Fasd

[alizesmom]

I am researching FASD as a possible cause of Ciara's medical problems and need to hear from any "experts". Anyone???? Karen

 

[Libbyt]

Could you define FASD? I'm not familiar with the term - it's probably obvious to many, but I haven't heard it before!

 

[Eeyores Butterfly]

I posted on your thread on the CB. I'm somewhat familiar with it but by no means an expert. What are Ciara's symptoms? Do you know anything about her birth mother?

 

[Eeyores Butterfly]

Signs and symptoms of FASD can include:

-neurological impairments. Some children may have lower IQs. Organic brain abnormalities are possible, and siezure activity is associate with FAS. The child I knew did not have seizures and IQ was normal, but had very severe ADHD and some behavioral problems as well as learning disabilities. It is important to note that before being adopted this child grew up in an incredibly neglectful situation, so that certainly contributed to the behavioral disabilities.

-stunted growth/low weight for their height. The child I knew had both.

-vision problems. I believe this is not unheard of in kids with FAS, the child I knew did have vision problems.

-Some facial abnormalities. The child I knew did not have any obvious facial abnormalities, but I believe he did have some of the FAS characteristics. You certainly would not look at the child and think there was anything "different" about their face.

-High squeaky voice. I don't know if this is all children, but the child I knew had a very definitive high squeaky voice.

 

[alizesmom]

Could you define FASD? I'm not familiar with the term - it's probably obvious to many, but I haven't heard it before!

Fetal alcohol spectrum disorder.

Eeyore's Butterfly: there is definitely a history of alcohol (and drug) abuse during pregnancy with Ciara's birth mom. Ciara is small, has low-set ears, some cranial nerve damage (related to swallow), does not talk, has a cleft palate, visual and hearing deficits, had a heart defect which repaired itself, developmentally delayed (very possibly MR), chiari malformation, severe reflux, sleep and behavioral problems to name most of her problems. We were looking for a genetic error but so far everything has been "normal" so I am widening my search.

Karen

 

[Eeyores Butterfly]

FASD is definitely a possibility, if she used other drugs as well then that would explain some of the other things. The FASD child I know did have a very distinctive ears. Almost a kind of elfin appearance between the ears, the small face, and over all small stature/birth weight.

The child I knew who was a crack baby had even more severe problems. I knew the child when he was two, so I can't tell you how he is doing now. He had a cleft pallet and a jaw malformation that made chewing and swallowing difficult, so everything had to be cut up/watered down. He was nonverbal although did know sign language.

There were some cognitive impairments and autism spectrum disorder was discussed although at that point could not be definitively diagnosed. I have a hunch that wasn't it or he was high functioning on the spectrum. Probably the only symptom he had was stimming. He did have delayed motor skills and there were very significant behavioral issues. The child at times was violent. He was on a glucosamine free diet which apparently controlled his aggression but by no means did it stop it.

 

[alizesmom]

Thanks Eeyore's Butterfly, I have no idea if this will pan out but it helps to hear whatever I can. Karen

 

[MomTo4+more]

My daughter's have been diagnosed with FAS and with FAE. Thankfully they are doing wonderfully. I read up on it LOTS when my now 7 year old was diagnosed at a year old. If you can get to Chicago, there is a great center called the Child Study Center that was started by Dr. Ira Chasnoff. Dr. Chasnoff is an expert in prenatal exposure and has a superb team of professionals. They do a lengthy assessment of the child and give tons of advice. My children go about once a year for follow-up evaluations.

My 7 year old's issues were more obvious when she was very little. In addition to alcohol, she was exposed to heroin, morphine, and cocaine. She aspirated on thin liquids for the first two years, but feeding therapy worked. She had significant delays and sensory processing disorder. Sleep was dreadful. Thankfully now she is doing well. She still has a hard time with frustration and emotional regulation - but it is totally manageable. She is brilliant. Reading at a 11th grade level!

One of her best buddies is not doing so well with FAS. She is 9 and not reading at all. She has seizures and lots of behavior issues. She depends on a G-tube for feedings. She won't likely ever live independently.

There is such a range with FAS. It really takes an expert to diagnose.

I hope you get the answers you need to help your daughter. Each child can be such a mystery, and adoption adds greatly to that mystery.

 

[SueM in MN]

When I was a Public Health Nurse and also worked in schools, I followed a number of kids with either FASD or prenatal drug exposure related problems.

Theses are both things that there is not a specific test for, so there is no way to tell for sure. With conditions like that, the diagnosis is made on the basis of symptoms (things like like hyperactivity, emotional regulation difficulties, behaviors) that were mentioned by the other posters and physical findings ( the things about the body that are visible, like the low set ears, small stature, small face). For each syndrome, there is a long list of the known symptoms and findings. To make a diagnosis, the signs and symptoms the person has ate 'ticked off' against the complete list. Each dignosis has a specific number of signs and symptoms that must be present to make the diagnosis. There may be certain symptoms or findings that 'must' be present to make the diagnosis -those are usually the things that are so common to that syndrome that all known cases have them, or they are only seen in that syndrome and not in any others. Many syndromes share symptoms and, as more us known, the symptoms needed to 'fit' that diagnosis may change. That happened with autism, where the diagnosis changed and included people who were not previously included in that diagnosis.
There are also syndromes - like Down Syndrome - that were initially made only on signs and symptom, but also include genetic testing since that has been available.

 

[CatherineTCJD]

And she is "practically perfect in every way."

She went through the gamut of things in her early years, but now she is 5 (almost 6) and doing really well. One of the leading expert on FAS is Dr Persyk, he is our doctor and he is in Jacksonville, FL. Copy/Paste this link in your browser for more info on FAS: fasdcenter.samhsa.gov/fasdfaqs.cfm#6 - you'll need to add the "3 w's and a dot" to the beginning of the link.

Though it's not cureable, it can be worked with and through. I decided homeschooling is best for us as focusing seems to be an issue. She is not ADD or ADHD (etc...) she just needs to take frequent physical-activity breaks. She's doing well with her schooling - we are nearing the end of first grade. If we didn't know it was FAS, she'd have been diagnosed as ADHD, and she'd be on all sorts of medicines that may provide short-term relief but are not what she really needs. She was exposed to enough drugs already - she doesn't need more! All she needs is extra physical stimulation, which sounds easy enough - but really isn't all that simple.


I found this thread in a round about way because I was searching the net for oral-stimulation/chew-toys for her. She is constantly chewing on paper and pencils - it is driving my nuts! I think I found my answer, I hope you find yours too. Good luck