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Update on Brooke's Visual Maturation Delay - New Diagnosis


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  #1  
September 13th, 2007, 12:16 PM
Member
Join Date: Jul 2007
Location: California
Posts: 28
We finally had our MRI done 4 weeks ago. It has taken me a while to post this, as we were very devastated with the MRI results. Turns out that Brooke's Visual Maturation Delay, is not Visual Maturation Delay at all. Turns out she has what is called Partial Agenesis of the Corpus Callosum. The part of her brain that connects the two halves is only partially formed. They do not think the cause is hereditary, as she does not look like she has a congenital disorder (facially, ect.). This brain deformity can be caused by an maternal infection during the first 16 weeks of pregnancy (which is when the Callosum forms) or by a random deletion of genetic coding material in one of the genes that regulates the brain growth. Most people never find out the why. Our Neurologist seems to think we fall into the 2nd of the two above catagories. Just a fluke, is what he said. This condition is extremely rare, thus there are no forums on just mommies that Brooke and I fit into any longer. They think her vision problems are actually cortical visual impairment. She is making progress. She recognizes and tracks lighted objects. Only time will tell how much vision brooke will gain. Pray for her andus. This is a scary time. Brook is the strongest little girl I have ever met. Thank you for all of the education up until now. If it was not for this forum, I would have never pushed for the MRI.
Kadie
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  #2  
September 13th, 2007, 02:57 PM
Member
Join Date: Aug 2007
Posts: 25
Quote:
We finally had our MRI done 4 weeks ago. It has taken me a while to post this, as we were very devastated with the MRI results. Turns out that Brooke's Visual Maturation Delay, is not Visual Maturation Delay at all. Turns out she has what is called Partial Agenesis of the Corpus Callosum. The part of her brain that connects the two halves is only partially formed. They do not think the cause is hereditary, as she does not look like she has a congenital disorder (facially, ect.). This brain deformity can be caused by an maternal infection during the first 16 weeks of pregnancy (which is when the Callosum forms) or by a random deletion of genetic coding material in one of the genes that regulates the brain growth. Most people never find out the why. Our Neurologist seems to think we fall into the 2nd of the two above catagories. Just a fluke, is what he said. This condition is extremely rare, thus there are no forums on just mommies that Brooke and I fit into any longer. They think her vision problems are actually cortical visual impairment. She is making progress. She recognizes and tracks lighted objects. Only time will tell how much vision brooke will gain. Pray for her andus. This is a scary time. Brook is the strongest little girl I have ever met. Thank you for all of the education up until now. If it was not for this forum, I would have never pushed for the MRI.
Kadie[/b]

Kadie,
I was curious how old Brooke is and why you had to push to get an MRI. The vision specialist talked of what our MRI results were. We have not yet had one done. I have mixed feelings; however, it would help us to know what we are up against. I think your findings are a perfect example of why it should be done. I know what you mean about being a scary time. I hate the wait and see that seems to be the answer to almost everything. My thoughts are with both of you and your family. I believe prayer is a powerful tool at times like these.
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  #3  
September 13th, 2007, 06:58 PM
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Join Date: Jul 2007
Location: California
Posts: 28
Brooke is 6 months tomorrow. We got the MRI done because there was more going on - we had the Visual MAturation Delay and the developental delays. Brooke doesn't have the head control she should at this point. She is getting better, but at the time, we were not seeing much improvement. It also seemed like she had torticollis - which is a turning of the head and weak muscles on one side of the neck due to poor placement in the womb. Turns out it probably wasn't toritcollis after all and is likely a result of favoring one side over the other. She also had Reflux. I kept thinking there was something globally wrong with her that no one had put their finger on yet.
As for getting an MRI - I am glad I did. I wanted one sooner, but you do have to have the baby sedated and that's no fun. No reason to put them at risk if you don't have to.
Our case is so rare. I hope you don't get too worried by reading my post. Chances are, your baby does have visual maturation delay, and it will remedy itself.
Don't, however, stop pushing for answers just because you feel like the doctors want to pacify you. Mother's intuition is a powerful thing. I think we usually know when something more is going on!
Thank you for your thoughts and prayers and we will keep you in ours as well. Having no answers is so frightening!
I will keep an eye out for more posts in case you have more questions. This forum can be a quiet one.
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  #4  
September 14th, 2007, 07:32 AM
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Join Date: Aug 2007
Posts: 25
Thanks for the response. Brianna is really having no other "global developmental delays" other that visual delay. That is if you consider her corrected age for prematurity. Our pediatric Opthamolgist appointment is early in October. I am a little nervous about it. I noticed this group needs a moderator. I am considering it, but know so little about posting and all this message board stuff. It seems that there are a lot of views but not necessarily posted messages. Thanks for the response.
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  #5  
September 14th, 2007, 08:42 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
We're very sorry to hear the news. Things like this are so devasting. Alexis also has brain structure defects. She is missing the septum pellicidum (the webbing between the 2 hemispheres of the brain) and we think there are problems communicating between the 2 hemispheres. No one really knows what the septum pellicidum does, but they think it helps with the communication between the 2 hemispheres. I can't believe they didn't want to do an MRI. For us it was easier getting the MRI because she was first diagnosed with optic nerve hypoplasia and any child with ONH is sent for MRI to rule out/in septo-optic dysplasia (what she has) and that diagnosis is usually made with the MRI b/c the septum pellicidum is always absent in SOD. Alexis is 5 now and while she still has global developmental delays, she is making progress. Our thoughts and prayers are with you.
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  #6  
September 14th, 2007, 09:07 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Quote:
This brain deformity can be caused by an maternal infection during the first 16 weeks of pregnancy (which is when the Callosum forms) or by a random deletion of genetic coding material in one of the genes that regulates the brain growth. Most people never find out the why. Our Neurologist seems to think we fall into the 2nd of the two above catagories. Just a fluke, is what he said. This condition is extremely rare, thus there are no forums on just mommies that Brooke and I fit into any longer.
Kadie[/b]
Alexis' condition is also just a fluke. No one knows what causes SOD or ONH. It is just some sort of freak genetic thing that happens around 6 weeks of gestation that causes the optic nerves to stop developing (in ONH only) and the other brain structure and function anamolies and pituitary problems to occur. Before you even know your pregnant this happens. With Alexis, this is not hereditary so when she has children she won't have to worry about her children having it as well. Is that the case with you guys as well?
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  #7  
September 18th, 2007, 06:19 PM
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Join Date: Jul 2007
Location: California
Posts: 28
We see a geneticist on friday, but at this point the md's don't think it's a hereditary thing. Most of the hereditary causes have physical manifestations not seen in Brooke. You wouldn't even think anything is wrong with her if you didn't know her age... Thnx for your thoughts!
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  #8  
September 20th, 2007, 09:08 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Good luck, We keeping you and your family in our prayers. Keep us posted.
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