What do you ladies think? Re: repeat MRI

Mrs.Rose

Hi ladies, 

For those of you who don't remember me, my son Carson had a brain injury at birth due to oxygen deprivation.  His neurologist (who I trust and love) last saw him before his 1st birthday and said that he was essentially discharged from her care, but she wanted to do a repeat MRI at 2, for information.

She made it clear it is not necessary, but she wanted to do it.  I am suddenly torn about this.  At first, I was adamant that we do it, because I want all the information available.  He seems to have a speech delay (eval is next week) and what if something happens in the future?  The only MRI we have is the initial one, from the NICU.  I feel like we need a new baseline, but I am not sure why.

 What do you all think?   

ally81698

I'm kinda torn about doing another MRI as well - I also want to know every single detail that I can.  My DD had a stroke when she was born and had an MRI (and MRA, MRV) done immediately.  She had another one when she was 1 week old to see if the matter had spread to the other side of her brain, if it shrunk, grew, etc.  Luckily, about 1/2 of the matter was already restored within those few days.  We haven't had any since then either.  When I asked her neurologist if we should, she was against it becuase she doesn't want to have to sedate her.  She thinks we should focus on her development and not concentrate on a "picture".  Personally, I am very curious to see how much matter is still left, but I trust our neurologist 100%.  She did mention possibly getting another one when she is 2-3 years old (she is 14 months now).  Good luck with everything!

zoeyandsummersmom

My DD had a brain bleed and infarction at birth. She had an MRI after she was born and then before she was discharged from the NICU. I am very interested in having her get another MRI to make sure that everything has been reabsorbed and to also see if there is any delayed mylination.

Being that my daughter is under a year, we have already spoken with her GI to see what things he would want to do if she was put under general anethesia for the MRI. Right now if she gets an MRI she will also have endoscopy and lots of blood drawn for genetic testing, endorcrine work up and for hematology.

If you do not think you have a lot to gain from it, then I tend to agree with Auntie and to not do it or really poll your neuro on what she hopes to gain from it.

grbnik

I work in brain injury, so I don't have a child affected by it, so please know that this is just coming from the 'other' view point.  We typically refer adults to having an MRI redone if a noticeable change in functioning has occurred that we can't explain, not because of age.  But, because children are developing so rapidly at this stage, you would be having to do an MRI on a regular basis, to find out if development is 'on track'.  Unless an MRI is medically neccessary, I would hold off until LO is a little older.  There are other tests that LO's can do- such as IQ tests and neuropsychological tests (once a little older) that will give a good impression of what type of cognitive strengths and weaknesses are present, and the neuropsychologist then meets with the family to help them learn compensatory strategies.  Again, just my 2 cents of being on the outside and looking in, but I would question if this is medically neccessary, and if not, I would wait a little while longer, while this development occurs.

Heck, they say that our frontal lobes aren't fully formed and functional until 22 years of age!  Also, I have found from working in this field, that children usually have a MUCH better prognosis than adults, due to a lot of factors (which I won't go off on my soapbox about here).  I hope that this may give you a little reassurance.  

Either way, you have to make the choice of what is best for your LO and your family, with your doctor.  Just know that it isn't absolutely neccessary unless there is a medical reason for doing so.

Assembly_Reqd

Based on our experiences with MRI's, I would do it.

Nate had an MRI in the NICU and it is very blurry compared to the MRI that was done 6 months later while under sedation. It is my impression that they do not sedate NICU babies and just let them sleep during the procedure. Therefore, their could be some wiggling that could blur the images.

Our diagnosis went from missing entire portions of his corpus callosum to now having his entire corpus callosum. The portions they thought were missing were there, but too small to distinguish because he was still so small and the MRI was a bit fuzzy. So bigger brain = Bigger picture

Another reason to do an additional MRI is that you may get a better machine or even a better/different radiologist reading the films. Nate will be getting his 4th MRI in the Fall. (3rd sedated) We always get some different information as well as knowing that his brain is continuing to mature which is nice to hear.

Good Luck with your decision!

kar5162

I wouldn't at this point. DS had one at 15 mo which showed minor damage. He's doing awesome in many ways and is still really delayed in gross motor. We were told (which I've seen from others we've met along the way) you can have a lot of damage and minimal issues and minimal damage with bigger issues. Unless there's a specific change in what she's doing or how she's developing, I don't see ow another MRI will add value. And sedation sucks.

realisticdreams

I personally would do it, but that's because..it's just my personality to NEED information.  And we have dealt with general anesthesia SO much that it just becomes a normal part of our lives.  If you have anything else you can do while under then even better.  P's MRI's all look different she had a brain at 6 months and a brain at 20 months, plus 4 lumbar total.

GL on your decision.  

ToastieSimons

Our neuro recommended an additional MRI at 2 to check myelination.

He had a Grade I IVH and hematoma.  He had an MRI in the NICU (which he was sedated for) and one at 3 months.

Our neuro has said though that having one earlier than 2 was unnecessary if their development was on track.  DS's development is delayed, however he is continuously making progress.  As long as there are no signs of regression or other issues that arise, they didn't think it was necessary.  Myelination takes 2-3 years to mature so before then a diagnosis of "delayed myelination" is kind of ambiguous.

We've decided to hold off for now.  They were kid of obsessed with MRI's because we had no idea what was going on with him, but now that we have a diagnosis of a genetic mutation, I find it a lot easier to leave it be. 

Mrs.Rose

Sorry for the post and run!  

I did email our neuro, and she said normally she would forgo the MRI at 2 if the kid is doing well, but in C's case she wants to see in there, since he had such a complex brain injury.  I tend to agree.  I really, really want the information.  I know that it wont change how he develops, etc, but I think we are going to do it.   

Ugh.  I am not excited for the sedation, though.   

You guys rock, and all the different responses did make me double check myself.  

ETA: He has not had any imaging since he was in the NICU, and this is very likely the last imaging he will ever have regarding these issues.