So, you are here because you have just come from a Doctor who mentioned Angelman Syndrome to you. At first, these can be words of dread, words you never expected to hear, words you don't want to hear or remember you ever heard them. Sound accurate? If so, that's perfectly normal!

You need to know what to expect, you need some direction to take, you need to know what the future will hold, you need to know how you will get through life, you need to know YOUR NOT ALONE. You need to know your feelings of Anger, grief, loss, the feeling of getting the short end of the stick, and being scared is all OK. You are not expected to hear about Angelman Syndrome and walk away with a smile on your face. There are so many new things you need to learn  and you can't learn them all at once. But I will tell you, you are in the right place. Here, if you choose, is where you will start to learn those things you need to. You need to know how to best help your child. You need to know, you are doing this right now as you are reading. The very best way you can help your child is to get educated on Angelman Syndrome, and that is exactly what you are doing.

You have probably already looked up AS and heard some pretty scary words. I think initially, anything unknown is a bit scary. The more you read  the more comfortable you will get reading these words. I can't leave them out, but hopefully by the time you are done reading this you will be able to take some action if you need to.

The first thing you need to know

Your child hasn't changed. She/he is still there and probably pretty happy. All the characteristics you have come to love - the smile, the happiness, the laugh that makes you laugh, the huge hugs that you get and you think they might strangle you, the unconditional love - it's all still there. You can go ahead and check,, I will wait. 

A disability does not define your child, you child's personality defines your child. And, that personality is still there.

More things you need to know

You may have had a family member or friend point out to you that your child's development isn't what it should be. If your at this stage of the game you need to make an appointment with your Pediatrician and get a referral to a different kind of Doctor. Your Pediatrician should know what type of Dr. to refer you to, they will probably say a Developmental Pediatrician or a Neurologist. Both are good starting points. As you read through this list you need to realize you don't need to use all these specialties. The list is just a broad range of Dr's that a child with AS could benefit from. This is only an "as needed" list.

Developmental Pediatrician sometimes has a wider understanding of development issues that can arise with children. None of my children ever saw one of these. There was just no need to since their regular Pediatrician was excellent. Other parents have chosen this option.

Neurologist:  All of my kids see a Neurologist. Having Doctors that know about AS is very important. This will cut down on any trial and error you may go through. The neurologist tracks the kids height, weight and head circumference. All three kids have Microcephaly ( A small head size), but you can't tell by looking at them, you can check out my You tube page on the first page of this site if you want check what their heads look like. He also is the one who prescribes the seizure medication. All three of my children have had seizures in the past, and they are all on Depakote. The Angelman Syndrome Foundation has a handbook that you get when you become a member. It has studies in it from various Doctors that have done research and found the best medication that may help to control seizures. This is where the trial and error that is mentioned above comes in. There is no single medication that works. The trick is finding what medication works the best. This is why having a knowledgeable Doctor is very helpful. You can also share the handbook with them.

Orthopedic Doctor : You may have been referred to an orthopedic Doctor. Children that have AS tend to be very late walkers, they may need some help. An orthopedic Doctor might prescribe a certain shoe insert called an AFO. This is a simple insert that goes in a pair of shoes. If your child gets these, you will need to buy shoes one size bigger than their regular size. They might also prescribe another type of brace. My oldest daughter had every brace there was i think. The only ones that really helped was the AFO's.

Ophthalmologist : You may have seen "strabismus" as a characteristic listed in Angelman Syndrome. This is simply a lazy or wandering eye, and one of the very first signs you may see of AS. When you look at your child in the eye, you may notice one of their eyes are off center a little bit. This is what strabismus is. You have a few options. The first one being : do nothing. With Angie and Rocky this is what we did. Or, you have the option of putting a patch over the good eye to make the other eye work more effectively.  The issue here would be your child keeping the patch on. Or, you have the option of surgery to correct the problem. This is a personal decision between you and your Dr. Amanda did have this surgery when she was 1 1/2. It didn't take like they were hoping, so they did a 2nd surgery when she was 2 years old. Between the two surgeries her eye got better, but not perfect. When she is over tired her eye still wanders.

Like I said, this page is still under construction. More to follow!