FASD in bio kids....

[Anonymous]

(reformatted for clarity; I will ask Jeff to delete the prior verion)

Anonymous wrote:
FASD is an umbrella term that refers to kids with some kind of developmental issue that can be traced back to alcohol. FASD does not have clear diagnostic criteria at this time.

Sort of. The umbrella term of FASD encompasses several diagnoses related to prenatal alcohol exposure, but it is true that it is itself not a diagnosis. However, the diagnoses within that umbrella do have specific diagnostic criteria.

FAS is Fetal Alcohol Syndrome, the diagnostic criteria for FAS from the CDC are:

1. Specific physical features
2. Growth retardation of some sort
3. Either brain differences (e.g. on an MRI) or behavioral/developmental/cognitive differences

You can see them here: https://www.cdc.gov/ncbddd/fasd/diagnosis.html

It's a simplified version. You can see the details in the blurry middle picture I posted, or at the AAP PDF link.

ARND is a term that is used to describe those people who have FASD without meeting FAS criteria. There are no formal diagnostic criteria for ARND.

There are formal diagnostic criteria for ARND (and ARBD). See the link referenced above.

However, generally doctors are not going to put that label (and thus the FASD label) on a kid unless there are either physical features or documentation of a history of alcohol abuse. If mom comes in, swears she didn't drink, and there's no physical evidence, then the kid will get a different diagnosis that explains their symptoms.

This is sort of correct. There isn't a diagnosis within the FASD umbrella of diagnoses that can be made without at least either documented prenatal exposure or certain physical findings, or both. Specifically, both ARND and ARBD require documented prenatal alcohol exposure for either of those diagnoses to be made.

But there are ways to document prenatal alcohol exposure even if the "mom comes in [and] swears she didn't drink." See the third picture above.

A individual kid with ARND might not have the physical features, or might have some but not all of the physical features. But their lack of physical features doesn't correlate with their developmental status. A kid can have ARND and significant intellectual disability, while another kid can have FAS with no intellectual disability.

Exactly, with the clarification that the diagnostic criteria for ARND only rely on documented prenatal exposure and specific neurobehavioral impairment, without any mention either way of physical exam findings (that is, they are as relevant to this diagnosis as hair color). Which is not to disagree, but to elaborate.

[Anonymous]

Anonymous wrote:(reformatted for clarity; I will ask Jeff to delete the prior verion)

Anonymous wrote:
FASD is an umbrella term that refers to kids with some kind of developmental issue that can be traced back to alcohol. FASD does not have clear diagnostic criteria at this time.

Sort of. The umbrella term of FASD encompasses several diagnoses related to prenatal alcohol exposure, but it is true that it is itself not a diagnosis. However, the diagnoses within that umbrella do have specific diagnostic criteria.

FAS is Fetal Alcohol Syndrome, the diagnostic criteria for FAS from the CDC are:

1. Specific physical features
2. Growth retardation of some sort
3. Either brain differences (e.g. on an MRI) or behavioral/developmental/cognitive differences

You can see them here: https://www.cdc.gov/ncbddd/fasd/diagnosis.html

It's a simplified version. You can see the details in the blurry middle picture I posted, or at the AAP PDF link.

ARND is a term that is used to describe those people who have FASD without meeting FAS criteria. There are no formal diagnostic criteria for ARND.

There are formal diagnostic criteria for ARND (and ARBD). See the link referenced above.

The link that says this?

CDC wrote: The guidelines were developed for FAS only. CDC and its partners are working to put together diagnostic criteria for other FASDs, such as alcohol-related neurodevelopmental disorder (ARND)external icon

I am not seeing where it links to specific diagnostic criteria. I see a general description of ARND and ARBD, but not criteria. Or are there criteria from another organization?

However, generally doctors are not going to put that label (and thus the FASD label) on a kid unless there are either physical features or documentation of a history of alcohol abuse. If mom comes in, swears she didn't drink, and there's no physical evidence, then the kid will get a different diagnosis that explains their symptoms.

