is an MRI necessary??

[emconnell]

i have a 6 week old daughter who suffered a lack of oxygen at birth & had several seizures--spending 12 days in the NICU.  while she was in the hospital she had an MRI that showed "diffused brain damage" and we were told she could have anything between coordination problems to cerebral palsy and that it was a wait & see kinda thing. they sent her home with a prescription to phenabarbotol even though her last EEG in the hospital was clear of seizures. 

she has been doing GREAT ever since.  she is breastfeeding & showing normal development skills.  i have taken her to cranial sacral therapy and to a feldenkrais therapist.  she has also seen a physical therapist.  all three seemed really happy with her tone, alertness, motor functions, etc. 

however, monday she is scheduled to get a follow-up MRI.  i tried to call her neurologist to ask if it was really necessary, but her neurologist is out of the country & i do not have an appointment with her until mid october.  i feel like i shouldn't put her through the 5 hours of not being able to eat & the risks of sedation.  it just seems cruel to me.  especially if all they are going to find out is that--yes, she still shows signs of brain damage--or even--wow, she has miraclulously recovered.  does an MRI offer a change in her treatment?  i would like to wean her off of the phenobarbotol, but does an MRI have anything to do with this?

i'm waiting for a call back from the neurologist's office, but the MRI is scheduled for monday & i need to figure out what i'm going to do.  i'm thinking i will just postpone.

can anyone offer any advice?

[askew]

I say no, there is little point. My DD had a stroke during birth. She had a MRI in the NICU and her neuro said there was no point to getting another, is it won't change anything. It will still be wait and see. We also did feldenkrais and cranial sacral therapy, she started at 21 days. My DD did not have seizures in the NICU, she had apnea. However, she did develop Infantile Spasms at 6 month old, and we were told it was directly because of her injury. Even now, at 2, she has never had a follow up MRI. No reason to! We already know the damage is there, now it is all about how her body rewires around it. 

[SpottedFoxx]

I think this is a question better asked of the doctor - not a message board.  If they are asking for one, there may be a perfectly valid reason.  I'd ask the doc why he wants it and go from there.  Maybe they want to check to make sure no additional damage occurred between then and now.  Maybe they want to see if any healing has taken place (babies brains are incredibly plastic).  Maybe they want to milk the insurance company.  Only way to know is to ask and then make your decision.

I'm very happy to hear your daughter is doing well.   What a scary way to come into the world.  Wishing you all the best and continued healing.

[melissa17s]

Contact your ped about it.  Let them know the neurologist is unavailable and that you have concerns.  I would guess that they will keep your dd on an aed until she is either seizure free for a period of time or they see measurable improvement. I think they would expect a seizure free eeg while she is on an aed. An MRI is not bad for the body like the c-scan or pet scan. I would do in it the hopes that it would lead to better long term treatment.  

[Emmeline II]

Originally Posted by emconnell 
i'm waiting for a call back from the neurologist's office, but the MRI is scheduled for monday & i need to figure out what i'm going to do.  i'm thinking i will just postpone.

can anyone offer any advice?

I would probably reschedule it further out so you can get you questions answered, then cancel it later if necessary.

[AbbieB]

Congratulations on the birth of your daughter!

I think you are asking very good questions and I would want answers before going through with another scan. With all medical testing, I think it's wise to ask what is the purpose of this test, what do we hope to learn, what can we do with the information.

It seems to me that it's not so much the scan, it's the sedation, stress and lack of food for a newborn that are a big concern here. I would have the same concern.

I'm so glad to hear your babe is doing so well.

[heatherdeg]

Originally Posted by Emmeline II 

I would probably reschedule it further out so you can get you questions answered, then cancel it later if necessary.

   That being said, they'd need to have a seriously compelling reason to have to do it (if it were my kid).

And FWIW, I think there is tremendous value in knowing/hearing the experiences of parents who have BTDT (like askew).  I don't find that the doctors always have sound reasons for doing things vs. "this is just how it's done" with no thought to it really.  I hope more parents that have been through this are able to post here and give you more to go on when you speak with the doctors.

[melissa17s]

Originally Posted by heatherdeg 

And FWIW, I think there is tremendous value in knowing/hearing the experiences of parents who have BTDT (like askew).  I don't find that the doctors always have sound reasons for doing things vs. "this is just how it's done" with no thought to it really.  I hope more parents that have been through this are able to post here and give you more to go on when you speak with the doctors.

When my ds had his mri, he was 9, so although he was sedated, I am sure his experience will vary compared to an infant.  The reason they sedate is because they need them to lay still for about 20 minutes, which my "adhd"/frequently seizing kiddo could not do it. The MRI was a success, but he had a poor reaction to either the anesthesia or the dyes.  He spent many hours vomiting, dizzy and disoriented. We missed our follow-up appointments.  It was a tough day, but by the next day he was back to normal.  

In terms of the seizures, MRIs are done to see if there is cause for seizures and if there is damage to the area or scar tissue that could be causing the seizure. They also look for other abnormalities like tumors, blood vessels, etc. It is a better image than ct scan and does not have the risk of radiation.  Having the MRI woud help your dr. set a course of treatment, such as whether or not to keep giving your dd aeds- but it is not the only way they evaluate. 

[KCMichigan]

Congrats on your little one!!!

My DDs were preemie. They both had MRIs, one has had two.

The reason we did them is because :

1. babies brains are adaptable. In our case (as it may or may not be in others) they were watching ventricle size and fluid.  Both could vary and are easier to treat if known BEFORE you see physical symptoms.

2. Both DDs had delayed motor skills and other mild delays.

That said-- the MRI s were much less invasive/ risk vs knowledge than other procedures we have done (swallow barium study, scopes, biopsies, etc). We were determining if one DD would need a shunt (she did not) since the first MRi showed extra fluid pockets and the other DD to make sure that the ventricles had indeed shrank as expected(they did) or enlarged. It was reassuring to see to know and to not worry about looking for symptoms that may indicate problems. It was piece of mind as well as proactive for our particular situation (to alleviate the need for further testing or medical treatment before baby was symptomatic of problems).

The oral sedation the first time was no biggie. When DDs were older one DD took a long time to recover-- but she has the same reaction to general anesthesia.

I , too, would postpone it. Get your questions answered and then take it from there. They may be a legitimate reason to repeat the MRI, it may be medical curiosity, it may be needed to justify therapies, etc. But you should have a reason that is specific to your situation and baby. Not a blanket- we like to do repeat MRIs. It may be best to not repeat it.

[SpottedFoxx]

At that age, I don't know that sedation is really necessary.  My son had a follow up MRI to his seizures and they put him into a papoose and he immediately fell asleep :) 

[emconnell]

thank you for all your replies!  i have postponed it until next week.  i'm still waiting to hear from the neurologist.  her PA said she thinks the MRI is to check for further damage that may have happened since the first MRI, but i would really like to talk to the neurologist & hear a more detailed, concrete reason before committing to this test.