[6kiddos]

I posted this link on the special needs adoption board this morning and I thought I should also post it here (since few people tend to visit that board). I found a website that shows a "normal" baby face and morphs it into a face with FAS (fetal alcohol syndrome). It takes a while to load up, but be patient...it is worth the wait.

http://www.fhs.mcmaster.ca/pblonline/fas.htm

We adopted 2 children with FASD (fetal alcohol spectrum disorder), one has "the face" and one does not. Both have permanent brain damage from prenatal exposure to alcohol. Most people with FASD do not have facial features because the face is formed during a short period of the pregnancy and if no drinking occurred during that time the disability will not be visible physically. There needs to be so much more education about FASD...most teachers and even doctors that we deal with still don't understand our children or their needs.

[2boyz1girl]

I haven't checked out that site yet, but just wanted to thank you for the link. My daughter was alcohol exposed and I am in disbelief that they HAVE to show facial features to be diagnosed... You are absolutely right -- there needs to be so much more education about FASD. I was so disappointed with her genetic evaluation. All the geneticist told me was that she didn't have the facial features, but still could develop behavioral problems and learning disabilities -- DUH! The little bit of information I have searched so hard for, is far more than what any pediatrician I have taken my children to has known.

[L-A-J-C-R-C]

2boyz: our 2 kids were exposed to alcohol too and do not have the facial features. It is our understanding that FAE cannot be diagnosed until school age because that's when learning issues can be noticed. Our kids are hyperactive and have a host of other issues that are signs of FAE so we're working under the assumption that they do suffer FAE, not that it does anything except to help me understand why I have so much trouble parenting them lol.

You are right, so much more needs to be learned about this devastating disease these kids suffer.

Michelle

[2boyz1girl]

I find myself attributing every little negative behavior to the alcohol exposure . I've been told that some effects may not show up until even into adolescence and adulthood! Despite the fact that it could greatly benefit her, dd doesn't qualify for Early Intervention here because she's not showing any significant delays.

Does anybody know anything about Neuro-Psych evaluations? Dr. Art (from this forum) said they can actually do tests to see which, if any, parts of the brain were effected. Doesn't it just seem that if this is available, it should be routine for alcohol exposed children, and our pediatricians should know SOMETHING about it?

I keep reading that alcohol exposure is the greatest cause of mental birth defects, yet I feel like it's this mystery disease that nobody cares to learn about .

[redhedded]

2boyz1girl, Fetal alcohol exposure is the number one cause of mental retardation worldwide. There has been tremendous comprehensive research performed within the international community for more than 30 years, beginning with an attempt by French researchers in the late 1960s to characterize the abnormalites that resulted from such exposure. The fact is the effects of alcohol ingestion on a fetus are still in some ways a mystery; of course, the dangers have long been known, since the Roman and Greek empires, but there is no table of useage, as alcohol is metabolized differently by each person. There is no guarantee of result or outcome.

What is known is that alcohol, unlike many other drugs, may have a direct toxic effect. The metabolic process and chemical result possibly interferes with the normal blood flow and regulation of the placenta. Chronic hypoxia (decreased oxygen) may be the cause of many alcohol related physical abnormalities. First trimester use of alcohol may result in more organ abnormality, such as heart and kidney dysfunction. Whereas, second and third trimester exposure may result in more behavioral and psychological consequences.

To be diagnosed with Fetal Alcohol Syndrome, a child must meet one of the following criteria: prenatal or post natal growth retardation, craniofacial anomalies or central nervous system involvement (microcephaly, brain abnormality seen with imaging, hypotonia or neurological disorder). FAS is often accompanied by many physical issues such as visual and auditory damage, heart and urinary disease; these are the Profound MR and Severe MR children that I spent much of my career working with. A child with in utero exposure but without any of the aforementioned effects is considered Fetal Alcohol Effect or Fetal Alcohol Effect Spectrum Disorder. There are challenges of diagnosis even with craniofacial evidence; as the structure of the face changes, such evidence may not easily be read until a child reaches almost one year old. Further as children age and reach adolescence and adulthood, these facial anomalies often seem to disappear, so it is hard to examine an adult with unknown or suspected effect by looking at the facial structure.