This is sort of correct. There isn't a diagnosis within the FASD umbrella of diagnoses that can be made without at least either documented prenatal exposure or certain physical findings, or both. Specifically, both ARND and ARBD require documented prenatal alcohol exposure for either of those diagnoses to be made.

But there are ways to document prenatal alcohol exposure even if the "mom comes in [and] swears she didn't drink." See the third picture above.

I don't know what you mean by third picture above, but by "physical evidence" I mean either signs on the child (e.g. small philtrum, wide set eyes) or physical evidence that the mother has abused alcohol (e.g. a blood test taken while she was pregnant). Without either of those, or verbal report, or I guess maybe an eye witness, I have never seen them diagnose FASD.

A individual kid with ARND might not have the physical features, or might have some but not all of the physical features. But their lack of physical features doesn't correlate with their developmental status. A kid can have ARND and significant intellectual disability, while another kid can have FAS with no intellectual disability.

Exactly, with the clarification that the diagnostic criteria for ARND only rely on documented prenatal exposure and specific neurobehavioral impairment, without any mention either way of physical exam findings (that is, they are as relevant to this diagnosis as hair color). Which is not to disagree, but to elaborate.

[Anonymous]

Here you go:

Anonymous wrote:The original is at
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=12&ved=2ahUKEwiypY-V--_jAhX6ITQIHXSnAH8QFjALegQIBRAB&url=https%3A%2F%2Fpediatrics.aappublications.org%2Fcontent%2Fpediatrics%2Fearly%2F2016%2F07%2F25%2Fpeds.2015-4256.full.pdf&usg=AOvVaw2KPPS-l04WfHft2T3TCsxk
(pdf)

The link from the person I was replying to (you, or maybe someone else) was an abbreviated version, but it also had a link to a more detailed version. Unfortunately, being 15 years old, it was quite outdated.

My link above is to a pdf of "Updated Clinical Guidelines for Diagnosing Fetal Alcohol Spectrum Disorders, PEDIATRICS Volume 138, number 2, August 2016." It reflects the current diagnosing standards.

[Anonymous]

Anonymous wrote:
But there are ways to document prenatal alcohol exposure even if the "mom comes in [and] swears she didn't drink." See the third picture above.

I don't know what you mean by third picture above, but by "physical evidence" I mean either signs on the child (e.g. small philtrum, wide set eyes) or physical evidence that the mother has abused alcohol (e.g. a blood test taken while she was pregnant). Without either of those, or verbal report, or I guess maybe an eye witness, I have never seen them diagnose FASD.

The pictures referenced are near the bottom of page 7. The first is the flow diagram of diagnosis (abbreviated), the middle one is a very long and blurry list of the various diagnostic criteria, and the last is the accepted means of documenting prenatal alcohol exposure without the relating of it directly by the mother.

There could be a lot of reasons why you might not have seen the full range of diagnostic methods. The people you have watched might have been using outdated criteria, or they might not have specified all of the thought process, or you might not have seen children evaluated who fell outside the criteria you expected but still within guidelines, or there might be political or therapeutic reasons for a given practitioner, or what have you. Nonetheless, these are all accepted ways to make the diagnosis.

It's complicated, and even moreso now that it was 15 years ago.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
But there are ways to document prenatal alcohol exposure even if the "mom comes in [and] swears she didn't drink." See the third picture above.

I don't know what you mean by third picture above, but by "physical evidence" I mean either signs on the child (e.g. small philtrum, wide set eyes) or physical evidence that the mother has abused alcohol (e.g. a blood test taken while she was pregnant). Without either of those, or verbal report, or I guess maybe an eye witness, I have never seen them diagnose FASD.

The pictures referenced are near the bottom of page 7. The first is the flow diagram of diagnosis (abbreviated), the middle one is a very long and blurry list of the various diagnostic criteria, and the last is the accepted means of documenting prenatal alcohol exposure without the relating of it directly by the mother.

