|
|
Post by cobyseven on Aug 29, 2011 12:57:00 GMT -5
I have a cousin whose child had triplets. Two are normally developing, and one is experiencing a loss of white matter. I don't know much yet, but was wondering if anyone has any idea what range of disorders can account for this.
Any information or resources are helpful. The child is somewhere about 15-18 months now (not sure exactly how old), but cannot walk, has a lazy eye issue, and has been experiencing seizures.
Resources? Threads here? (I'm sorry, but I am a loser with the search function here. Can't get it to work. Tried!)
Hope everyone is well.
|
|
|
|
Post by bros on Aug 29, 2011 13:11:44 GMT -5
I'll send you a PM.
|
|
|
|
Post by healthy11 on Aug 29, 2011 13:22:16 GMT -5
|
|
|
|
Post by cobyseven on Aug 29, 2011 14:28:16 GMT -5
Thanks! I have done a standard google search, but I think bros has given me what I need to approach my cousin. I think he is spot on, too.
|
|
|
|
Post by eoffg on Aug 30, 2011 2:04:21 GMT -5
Coby, it's actually called Demyelination, where Myelin is the white matter. Where at birth, a babies brain is virtually all grey matter, with little white matter. A crucial distinction is whether it is a progressive loss, or a single occurrence? Where an immune response to various viruses, such as West Nile Virus, can cause a loss. Though this isn't progressive, but is a temporary inflammation within various brain regions.
So the crucial distinction is whether it is a one off event, or continuing?
You wrote that the child can't walk, but more importantly, is it able to crawl?
As an Encephalitis survivor, I am very familiar with this.
|
|
|
|
Post by bros on Aug 30, 2011 10:40:13 GMT -5
I suggested that it could be periventricular leukomalacia, if it was a one time loss (most likely occurring at birth, which sounds like what happened)
|
|
|
|
Post by franklinmom on Aug 30, 2011 17:17:17 GMT -5
Cobyseven, this is a longshot, but I came across this while researching the potential connection between my son's LD and the sleep apnea he had from birth to 13 months. This study, at least, finds a correlation with loss of white matter: www.christofflab.ca/pdfs/2009/01/morrell-et-al-2003.pdf |
|
|
|
Post by bros on Aug 30, 2011 20:15:06 GMT -5
Cobyseven, this is a longshot, but I came across this while researching the potential connection between my son's LD and the sleep apnea he had from birth to 13 months. This study, at least, finds a correlation with loss of white matter: www.christofflab.ca/pdfs/2009/01/morrell-et-al-2003.pdfI, too, had sleep apnea as an infant. However, I have death of white matter around the corpus callosum, which is indicative of periventricular luekomalacia. It all depends on where the dead matter is |
|
|
|
Post by franklinmom on Aug 30, 2011 21:12:42 GMT -5
Bros, was the preventricular luekomalacia related to having sleep apnea or is that unknown?
|
|
|
|
Post by bros on Aug 30, 2011 23:07:38 GMT -5
Bros, was the preventricular luekomalacia related to having sleep apnea or is that unknown? Unknown, as I was born at 25 1/2 weeks. It wasn't detected until around 2007 during a MRI (Or at least it is the first time I have seen it in any of my medical records) and the person reviewing the MRI categorized it as very mild PVL. However, my neuropsychologist has noted that the communication between the two halves of my brain when it comes to integrative memory is incredibly inefficient. |
|
|
|
Post by franklinmom on Aug 30, 2011 23:30:52 GMT -5
Wow, Bros, you're quite a fighter! And for all that's known about how the brain works, it's it amazing how far there is to go? I'm trying to understand how my son's sleep apnea may have impacted his developing brain. Very few facts available.
|
|
|
|
Post by bros on Aug 31, 2011 1:14:07 GMT -5
Wow, Bros, you're quite a fighter! And for all that's known about how the brain works, it's it amazing how far there is to go? I'm trying to understand how my son's sleep apnea may have impacted his developing brain. Very few facts available. Ever get an MRI? Might be useful Same with a fMRI (Functional MRI, checks what areas of the brain light up when a certain activity is done) |
|
|
|
Post by cobyseven on Sept 1, 2011 13:58:24 GMT -5
Thanks so much everyone for the information. I, too, have more information now from my cousin. It seems that the infant HAS had an MRI, is receiving physical therapy, and my cousin feels that his daughter-in-law is on top of the situation. This is NOT, of course, what he transmitted in his first communication to me. In that correspondence, he said they were in a 'wait and see' mode. So, it was somewhat misleading.
The infant is wearing glasses for the lazy eye and the parents are aware that surgery is probably in their future.
I am more than willing to pass on more information, so if anyone has more suggestions, they are welcome!
|
|
|
|
Post by bros on Sept 1, 2011 15:29:39 GMT -5
If they're already doing PT and lenses to help with the lazy eye (Be warned though, the surgery for amblyopia is usually a one shot deal. Once they do it, they cannot do it again. My lazy eye is going lazy again after not being lazy for ~19 years) they pretty much just need to get the child a full evaluation head-to-toe from a multidisciplinary team at a children's hospital to establish a full and thorough history (Check things like the heart via ECG/MRI/MRA to make sure there are no irregularities there, kidneys, etc.)
|
|