FAE is much more complicated. These children are at huge risk for ADD and ADHD; they may lack impulse control or an ability to understand general social expectation. They may not be adaptable to change or understand consequence and action. However, many of these characteristics can be observed in the general childhood population that has not been alcohol exposed; therein lies the dilemma. Many (or most) of these indicators do not become obvious until a child enters the structure of a classroom and is unable to keep up, fit in or adapt. Many times early intervention services are provided more to those with FAS who clearly need additional tools for motor and language development, because such areas are so delayed.

Neuropsychological evaluations can be an important tool; however, there are some legitimate concerns about them, first and foremost, the reliability and validity of testing. How do results translate into real life expectation and outcome? Such evaluations are really extensions of intelligence testing and examine the ability to reason and problem solve, to understand and express language, the speed at which information is processed, the core of memory functioning, short and long term, organizing ability and motor visual coordination. The most commonly used evaluations are the Wechsler Intelligence Scale for Children-IV (WISC-IV) and the Stanford-Binet Intelligence Scale-IV. These tests are often used to determine the efficacy of medications, to judge the value of multidisciplinary interventions and to procure such tools in dementia patients, traumatic brain injury patients and neurologically degenerative diseases such as Multiple Sclerosis.

In addition, these evaluations are often used really as tools to predict future performance based on the strengths, abilities and challenges of current functioning. They are more sensitive than MRI or CT scans because they examine what IS happening based on observation; however, by themselves, without being accompanied by visual imaging or physical examination, they may serve little purpose.

I think that the best that you can do for your daughter is be her advocate, which you are with passion, doing. You can be aware of the possibilities of effects and consequences and act swiftly and with conviction when/if such issues arise. However, in the interim, try not to over analyze her responses and behaviors too much. I know it is hard. My own dd, who was not exposed to any substance in utero, is very difficult. She is believed, even this early, to be highly gifted and is unusually sensitive; she will retreat and withdraw if she is upset, most often when empathizing with others (ie. when a girl fell off of the monkey bars at the park and got hurt or when her friend got hit by another little person.) She sleeps only 8 hours a day and does not need more; though sleep disorders is very common among alcohol exposed children. She has a complete inability to calm herself when she becomes angry or upset; this is not impulse control but rather her personal sensitivity. She is not adaptable to change. I think it dangerous to presume too much too early about why. While some of these issues are common with gifted kids, they may just be her personality. Further, it may be the typical two year old stage that she will outgrow without interference. All I can do as a mother is provide her with the tools for success, be cognizant at all times of her eccentricities, enable her to grow and gain the skills to function in a typical setting and to provide the best and least stressful environments for her that I can throughout a regular day.

Best of luck to you.

[Jensboys]

And you know what is crazy ... it was only LAST WEEK that the Surgeon General of the USA issued a warning FOR THE FIRST TIME that drinking any amount of alcohol while pregnant can be dangerous. LAST WEEK!!!!

I would say that the alcohol lobby is just as powerful as the pharmaceutical lobby!

[SadieAnn]

First, thank you for the link.

So what do you say to a pediatrician who says that most babies born with alcohol related issues had bmoms who drank heavily throughout their pregnancy.

At the start of our adoption road I met privately with a pediatrician and asked lots of questions about alcohol & drug exposure. And this was her response to me regarding alcohol.

[Volfe]

I just wanted to respond to Jensboys post:

Local govt's have full control / responsibility of issuing warnings, etc. So although the US Surgeon General might have made an official warning last week, here in the bars and stores of New Orleans, BIG signs have been posted for yrs where alcoholic bevs are sold that drinking can cause serious prenatal Defects. I don't know if they help... but I like to think they do.

[ucme4dk]

Wow this post has been very informative to me. Red I can't believe the vast knowledge that you have on this subject. It is truly devastating to know the far reaching effects that alcohol has on all of these innocent children. Thanks 6kiddos for bringing this subject to light and starting this thread.
Sincerely,

[2boyz1girl]

Thanks Red! I'll have to print that out and reread to absorb it all. I wasn't meaning to imply that there hadn't been research done, I've read everything I can find (understood is a different story), but that the general public, i.e. pediatricians, really aren't very helpful. When we moved here I called around to several doctors that would take both medicaid and our insurance (which my boys were on). During my calls I asked if any of the pediatricians had knowledge or experience in dealing with alcohol exposed children, and I got the same answer -- "Dr. So-and-So handles all kinds of special needs." I took dd to the Dr. who sounded the most knowledgable and he was quite a disappointment. I know there is a Children's Treatment Center in Chicago that specializes in FASD, but nothing here in Las Vegas. I had greatly hoped that the genetic specialist would be able to provide me with more answers (we only waited 9 MONTHS to see her ), but all she was interested in were the features.