There could be a lot of reasons why you might not have seen the full range of diagnostic methods. The people you have watched might have been using outdated criteria, or they might not have specified all of the thought process, or you might not have seen children evaluated who fell outside the criteria you expected but still within guidelines, or there might be political or therapeutic reasons for a given practitioner, or what have you. Nonetheless, these are all accepted ways to make the diagnosis.

It's complicated, and even moreso now that it was 15 years ago.


I am confused. As I read it the charts still say that you need either to see physical features on the child OR something that supports the idea that the mother drank during pregnancy. The chart on page 4, if you follow the pathway that leads from symptoms to no documented exposure, to no dysmorphology, you get "other diagnoses" which implies that kids who hae neither of those things don't get the diagnosis. But then you say that there are kids who have neither of those things but are still within the guidelines. Can you tell me where those kids are on the chart? Or is there another chart?

[Anonymous]

But there are ways to document prenatal alcohol exposure even if the "mom comes in [and] swears she didn't drink." See the third picture above.

I don't know what you mean by third picture above, but by "physical evidence" I mean either signs on the child (e.g. small philtrum, wide set eyes) or physical evidence that the mother has abused alcohol (e.g. a blood test taken while she was pregnant). Without either of those, or verbal report, or I guess maybe an eye witness, I have never seen them diagnose FASD.

The pictures referenced are near the bottom of page 7. The first is the flow diagram of diagnosis (abbreviated), the middle one is a very long and blurry list of the various diagnostic criteria, and the last is the accepted means of documenting prenatal alcohol exposure without the relating of it directly by the mother.

There could be a lot of reasons why you might not have seen the full range of diagnostic methods. The people you have watched might have been using outdated criteria, or they might not have specified all of the thought process, or you might not have seen children evaluated who fell outside the criteria you expected but still within guidelines, or there might be political or therapeutic reasons for a given practitioner, or what have you. Nonetheless, these are all accepted ways to make the diagnosis.

It's complicated, and even moreso now that it was 15 years ago.

I am confused. As I read it the charts still say that you need either to see physical features on the child OR something that supports the idea that the mother drank during pregnancy. The chart on page 4, if you follow the pathway that leads from symptoms to no documented exposure, to no dysmorphology, you get "other diagnoses" which implies that kids who hae neither of those things don't get the diagnosis. But then you say that there are kids who have neither of those things but are still within the guidelines. Can you tell me where those kids are on the chart? Or is there another chart?


No. I said you might not have seen certain situations because you might not have seen diagnosis of children "outside the criteria you expected but still within guidelines."

I'm not entirely sure what your expectations were/are, given the guidelines you linked. It's possible you only understood or noticed what you had reference for. (That's not intended as a slam. If someone is using criteria you've never heard of and they don't specify each step out loud, of course you wouldn't fully understand what was going on.)

[Anonymous]

Anonymous wrote:

But there are ways to document prenatal alcohol exposure even if the "mom comes in [and] swears she didn't drink." See the third picture above.

I don't know what you mean by third picture above, but by "physical evidence" I mean either signs on the child (e.g. small philtrum, wide set eyes) or physical evidence that the mother has abused alcohol (e.g. a blood test taken while she was pregnant). Without either of those, or verbal report, or I guess maybe an eye witness, I have never seen them diagnose FASD.

The pictures referenced are near the bottom of page 7. The first is the flow diagram of diagnosis (abbreviated), the middle one is a very long and blurry list of the various diagnostic criteria, and the last is the accepted means of documenting prenatal alcohol exposure without the relating of it directly by the mother.

There could be a lot of reasons why you might not have seen the full range of diagnostic methods. The people you have watched might have been using outdated criteria, or they might not have specified all of the thought process, or you might not have seen children evaluated who fell outside the criteria you expected but still within guidelines, or there might be political or therapeutic reasons for a given practitioner, or what have you. Nonetheless, these are all accepted ways to make the diagnosis.

It's complicated, and even moreso now that it was 15 years ago.

