WWYD? Put your baby through an MRI or not?

[Wildf1ower]

My DD has unequal pupil size. This has been a worry of mine since I first noticed it when she was about 5 weeks old. She turned 6 months today. She has seen her ped a couple times about it, she's been to a pediatric ophthalmologist for testing and measurements, and she has seen a neurologist. All have basically told me they don't think it is Horner's Syndrome (which would indicate an MRI should be done) but her one test could be interpreted by some doctors as equivocal (it was a cocaine drop test) but her doctor considered it 'negative'. Anyway, we just saw him again the other day and he still think she looks fine, "just" unequal pupils, which he claims occur in 4% of the population even to the degree hers are (which I'm not sure that's true) and considers it 'physiologic anisocoria' but said if I'm very worried, we could just do an MRI. But I don't want to put her through that if it's not necessary, but sometimes when I look at her eyes and think what if months down the road we find out she does have something going on (neuroblastoma is the fear in my mind) and here, all these months, I saw this glaring sign every time I looked at her and didn't do the stupid MRI. But then again, what if she has complications from the sedation?

I'm so torn. Part of me thinks/hopes that since it's almost 5 months since I first noticed it and she still seems healthy, that hopefully nothing is going on.

I saw a study that had over 600 test subjects in it (babies) and there were no major adverse events from sedation for MRI. Now, if we took 600 babies who had the degree of anisocoria my DD has, I'm guessing there would be more bad stuff going on than 0 in 600, you know?

I just don't know what to do! Should I just do an MRI? Here are two pictures from tonight - first is without flash and second is a 'red eye' flash picture.

http://img.photobucket.com/albums/v7...y/DSCF3724.jpg

http://img.photobucket.com/albums/v7...y/DSCF3725.jpg

*****************************

I wanted to update - We did both the urine tests (catecholamine levels), which were normal, and last Friday we did MRI. The MRI was of her head, neck and eyes and they didn't find anything wrong. The only other thing to check is a chest x-ray, which her doctor doesn't think she needs and is telling me to 'relax'. I am very relieved, because her head size has gone from 10th percentile for her gestational age at birth to about 90th percentile, and that combined with a somewhat assymetrical head size (the back left side of her head kind of bulges out more than the right) and the fact that the eye with the small pupil seems to look bigger than the other often in pictures especially, I was worried. So at least I know there is nothing going on in her head!!! :)

[babymakes4]

Well I am unable to see your pics....However if I were in your situation, I would absolutely do the MRI. I would rather be safe than sorry. To my understanding the anestesia has a low risk of complication, and it's important to be informed about your daughters condition so that if there is anything that can be done or needs to be done it can be taken care of as early as possible.

I would hate myself forever if I let it go and then found out something was really wrong.

[JudyJudyJudy]

If you have the MRI done, what happens after that?

When Jacob was 15 months old, he was supposed to have some sort of moving chest x-ray (I can't remember the name of it right now). I backed out, and, fortunately, I've never regretted it.

[Sputterduck]

Honestly, I would make the decision after knowing the practices of the place that will do the MRI. My son had a cat scan at 10 months and it was a Fight to get them to treat him well enough to not be traumatized by the whole situation. It's not that hard to be nice to a baby.

If their practices are child friendly, I would go with the MRI. If your daughter is going to have a trust-breaking experience, I would not. 6 months is very young.

[Suzzzz]

I would do the MRI. My son has a medical condition that I've known about since his birth. It bothered me since he was a week old and no one would listen to me let alone do any tests. I lived with that worry for nearly 3 years until finally I insisted he had an mri done. He was sedated the first couple of times but was a bit older.

It may save you years of worry to have MRI done.

[Earthmama]

I hope that you find peace (and good news) with whatever decision you make.

[Wildf1ower]

http://img.photobucket.com/albums/v79/wijody/DSCF3724.jpg

http://img.photobucket.com/albums/v79/wijody/DSCF3725.jpg

Second is with the 'red eye' from the flash.

