I recently found out my 2 year old has Microcephaly and we are waiting for the test results to see if he has Fragile X Syndrome. Does anyone know of any websites or any other place to find info. to educate myself on these issues? Any suggestions or comments on these issues?
Hello! Thank you to all the responses I received. Also we received the test results for the Fragile X Syndrome. The results were normal. So we are only dealing with the Microcephaly.
I am not sure what Microcephaly is but I have just in the last week been researching Fragile X Syndrome on my 8 year old. We know that something past ADHD is going on and so far the research I have found this is the closest. www.fragilex.org is where I found ALL my info. I am a mother of an 8 year old boy and a 5 year old girl and have been married 13 years
Two reputable sites I use are mayoclinic.com and webmd.com hope this helps!
C.
C.,
Bless you and your child's heart. I know what it is like to have an unhealthy child. It will put you through tests on your strength, hope, faith, and motherhood. May God be with you. Here is couple of places that I have found for you. Just remember if he leads you to it he will lead you through it. If you need anyone to talk to email me at ____@____.com
Hugs,
L.
http://www.lpch.org/diseaseHealthInfo/HealthLibrary/neuro...
http://www.mayoclinic.com/health/autism/DS00348
I wanted to tell you I have added a local support group online for parents of special needs children. I would love for you to join!
http://health.groups.yahoo.com/group/Specialneedskidparent/
Its very new but I made it so we can ask each other questions and learn about our local resources.
I have a son that is 2 yrs old with a brain disorder called Joubert syndrome. My son has micro eyes. So I know a little about microcelphaly. I would love to talk to you more!! Good luck with everything!
I went online to see what sites came up.. and here are some i found interesting and informative. May you keep you faith strong, and God bless!
http://www.ninds.nih.gov/disorders/microcephaly/microceph...
http://www.fraxa.org/
http://www.fragilex.org/html/what.htm
Here is a yahoo support group too:
http://groups.yahoo.com/group/microcephaly/
You also might be able to find a yahoo group where you will find support of other parents with children who have this same type of syndrome. It is always good to have support from those experiencing similar situations. I would also ask your Dr. for support groups in the area if any or where he or she might recommend you to find more information. The web is great and full of information - simply type in a search and you'll have plenty of sites to look through. Will keep you in my prayers.
Blessings, C.
Dear C.
One website is http://www.healthscout.com/ency/68/369/main.html
If go to google and type Microcephaly, you will get number of sites which will give good information about the disorder.