I am confused. As I read it the charts still say that you need either to see physical features on the child OR something that supports the idea that the mother drank during pregnancy. The chart on page 4, if you follow the pathway that leads from symptoms to no documented exposure, to no dysmorphology, you get "other diagnoses" which implies that kids who hae neither of those things don't get the diagnosis. But then you say that there are kids who have neither of those things but are still within the guidelines. Can you tell me where those kids are on the chart? Or is there another chart?

No. I said you might not have seen certain situations because you might not have seen diagnosis of children "outside the criteria you expected but still within guidelines."

I'm not entirely sure what your expectations were/are, given the guidelines you linked. It's possible you only understood or noticed what you had reference for. (That's not intended as a slam. If someone is using criteria you've never heard of and they don't specify each step out loud, of course you wouldn't fully understand what was going on.)

I said I have never seen a child diagnosed with FASD who didn't have physical features AND didn't have a documented history of prenatal alcohol exposure (e.g. mom said she didn't drink, and there isn't something like a documented blood test during pregnancy to call into question her story). Have you seen a child who doesn't meet either of those criteria who has gotten a FASD diagnosis? The chart you linked seems to imply that you do need one of those two things. What lead them to conclude that the issue was FASD?

[Anonymous]

Anonymous wrote:
I said I have never seen a child diagnosed with FASD who didn't have physical features AND didn't have a documented history of prenatal alcohol exposure (e.g. mom said she didn't drink, and there isn't something like a documented blood test during pregnancy to call into question her story). Have you seen a child who doesn't meet either of those criteria who has gotten a FASD diagnosis? The chart you linked seems to imply that you do need one of those two things. What lead them to conclude that the issue was FASD?

I don't disagree that the diagnosis requires either one or both of 1)certain physical features and/or 2)documented history of prenatal exposure. That's just what the current criteria require.

I did disagree with the following claims, whether made by you or someone else:

1) "If mom comes in, swears she didn't drink, and there's no physical evidence, then the kid will get a different diagnosis that explains their symptoms."
[there are other criteria for establishing prenatal evidence of exposure even if the woman "swears she didn't drink," including eyewitness accounts of the drinking -- which it looks like someone (you?) added later, but then the expanded list was not what I was disagreeing with, just the original claim]

2) FASD does not have clear diagnostic criteria at this time. [the updated guidelines give clear diagnostic criteria for all diagnoses included under FASD]

3) There are no formal diagnostic criteria for ARND at this time [there are]

4) The 2004 criteria that were linked were current and accurate [they are not]

And I couldn'tt explain why you weren't familiar with the full range of current guidelines for diagnoses, other than that you may not have seen much, or you didn't understand fully what was going on, or the people you draw information from might not be up to date.

But no, I do not disagree with the claim that the diagnosis requires either one or both of 1)certain physical features and/or 2)documented history of prenatal exposure. Again, that's just what the current criteria require.

I trust we are on the same page now?

[Anonymous]

I have read the entire thread, although the medical stuff is over my head a bit. To answer OP's origional question, no, I don't think drinking or anything I did contributed to my dd's ASD.

I actually do not drink at all (I just don't like it) so dd was never exposed. FASD was never brought up. I don't really know if light, early drinking can cause it. I mean, I don't drink, but lots of women have some alcohol before they know they are pregnant. You'd think there would be a ton of FASD if that was the case.

Sometimes, these kinds of questions are upsetting. There was that study out a few months ago about some possible link from foods to autism (it was weak and not reliable imo). So now it's like, hey did that hotdog I had on the Fourth of July in 2014 cause her ASD? I KNOW it didn't but it messes with you. As a mom, I can't wonder all the time, and for us, it's certainly genetic.

[Anonymous]

I know that people tell the general public ASD when there are different more scary diagnoses. (eg Adam Lanza) I would think a bio mom would only reveal a FASD diagnosis to her closest and dearest friend.

[Anonymous]

Yikes! After reading up on the physical description, I had to examine my DS. He doesn't have developmental delays but he has dyslexia. Some of the physical characteristics are similar to our ethnic blend - as in we're part Latino. He was wide-spaced eyes that are slightly almond shaped (as do I) and he has a slightly flatter nose than Caucasians, which also is within the range of normal for Latinos. That fold above his mouth is there but isn't super deep. His chin seems normal. He has a full upper lip.

