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  #1  
December 13th, 2006, 09:06 AM
Regular
Join Date: Jun 2006
Posts: 93
Sonora just had an MRI on Thursday and and ERG, which tests the information from her eye to her brain (that was normal) however her MRI now came back abnormal. It seems that the white matter of her brain has not grown since her last MRI 6/7 months ago. What that means I have no idea. We meet with the neuologist on Friday and he can tell us more.

It could be a metobolic disorder but I do not know. If it is a metobolic disorder it seems that could be genetic. It is weird because there is nothing in either of our families that would lead us to think something could be wrong.

If anyone has information or experiences that would be great. From my understanding the white matter grows into teenage years.

Kalynn
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  #2  
December 14th, 2006, 08:51 AM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
Sonora just had an MRI on Thursday and and ERG, which tests the information from her eye to her brain (that was normal) however her MRI now came back abnormal. It seems that the white matter of her brain has not grown since her last MRI 6/7 months ago. What that means I have no idea. We meet with the neuologist on Friday and he can tell us more.

It could be a metobolic disorder but I do not know. If it is a metobolic disorder it seems that could be genetic. It is weird because there is nothing in either of our families that would lead us to think something could be wrong.

If anyone has information or experiences that would be great. From my understanding the white matter grows into teenage years.

Kalynn[/b]
I am so sorry you are going through this. I know how hard it is. Sydney just had her second MRI 2 weeks ago. Both have been abnormal, and she is being treated for a possible metabolic problem called MMA (Methylmalonic Acidemia). No one in either sides of our families has problems like this either, but if this is what it is, it is genetic and we are both carriers. She had a biposy which we should have the results of in a few months which will hopefully tell us if it is MMA or not. The biopsy has to be sent to a lab in Canada.

Feel free to ask me anything you want. If you want to PM me, also feel free. I am here if you need/want it.

HUGS!
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  #3  
December 16th, 2006, 05:00 PM
trisha4005's Avatar Veteran
Join Date: Oct 2006
Posts: 116
Quote:
Sonora just had an MRI on Thursday and and ERG, which tests the information from her eye to her brain (that was normal) however her MRI now came back abnormal. It seems that the white matter of her brain has not grown since her last MRI 6/7 months ago. What that means I have no idea. We meet with the neuologist on Friday and he can tell us more.

It could be a metobolic disorder but I do not know. If it is a metobolic disorder it seems that could be genetic. It is weird because there is nothing in either of our families that would lead us to think something could be wrong.

If anyone has information or experiences that would be great. From my understanding the white matter grows into teenage years.

Kalynn[/b]
Hi, I'm Trish and my daughter Amaris is a special child. I'm sorry to read about your daughter's MRI being abnormal. Amaris had one when she was two to try and decide what disorder she has and her doctor was looking for white matter problems as well. It's call demyelinization or leukodystrophies. It means that the myelin sheathes on the brain aren't the correct size or are diminished.
A lot of conditions can cause this.
With my daughter, no one in our entire family, even back to great-great- grandparents have any history of her disorder, which is Cockayne Syndrome. It's so rare, that a family never see's it happen twice in its history. But my husband and I are both recessive carriers and when Amaris was conceived it became dominant and she has the syndrome. All of our children would have a 25% chance of having the syndrome if we were to have more. What made it even more surprising is that my husband and I not only have NO chance of being related we're from completely different cultures.
Because this syndrome causes early death, we've decided to not have more.
And it's very hard to swallow that I am carrying around a gene that is going to cause my daughter to die. I still have a hard time with it.

I know how tough this all is. I'm so sorry that you're going through it. Trish
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  #4  
December 19th, 2006, 06:42 PM
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Join Date: Jun 2006
Posts: 93
Thank you for both of you responding.

Does your daughter have a form of Leukodystrohpy? Which type is she diagnosed with?

Right now we are going through the blood tests to see if she does have it what type is it we are hoping it is one of the ones that can be treated with Stem cells becasue she is not regressing yet. Have you explored that option? I am sure that you have. I live in MN where the leading research hospital is for leukodystrohy. Of course I have already talked to the people at the U of M in transfusions asked questions and just put a bug in thier ear about what is going on and her name, one thing I can be is persistant. The intake coordinator said he would speak with the doctors that are there which apparently are the leaders in this field. He said we could probally get the transplant in a matter of weeks if she is diagnosed with it.

On the report I received it said Krabbe's, which is a form where most children do not live past the age of 2. From my understanding stem cell transplants can actually fix the problem if it is caught in time. My concern is that it is not in time. HOw ever she is moving forward slowly.

As far as having more children my husband and I feel the same way although did you ever explore the possiblity of invitro? They could harvest your eggs and sperm, take a culture of the cell and see if that baby would have it. I don't even know if that is possible however if it is I think that is what we would do.

I do feel guilty that I wanted a baby and then I brought a baby into this world with this problem, however I think ever mother feels that way. Just remeber it really is not your fault, even though it totally SUCKS! Ha, that is my insight of the day....

both of you please keep in touch.
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  #5  
December 23rd, 2006, 07:16 AM
trisha4005's Avatar Veteran
Join Date: Oct 2006
Posts: 116
Quote:
Thank you for both of you responding.

Does your daughter have a form of Leukodystrohpy? Which type is she diagnosed with?

Right now we are going through the blood tests to see if she does have it what type is it we are hoping it is one of the ones that can be treated with Stem cells becasue she is not regressing yet. Have you explored that option? I am sure that you have. I live in MN where the leading research hospital is for leukodystrohy. Of course I have already talked to the people at the U of M in transfusions asked questions and just put a bug in thier ear about what is going on and her name, one thing I can be is persistant. The intake coordinator said he would speak with the doctors that are there which apparently are the leaders in this field. He said we could probally get the transplant in a matter of weeks if she is diagnosed with it.

On the report I received it said Krabbe's, which is a form where most children do not live past the age of 2. From my understanding stem cell transplants can actually fix the problem if it is caught in time. My concern is that it is not in time. HOw ever she is moving forward slowly.

As far as having more children my husband and I feel the same way although did you ever explore the possiblity of invitro? They could harvest your eggs and sperm, take a culture of the cell and see if that baby would have it. I don't even know if that is possible however if it is I think that is what we would do.

I do feel guilty that I wanted a baby and then I brought a baby into this world with this problem, however I think ever mother feels that way. Just remeber it really is not your fault, even though it totally SUCKS! Ha, that is my insight of the day....

both of you please keep in touch.[/b]
Hi, Sorry I've been so long in responding. I'll have to look up Krabbe's disease, as I haven't heard of it.
With my daughter Amaris, her MRI at two was normal. She has microcephaly, so her head is small, which is all the MRI showed. Dr said everything else looked great, no problems anywhere. None of the white matter problems associated with Cockayne Syndrome were present yet. I've learned from other families with the syndrome that it sometimes just shows up later.
I thought about invitro and if the option were there, I would definitely do it. It's only available with CVS or amnio at this point.

Keep pushing for your daughter. It's most important fight you'll ever have.

Happy Holidays!
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