I do know that not every negative thing dd does is due to alcohol exposure -- it's just nice to have something to blame it on . She's actually doing VERY well, her speech is slightly delayed, but she has picked up on things like her colors and shapes a LOT faster than my 4-yr-old (very NON-exposed) did. I have long since accepted that if she is effected, she is effected and the only thing I can do about it is be prepared to deal with issues as they come up. I just wish there was more readily available information and support to know HOW to deal with these issues.

[redhedded]

Sadie, Just wanted to respond to your question. I think the information that the pediatrician gave you is both naive and inaccurate. The fact is that early occasional (ie. social) drinking can cause serious defects, even if drinking is ceased during the pregnancy. Binge drinking even one time during a pregnancy is still being studied but can cause serious defects. Drinking socially, which was, frankly, very very acceptable thirty years ago can cause serious defects but often does not. It is impossible to know what the long term effects are from any amount of drinking by any specific person. Some women whose children are born with FAS drank heavily throughout their pregnancies; some drank heavily then stopped though this is sometimes a less likely scenario. You can be pretty sure that early identification of facial anomalies combined with neurological issues presenting as hypotonia and physical health issues are an indication that heavy drinking occurred and may have irreversible effects on the brain and the body.

Having said that, there has been additional research about children being placed (for adoption or fostered) outside of the birth situation where alcohol is not used regularly. These children consistently experience a better outcome, clearly because they are advocated for, provided with early detection and intervention and placed in a healthy physical, emotional and intellectually stimulating environment where they are given the opportunity, the confidence and the tools to thrive. One cannot underestimate the importance and value of a healthy and knowledgeable environment that follows, acts and addresses issues as they arise.

2boyz: I think, well, Pediatricians are not knowledgeable about a lot of stuff, including the issues that my own dd faces. You are the first and foremost and most significant advocate that your child will ever have. Now, we were living in Vegas when Sai was adopted; my dh was transferred there. Services are archaic, from developmental disabilities to mental health services; the public school system is atrocious. Where else can a child be encouraged to quit school at 13 and assured a job making far more dealing cards than with a college degreee. It can be a great opportunity for some, but needs some work on the priorities. Don't get me started on the town that has money to burn yet has a zoo that could be better equipped and maintained in my own backyard. That is a travesty! However, the medical field is changing, because many really gifted and progressive physicians have moved there due to the low cost of living (or what was low 5 years ago) from expensive cities like LA, San Francisco, Boston, Chicago and New York. Keep looking; ask around. Contact UCLA about neuropsychological testing if you are really interested in pursuing the most advanced services that you can for your dd. Remember the squeaky wheel gets the grease. Most of all see if you can find a group of parents who are raising alcohol exposed children. Local MHMR might be able to put you in touch with such an advocacy group. These parents are the real experts. They do not know what will work for your child or what to expect, but they will have tried many things and can be a vast resource of information and support.

[skootinalong2]

I took a class offered through our county to foster parents on FASD. They are now saying that the children who are at the greatest risk of FASD are the children of the working middle class. A drink after work or at an office party is very common. Like Red said, it depends on how our body processes the alcohol etc... Believe it or not, OBs are still telling women who are having mild contractions to go home and have a "drink" to relax. My DDs Dr. told her to do it just two years ago!!! You might try calling a Public Health Nurse and asking for the name of a Ped. who knows about FASD. We have a Dr. here that is very knowledgeable (did I spell that right?) about drug and alcohol exposure in children. I hope you find the help you need.

Teralyn

[mumofone]

Teralyn, I had a friend whose own doctor told her it was "okay" to have a glass of wine once in a while. She asked my opinion of this. I told her, "no way". It is not worth the chance. One drink can cause damage, and this is something that is totally preventable.

