[RUSS-A-MOM]

We recently took my son who is almost four and adopted at 12 months to our local adoption clinic. They took photos of his head (he does have microcephaly) and face and plugged them into new software developed by the University of Washington for detecting fetal alcohol syndrome (FAS).

Based on the results, the software indicated the presence of facial features moderately consistent with fetal alcohol syndrome and assigned us a four-digit FAS code that the Dr. indicated was in the higher range to indicate FAS.

They also said there was evidence of significant Central Nervous System damage/dysfunction -- solely based on the size of his head.

Just wondered from those out there that have had their children evaluated for FAS -- have they used a software system such as this and how accurate is it? The clinic where we took him performed absolutely no cognitive tests on him at all!!

Just wondered what to make of all this?? Our son is very active and does have attention/focus problems in preschool which have been improved by implementing OT techniques. He also is behind socially. I'm not saying a diagnosis of FAS would be a shock to us, just wondering if it can be done solely on physical characteristics, does cognitive and behavioral attributes come into play?

Also, for those that have children with FAS -- what signs do you use to indicate FAS at the age of four? I guess I need to know what to watch for and monitor his progress.

[amyfk]

Hi Russ-A-Mom,

I am not understanding the question. Sorry it is late here.
Are you talking about a program for a referral or for a child in person to test for the physical characteristics of FAS?
When we were reviewing referrals before our adoption our IA doctor had this software which ran the pictures of the referred children through a computer which would then show what likelihood various referred kids would be to have FAS. They looked at the philtrum, etc.
However, we have not had an inperson test of our child to detect FAS. So I dont know about this kind of technology.
I am guessing you are talking about the latter procedure, which we didnt do.
I hope someone can give you insight on what you need.
Best of luck toyou,
Amy K, NJ

[Provost21]

We had our son go through an evaluation at the U of MN at the internation adoption clinic. They didnt have the computer software but they did do facial measurements and things like that. They also did do a lot of cognitive testing. I think your clinic maybe did more of the measurements since it sounds like they have new software that can detect it. It is my thoughts that facial features are a big indicator that they look for and this new software maybe is the best route to detect FAS/FAE.
You could also call another behavior specialist to have him evaulated as well for another opinion or ask the doctor where you brought him to explain a little more in depth about the testing procedures and diagnoses. It always seems like once you get home you always have more questions for the doctors. I am sure they would be willing to sit down and discuss things with you.
Best of luck to you and your family.

[kizibits]

My daughter was recently diagnosed as FAS (no surprise for me, either) by a geneticist who did evaluate her facial features, head size, etc., but did not run photos through a computer. She actually put her hands on my daughter's head and physically, as well as visually, analyzed her shape, size, features, etc. She also considered behavioral and cognitive issues, MRI results and other medical diagnoses that are frequently associated with FAS. My daughter has Pierre Robin Sequence (a small jaw, narrow throat opening, and cleft palette), sensory integration disorder, significant neurological deficits, brain damage due to strokes/lack of oxygen during delivery, global developmental delays, repetitive behaviors, and more. All that said, she also has an IQ of greater than 100 (most FAS kids are between 60-65,) strong verbal and social skills, and a generally cheerful disposition (none of the evil, dangerous to herself and others behaviors typically associated with FAS.) Unless there is actual documentation of the birth mother drinking, the diagnosis can only be probable at best, so I would certainly want a diagnosis based on more than just photo analysis IF the intention is to use that diagnosis to gain services that you would not otherwise be able to get. Otherwise, as our pediatrician and many specialists often remind me, a diagnosis is really just a place to begin formulating a plan for dealing with the situation at hand and you can do that without the diagnosis, as well in most cases.

[SingleMama2B]

Hi.... I am writting a PM to you this morning! My daughter was FAE (exposed).

[GCS]

Dr Ira Chasnoff in Chicago at Children's Research Triangle is an expert in FASD. There is a link on this site to set up an appointment for an evaluation if you are interested. They are wonderful, have parent support groups and give good info for parents who need help with their school system for getting services.

[RUSS-A-MOM]

Thank you for your advice and input. I really appreciate it. I had a talk with his OT today that helped to sort things out.

Single Mama...I did not yet receive your PM. I'll look for it again later.