[proudmum]

our 3yr 5mnth old dd has just been diagnosed with FAE,,, can anyone give me info of where to go from here? they have said that her behaviour is at the extreme end of the fas scale and they want to medicate her with a anti-pyschotic( spelling?),,, which is worrying as they tend not to medicate kids with fas/fae in our country,,,,, i have heard something about mountain dew helping,,, does anyone know where i can find out info on this and does anyone have first hand experience with using it,,, any info would be greatly appreciated,,, obviously we are devastated even though we kind of expected it it is still a shock..
proudmum

[momraine]

The mountain dew thing is probably because it has the highest amount of caffeine of any regular soft drink. (excluding all the new energy drinks) however it also has lots of sugar. Kids who are add, adhd and sometimes kids with FAs and even aspergers tend to have the opposite reaction to caffeine and other stimulants as normal people. It calms them down. However, there are other things it does to the body so I would check with a doctor first. Also I would watch your child and see if when they have caffeine how they react.

[Barksum]

Do lots of research. Here is a web site I found helpful, but there are alot of others. FASCETS There are also a number of books out now that can be helpful. I think that website has a list of some.

Has your child been evaluated for attachment problems? Often FASD (fetal alcohol spectrum disorders) go hand-in-hand with attachment difficulties, especially in children adopted from the foster care system or those who have been traumatized or abused. Dysfunction of sensory integration is another issue to explore. There are many secondary or 'add on' diagnoses that can go with FASD, so do lots of homework. Finding a professional who is willing to address the needs of the WHOLE child, and the family, is key.

Hang in there. It is tough getting the dx, but it does give you more information on how to help your Dd.

[suburbanmomgw]

Our son got the FAS dx when he was about 4ys. We have not medicated him. I agree that reading lots is important! The best thing to do is take one behavior at a time to try to "handle". I find that routines are key. Picture stories helped alot when he was younger. I don't remember all the books and web cites I have read and continue to read, but I am glad to talk more if you want!

[proudmum]

thankyou all for replying,,, they are assessing her for sensory issues which we know she has,,, she used to nearly vomit everytime she touched playdoh etc... we adopted her from birth but the psych did mention that she may have a bit of oppositional defiance etc,,,
We do not want to medicate her at all if we can help it ,,, they said that the meds could damage her liver and thats not a risk we are willing to take at this stage,,,, we hope that with diet modification and anything else we can find to do will help with her aggression ( mind you we have always kept her away from preservatives and colourings as we noticed she was very sensitive to them)..
They told us that time-out will not work for her so i guess we are wondering what do you use instead?
It has been a bit of relief that we have this diag now as the last year we have been sooooo confused by her behaviours and upset by them,,, now we know what is going on we are much more relaxed and just focused on doing anything we can to help her..
proudmum

[Barksum]

I feel like a broken record, because I recommend this book to everyone , but I've found one book very helpful for 1) understanding FASD and 2) how to work with the various issues that a child with FASD can have. It is called Trying Differently Rather Than Harder, by Diane Malbin. It is available at the FASCETS web site.

It's great that you are aware of the problems that can stem from artificial ingredients! I've also read in several places the kids with fetal alcohol can have digestive problems. Some kids with FASD have problems with dairy (casein) and/or gluten. There is a gluten free/casein free recipe exchange that I've found that was encouraging. It is specifically for moms of kids with casein and gluten issues. Uh...will have to look up that web addy! LOL GFCFrecipes@yahoogroups.com

Another thing that we've found to be helpful is fish oil supplements. They make some good flavored oils or chewable capsules. Fish oil is 'brain food' and since these kids are using extraordinary amounts of their brains (due to disorganized processing more of the brain has to work instead of a localized part of the brain) their little brains need more support.

Not only does fish oil help, but being aware that the brain consumes more glucose than any other organ in the body is a good thing to remember, too. If your kids have major meltdowns after doing something that is strenuous for their brain they may have low blood sugar. Giving a snack can raise the blood sugar and help level out the nastiness.

For us this means that we have to have snacks while doing school. I can usually tell when we're reaching boiling point since the child will begin to not be able to do something that he was just doing 30 seconds before. He becomes easily overwhelmed and then usually has a crying session. If I'm thinking and give him a little snack and a few minutes to get it together we can avoid the meltdowns.

We try to have 3 snacks during the day, and 3 meals. The snacks can be as simple as peanut butter and whole grain crackers, apple slices and cheese, a small glass of milk, etc. (And if you go casein/gluten free, then use a casein free cheese substitute and soy, almond, or rice milk. )