I don't really think he has FAS. He doesn't have anything similar to ASD/ADHD. Just plain boring dyslexia. But, those physical characteristics caught my eye. He looks like me, though, and I don't have FAS. My mom didn't drink. I can't recall really drinking when I was pregnant. Maybe 1-2 drinks all together for the full 9 months?

[Anonymous]

How does one develop dyslexia?

[Anonymous]

Anonymous wrote:Yikes! After reading up on the physical description, I had to examine my DS. He doesn't have developmental delays but he has dyslexia. Some of the physical characteristics are similar to our ethnic blend - as in we're part Latino. He was wide-spaced eyes that are slightly almond shaped (as do I) and he has a slightly flatter nose than Caucasians, which also is within the range of normal for Latinos. That fold above his mouth is there but isn't super deep. His chin seems normal. He has a full upper lip.

I don't really think he has FAS. He doesn't have anything similar to ASD/ADHD. Just plain boring dyslexia. But, those physical characteristics caught my eye. He looks like me, though, and I don't have FAS. My mom didn't drink. I can't recall really drinking when I was pregnant. Maybe 1-2 drinks all together for the full 9 months?

You are not making any sense.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Yikes! After reading up on the physical description, I had to examine my DS. He doesn't have developmental delays but he has dyslexia. Some of the physical characteristics are similar to our ethnic blend - as in we're part Latino. He was wide-spaced eyes that are slightly almond shaped (as do I) and he has a slightly flatter nose than Caucasians, which also is within the range of normal for Latinos. That fold above his mouth is there but isn't super deep. His chin seems normal. He has a full upper lip.

I don't really think he has FAS. He doesn't have anything similar to ASD/ADHD. Just plain boring dyslexia. But, those physical characteristics caught my eye. He looks like me, though, and I don't have FAS. My mom didn't drink. I can't recall really drinking when I was pregnant. Maybe 1-2 drinks all together for the full 9 months?

You are not making any sense.

My son is half Latino and also looks like the FAS characteristics. It’s why they are a marker, not definitive. Much more common for some ethnicities and backgrounds.

Look, this is all way off base. This thread has footer out of hand. The diagnosis is useful when deciding whether to adopt and to spread awareness of the devastation it can cause. It’s not helpful as numerous people have pointed out as a label for purpose of school or get to services. The presentation varies so widely that it is meaningless. The actual issues, like ID, learning issues, ADHD, are all more important for those purposes and carry less stigma. In part to deter the stigma for the child which is so out of hand for this diagnosis it’s not helpful to them to go into school with this label.

[Anonymous]

Anonymous wrote:Yikes! After reading up on the physical description, I had to examine my DS. He doesn't have developmental delays but he has dyslexia. Some of the physical characteristics are similar to our ethnic blend - as in we're part Latino. He was wide-spaced eyes that are slightly almond shaped (as do I) and he has a slightly flatter nose than Caucasians, which also is within the range of normal for Latinos. That fold above his mouth is there but isn't super deep. His chin seems normal. He has a full upper lip.

I don't really think he has FAS. He doesn't have anything similar to ASD/ADHD. Just plain boring dyslexia. But, those physical characteristics caught my eye. He looks like me, though, and I don't have FAS. My mom didn't drink. I can't recall really drinking when I was pregnant. Maybe 1-2 drinks all together for the full 9 months?

1-2 drinks is not going to cause FAS. Kids get SN from bad luck, birth or other injury, genetics. No one really knows as studies are just generic guesses looking at populations. They aren't always as helpful as people make them sound to believe. You didn't do anything to harm your child. He's perfect the way he is and hopefully with the right help with the Dyslexia, he'll do great in life.

It would take multiple drinks a day to get to the level of FAS or FASD and while it impacts every kid differently more than likely light drinking or a few isn't going to do it.

I wish people would stop trying to scare each other. YOU DID NOT DO THIS TO YOUR CHILD. Don't look for something not there.