How many havent gone to get genetic testing?

[romybeth]

Hey everyone!

As I read thru peoples stories and look at my 2 boys, Henry (our first child, born without visual impairments of any kind), and Linus, our 2nd (born 17 months later WITH micropthalmia of the right eye), I was wondering who hasnt gone to get their kids and/ or yourselves tested for genetic abnormalities assocated with these visual impairments.

Is it something we should have done? Linus is developing fine, walking, starting to talk etc. But I didnt know if this is something we should have done.

Also, is it something we should do should we decide to have more kids?

Just wondering,
Romy

[ohbilatmicromom]

We did have Jalen tested by a geneticist and all was normal. He is involved with the ICAN testing as well, but I guess it takes awhile to get the results back. My husband and I have not been tested as its my understanding there is not exact test for micro/ano.

Hope this helps. Our son's bilat micro/cataracts/now glaucoma is also an isolated case on both sides of our families. Can't trace any case on either side? So who know's why it occurred.

Hope that helps.
Michelle

[Conni]

My daughter Shannon is 11 and has microopthalmia of the left eye. She also has a partial coloboma of the right eye, but has near perfect vision in that eye.

We did not do genetic testing. She has had a host of other "problems", such as a hole in her heart (ASD) which thankfully completely closed by age 4, allergies and allergy-induced asthma, ADHD, high anxiety, speech delays (she didn't talk much until age 3, and still has a hard time "putting it in a sentence" as she says. She does get very good grades in school, all A's and B's.

I'm not sure what genetic testing would do for us. No one in either of our families has ever had this defect or one even similar to it. The doctors initially suggested that this is randomly genetic. I am diabetic, but my HbA1c was only 5.2 during the first trimester, which represents excellent control. I had a very normal, uncomplicated pregnancy.

Are there any other diabetic moms of microopthalmic children out there? Just wondering, as one opthalmologist suggested a few years ago that this defect "probably" is a result of my diabetes, despite my great control over my blood sugars. This, of course, bothers me because it makes me feel responsible. But if there is a link between microopthalmia and diabetes, I would be interested in checking this out.

Thanks

[VicciR]

I have not had the genetic testing done on myself or my son. So far his vision is perfect. he is only 7 months. From my understanding they don't know what causes micro. so why waste time & money?! I have microphthalmia (right eye) I am almost 30 years old. Please do not be afraid to have more children! It might not happen to all of your children. My husband & I are planning on trying again this August & I'm sure that baby will have both eyes & great vision too! That was my husbands biggest worry if our babies would have their eyes. I knew Seth would & I'm sure all our children will. Your next baby could have perfect eyes & vision, but you'll never know unless have more.
Good Luck Romybeth!
VicciR

[Conni]

Hello again -

I cannot remember I responded to this one, but I wanted you to know that we have three children, ages 13, 11 and 9. Our 11 year old, Shannon, has micro in her left eye. Her two brothers, Josh & Sam, have no vision problems whatsoever.

Incidentally, Shannon is 18 months younger than Josh. (I see that your children are quite close together in age, also, so I know how busy you are right now!!! Getting groceries is fun, isn't it?!)

I would encourage you to have more children, if your heart is set on this. I don't know if you're a Christian, but if you are, praying about it may help you to come to a decision.

Blessings to you,

Conni VB

[saraault]

We havn't had testing done on our 3yr. old. I guess I don't see the point at this time as we are not having other kids and it will be years before she has to consider having children. At that time I would encourage her to get tested. I know there are "syndromes" that they can identify with genitic testing that help improve treatments but as my daughter is progressing normally we haven't felt the need. I know ICAN encourages testing especially if there are other things wrong besides the eye problems.

Just my thoughts!
sara in Michigan