jump to article
TYPE SIZE  Smaller Type Larger Type CHANGE COLORS SUPPORT US en español  
Connect with other parents like you. Sign up now Login

My 16 week old has ONH

Posted by Watson03 on 9/7/2009 12:21:19 AM.

I was just told 5 days ago my sweet baby boy has Bilateral optic nerve hypoplasia. Having to put my shock and grief aside I quickly got him in for the suggested MRI. We have recieved the preliminary results stating the he does have part of his midline in the brain underdeveloped. His pituitary appears to be normal. I am in a daze and am still processing with my friends and family. I am falling apart but try to be there for my baby and my husband. I just thought I would see if there is anyone with advice or who can relate to my story. How do you carry on with life. Do you continue with work and things as if they are normal or do I quit work to be with my child. So many questions, so little answers.

There are currently 3 replies.

      

  • 1 . Re: My 16 week old has ONH
    Posted by Judith Lesner on 09/07/2009

    Hi,
    I am so glad that you found our site and want you to know that there are many folks here who have been through similar situations. You must remember that you are not alone and that there are people here who have experienced similar things with their children and want to help you through your difficult time as others have helped them through theirs.

    First of all, the shock, grief and confusion you are going through is quite typical for parents when their children have just been diagnosed. It is all quite natural.

    Secondly, dispite your emotional state and natural shock, you have taken the right first steps to help your child. You acted immediately and had the MRI done. That's great because it gives you more complete info on what you are dealing with. Then you found us and we can give you support during this difficult time.

    None of us can advise you about giving up your job or not. What I can say is that experts advise not making any quick decisions right after a radical change in your life.

    With time, you will be able to make some considered decisions about what changes you might want to make. It is important to remember that your sweet 16 month old baby is still the same sweet baby.

    What i do know is that with information and experience, dealing with your child's condition will get easier. Not "easy" but definitely easier. I speak as the mother of a now 26 year old son.

    Please let us know how else we can help you.

    Judith



  • 2 . Re: My 16 week old has ONH
    Posted by mommyof3 on 09/07/2009

    Hi,
    I have a son with SOD/ONH. PLEASE read my reply to the post before yours (about the nephew), especially about the Endo. Please email me if you'd like; I have lots of info.
    Stephanie



  • 3 . Re: My 16 week old has ONH
    Posted by mommy_erin on 10/10/2009

    I was in your shoes 3 years ago. I am so glad you have found resources so quickly. I did not know much for the first 2 years just what the doctors told me and what I read on the internet which is not too reliable. I will tell you that this is a very complicated diagnosis and you will most likely meet someone with the same exact issues as your child. We all have some things in common though.

    One thing that most of our children respond to is music. My son is very delayed but has had perfect rhythm since he was a few months old. It's amazing. There is a guy in Los Angeles who has a music studio that almost exclusively works with musical savants diagnosed with ONH. One that has gotten some press is Rex Lewis Clack. His mother has written a book which I have not read but it may be an uplifting story for you.

    I personally did not quit work right away but my husband was unemployed at that time. We kind of juggled work for the first year to avoid putting him in daycare. When he was a year old we put him in a home daycare which worked out well. He was only there about 10 months though because I had a second child and we couldn't afford the daycare costs. I currently stay home with both children. Like Judith said there is no way to know what will work for you but it is not good to make a huge decision like that right away. Most of our reasoning for our choices was financially based and not motivated by his issues.

    I am glad you have had the MRI already. I hope that you will be referred to a pediatric Endocrinologist (which is what I'm sure Stephanie was referring to in the other post). My son's pituitary gland looks completely normal on the MRI but he now has 3 medicated hormonal deficiencies so it is imperative that you have the baby seen by the endocrinologist on a regular basis. You will also be referred to an Opthalmologist and a Neurologist if you haven't been yet. I would also suggest having an EEG done.

    I know that everything is so overwhelming right now but it sounds like you have a supportive family which will be key! Once my family got over the shock they all became very supportive. If you need someone to talk to, I would be happy to. My email is: epereyra@live.com and I check it a few times a day.

    I have so many suggestions for you but I don't want to overwhelm you any more ;)


Post a new response | Track this topic by e-mail | Return to top of the comments