The pediatric opthalmologist diagnosed my 7 mo. old son with small optic nerves, but prescription perfect vision. B/c he was 6 weeks early and has not reached some developmental milestones and has some small red flags (like tilting his head to focus and not always quickly responding to your voice)he suggested an MRI to see if the brain is structurally normal and if the optic nerves are "plugged in" and if the pituitary gland is functioning (the optic nerves wrap near/around the gland).
Does this sound familiar to anyone? Everything I have heard/read says it is not genetic and there is no medical explanation for this rare situation - the associated problems listed are everything from blindness to severe mental retardation. We have an MRI sched for 2/8 and the Pediatric Neurology aptmt for 2/14. Curious if other Moms might be experienced with this and can shed some light on the topic for me. Very concerned and scared. Thank you to anyone who wants to throw up a prayer.
L.
I have no advice or suggestions but am sending tons of prayers! I know God will keep your family safe.
M.
L.,
I haven't heard of such a condition and I am certain you must be very worried and frightened! I will definitely say a prayer. Here is a website I found that gives quite a bit of info: http://www.ohiolionseyeresearch.com/on_hypoplasia.htm
I hope this helps!!
L.,
First of all, I did pray for you, your son and your family after I read your message. I am sorry to say that I am not familiar with his particular problem. However, my son began his struggles with other challenges at 4 months -- so I certainly sympathize with the anxiety that comes with waiting to hear what might be wrong. May I offer some general advice for you? I strongly recommend that you do as much research on his type of problem that you can prior to your pediatric neurology appointment. Those appointments can be overwhelming, and the more information you have, the more focused and intelligent your questions can be. Oftentimes, that is the only way you will get 'direct speak' from the doctor. So make a list, take it with you, and write down his/her answers. Then date it and keep it, because you may need to refer to it in the future. Do that for each appointment. Also remember that neurology, particularly pediatric neurology, is really more of an art than a science! Sometimes all the doctor can offer is a 'wait and see' approach. Understanding that, though, it is still so important that you be aggressive about finding out information and treatment options for his condition. For our son, early intervention and therapy was KEY. That - and faith that God had created him special -- not necessarily 'normal' -- and that He had a special and unique plan carved out for his life. I hope I don't sound condescending; I definitely don't intend to sound that way because your note brought back so many emotions for me! But take a deep breath because these two appointments will be the beginning of a journey - not the end of it - and you'll need your wits about you. Remember that God will equip you for all you'll need to do on behalf of your son. I will pray for you all this week -
(Encouragement for you - we were told my son might be severely retarded... and today he's been running around playing Star Wars just as normal as you please!)
Warm regards to you - S.
Dear L., I have seen other children with similar issues. Have you thought about Chiropractic? I know it sounds weird, but my son was 6 weeks preemie too. I work for a Chiropractor. My son has been seeing him since birth. I am very happy to say he is very healthy and never been sick; while most of my friends kids have all been sick several times and on medications many times. Just a side note, my son has never had a shot either. If you want more info about Chiropractic let me know... the consult is free. Hope this helps you!
Johna
L., I hope that you are finding lots of information out there so you can help you and your son. That being said remember that sometimes we over read and look too much before we know. I say this because i did it with my little ones medical issues. Just remember how wonderful and amazing your little boy is and that he is a blessing. If you are stillinterested in a conncection i would try family connections and baby net. I spoke with someone a few times from family connections and it is another parent who has a child that has a special need of some kind and can often times shed some light on things for your or just listen. I don't have either number for you but i know that if you search on google for them you will find the info. I hope all goes well for your son with the upcoming test.
M. J