We can change the system, but we have to change the attitudes of the doctors first.

[2boyz1girl]

Actually, my mother lives in a small town that, at the time she was having her children, did not have an OB who would do c-sections. When she was pregnant with me (her 4th, all c-section) she was contracting early, and her dr. told her that he could either admit her to the hospital I was to be born at (three hours away), or she could take a shot of... something, (see how much I know about alcohol!) every time she started contracting. That's what's wrong with me !

Red, I was told that there IS a FAS support group here in town, but the person I was told to contact, never contacted me back. Guess I should keep trying . I think I've really pretty much given up on finding a pediatrician who is helpful, but I have been considering contacting UCLA about a neuro-psych eval. I think I've just been really discouraged with everybody telling me, "she LOOKS fine, stop worrying". I don't WANT her to have a diagnosis, and I don't want to push the issue if she really is just fine. But I feel like I'm being irresponsible if I just walk away and assume she wasn't effected. I've read reports on the research you were referring to about the children who are removed (very hopeful). One of the latest articles I read said that the children who have had the best outcomes are the ones who not only were placed in stable homes, but who had an early diagnosis as well.

We've stayed away from the zoo here. We've heard how horrible it is, there were rumors that it was closed, don't know though. I won't even get started about the schools .

[6kiddos]

I don't know why doctors, teachers and even social workers are still so misinformed about FASD...this is not a rare condition by any means! Look at these numbers (found here- http://www.come-over.to/FAS/USbirths.htm )

On any given day
in the United States...

10,657 babies are born
3,890,000/yr: US Census Bureau



1 of these babies is HIV positive.
5/100,000: Center for Disease Control and Prevention

3 of these babies are born with Muscular Dystrophy.
1 in 3,200: Muscular Dystrophy Association

4 of these babies are born with Spina Bifida.
3.2/10,000: Center for Disease Control and Prevention

10 of these babies are born with Down Syndrome.
1/1,000: Center for Disease Control

20 of these babies are born with Fetal Alcohol Syndrome. 19.5 per 10,000: Natl Org. of Fetal Alcohol Syndrome

100 of these babies are born with Alcohol Related Neurodevelopmental Disorder. 1/100: Teratology 1997 Nov;56(5):317-26


***And sadly some doctors are still telling women that moderate drinking is OK or they are avoiding the subject altogether. (Many pediatricians don't ask about alcohol exposure during pregnancy either and children often do not receive a proper diagnosis because of this.) I looked on several message boards for pregnant women a while ago and printed 8 pages of comments like these...(several women did post correct info, but some of the other women actually got mad when it was suggested that they not drink at all during pregnancy!)

"my doctor had told me as long as I stay away form hard liquor and dont get drunk every night, I would be alright.Beer and Wine does not have that much alcohol in it, so I guess what you and your doctor are comfortable with, is ok. Tell everyone else to mind their own business."

"As my grandma once told me... "if you satisfy that craving for a beer now, more than likely your child will turn out non-alcoholic or not even liking alcoholic beverages."

"I had my second baby in England where all the "experts" agree that one unit of alcohol a day will not hurt a baby. And when I started nursing my first baby, my mother, a New Zealander, suggested a pint of stout (like Guinness) not only as a good source of nutrition but also to help me relax and to encourage "let down". So go read about this topic on few U.K. websites to reassure yourself and then go ahead and pull that pint. Once in a while will not hurt you or your baby."

"I am 35 weeks and every once in a while I enjoy a glass of wine. To mix things up I like to have a wine spritzer (half glass of wine/half sprite) or sangria (half glass of red wine mixed with orange or pineapple juice). This way you can have two and if you put them in a tall glass on ice with some fruit, you don't get those dirty looks. "

"My mother drank throughout when I was in the womb becuase she didnt realise she was pregnant until realy late! I was premature but other than that I healthy and I am an intellegent woman - my brain didn't suffer! There is a big difference between having a couple of drinks and alcohol dependency, truly alcoholic mothers can definatly damage the foetus but the odd glass of wine wont hurt after the first 12 weeks. In the first 12 weeks drinking apparantly increases the risk of miscarriage by 50%. I am 15 weeks pregant and am careful to keep to half a unit a day if I do drink at all, which isnt often. "

I could go on and on...