aspect of it without changing something else.
5. There is absolutely no way you are going to substitute some artificial regulation of NO physiology for the natural NO regulatory systems.

Essentially the only compartment that can be measured in humans is blood. By far most of the "stuff" that is happening is happening outside of the blood stream. Something that you can't measure in humans.

The measurements that he does, have to be done very quickly, less than a couple minutes, (in low light levels) or the results mean nothing. The NO species are very labile and can't be measured in stored blood.

The difficulty in measuring some of these things is why there is so much controversy in the NO research field, and why there isn't universal acceptance of the importance of basal NO levels.

Kelly Joyce Neff said...

Thank you for this.
I am a 44 year old adult preemie (I was a twin, 1lb 10 oz at birth 30 weeks gestational age) and I happened on this site because of sudden insight - that my lifelong depression and anxiety may have been something to do with being premature - which seems obvious just at this moment.

I suffer very few physical effects of prematurity, for which I am grateful; I am not blind, deaf, or retarded (some of the things which were posited as possible). I was, in fact, a Mensa kid. I do have asthma chronic bronchitis. But the mental health, not so good.

Thanks for the confirmation, and may God bless you and Paige.

The Preemie Experiment said...

Dear Kelly,

I am so glad that you found us. I am sorry for your struggles. Please know you are not alone. I hope you will join in during future discussions. There are docs who are reading and I am so desperately trying to get them to see that there ARE long term mental health issues related to prematurity. This needs to be addressed in order to help future preemies.

I've enjoyed reading your blogs.

Please email me if you would like to talk further.

Also, if you go to the main page of my blog, you will see a category of blogs written by "former preemies". The content of their blogs may be helpful in your journey. And, there is also an on line support group for former preemies, run by Sarah Blake, who is also a former preemie.


Kelly Joyce Neff said...

Dear Stacey,
After having written you a note about not being about to find this posting (the middle-aged brain gets there eventually) I have found this. Thank you for your comments, and your everlasting kindness.
The adult preemie sites shall I suspect be very helpful.

As for doctors' reading, let them listen well: I was part of an 'experiment' at UCLA for the first nine years of my life. At NO point did anyone expplain to me or my parents the possible long term mental or social consequences of prematurity (and I was also rather 'behind' in several areas of motor development until I was a teenager.)

Granted, I was born in 1963, but you'd think we'd have been given the results of this study for which my parents sacrificed their time and I my security - I found the whole thing terrifying.

To parents of preemies now, I would say: ask questions, never stop until you get an answer. You and your child have the right to information that will help your lives.

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

Nice topic!

Lindasy Rosenwald said...

Lindsay Rosenwald Rosenwald, 33, specializes in finding and underwriting promising medical and biotechnology companies

Judy B said...

Found this post years late- the link to the article is not working. I'm very interested in reading it if possible.

judychrz at gmail

kalli house said...

Thank you for the article. I was born 4 months early (preemie bad at math here) and 1 lb 8 oz. back in 1986. I had a collapsed lung and was jaundiced. I have scars from needle marks, and other things all from being in the NICU for 6 months. I am fairly adjusted, however my stress level is crazy. I used to have a high pain tolerance but in 2012 I got diagnosed with fibromylagia and myofasical, stemming from an injury but my D.O says it could possible be from me being a preemie, he is intrigued but there is not a lot of light on this subject. I am happily married no kids (stress again), and work part-time due to my medical condition but the stress is getting worse. I've never seen a psychiatrist and I cannot take most anxiety meds due to an enzyme I have that counteracts most meds I take. Nice huh?
I just wanted to share my experience. Thank you and blessings.

Unknown said...

I'm a bit late to the party here...The link is no longer active. Does anyone have a new link for it? My twins were both micropreemies. Born at 24 weeks at just 1lb10oz and 1lb11oz. My daughter had developed ROP and hydrocephalus. She had 3 surgeries before 3 months old. They are 11 months old now, 7 adjusted. My daughter has fits some nights; she sobs in her sleep. I can't calm her and I have to wake her up and reassure her that she is with me and she is safe. I'm questioning if this could be from all the trauma she has suffered. Is there any extensive research in the area of preemie PTSD? I've just begun looking into but most articles are about the parents stress with the NICU.