The hospital is pretty good, I think, so I'm not worried about her treatment, just the rare unforeseen complications to sedation. I've worried about this since I noticed it. I leave doctors feeling somewhat reassured, but then the worry returns when I start to doubt their opinion. I have posted about this on several sites and have come across a handful of other parents who say they went through the same things, and most didn't do an MRI, just went on their merry way with the word that it was "just" unequal pupils, so that makes me fear I'm being too aggressive/paranoid putting her through an MRI.

[Sputterduck]

Wow that is a big different. I'd go for the MRI.

[Sputterduck]

She's adorable, by the way.

[babymakes4]

very big difference. Please have the MRI. I hope it turns out to be nothing.

[Suzzzz]

I would if she were my baby.

[JudyJudyJudy]

Jody, what will the MRI determine? What can be done based on the results?

[Bellaelle]

My dad is a radiologist and routinely does MRI's on babies/kids. If it is any comfort, there has never been a bad outcome. His staff and he go to big lengths to make sure the children are comfortable.

Be sure she is seen by a pediatric radiologist.

Good luck and she is a doll.

[hidesome]

An MRI is completely benign in terms of side effects. The only issue is the noise (they are loud) which might scare your baby. If the baby is sedated to alleviate that, I can see no real issue with it given your doctor's recommendation. I might feel differently about a CAT scan or other x-ray techniques like PET.

[Wildf1ower]

Judy, the MRI is to look for causes - the unequal pupils are not a problem in themselves but if she has Horner's syndrome (usually the eye with small pupil is a bit droopy, which her's isn't) then there could be something causing that - one thing that's been my big fear is neuroblastoma. I've read about that and did get a spot urine test to check for some tumor markers, which were negative, but I understand that the 24-hour collection is more accurate than just a single urine, which is all we did. There are other things that can cause Horner's, too. So that is what they'd be looking for. Hopefully they'd find nothing - even in full blown Horner's they often don't find a cause.

I've been careful all along because I'm afraid of the sedation. I went though it all with my son, too, but in his case we had to do it - in her case I have doctors telling me she's probably fine and the 'risks of sedation' are probably not worth the small chance she has something going on, but then I LOOK at her and I doubt their word that "4% of the population has this" because from what I have read, that is true but it's under 1 mm difference, and hers is a good 2 mm difference or more.

[Suzzzz]

Go with your gut.

[Hennyetta]

if she were mine, I would do the MRI. what a cutie!

[JudyJudyJudy]

Jody, of course, you have to make the decision. However, if *I* were in your shoes, I'd do the 24-hour urine collection but not do the MRI. I suspect that your doctors are right about the risks of sedation being greater than the benefits of the MRI.

[MrsGinCamarillo]

Judy,

Until her DD is potty trained doing a 24 hour collection is almost impossible (unless you have a catheter).


Wildflower,

I've been through many MRI's with Alexander (he has a rare brain condition). Honestly I would go with the MRI. They won't totally put your DD under, so the risks of side effects are very slim (I would think almost none). Any effects of the medications will wear off by the end of the day.

I'm sorry you are dealing with this.

[still_me]

I would do the MRI. Side effects are slim and, from personal experience, it was harder on me than him.

DS1 had one done when he was around 1 and he handled it okay. They can be out of it when they come to, but I was laying with him as he woke and it helped.

I hope you find peace with whatever your decision may be.

[RaisingThemLeft]

She's so adorable. That little button nose and those lips! I would lean towards the MRI I think. My youngest had a cat scan for premature closing of the fontanels when he was 5 months old. It was no big deal. He did not have to be sedated for that, but he was sedated when he had tubes put in his ears and he was out of surgery and awake within 10 minutes. I would think it would be similar sedation used during an MRI.

[Tweet]

Absolutely I'd have the MRI.However, this is coming from a mother who's concerns werre blown off for a long, long time . An MRI on my son 2 years later did in fact show a problem (his was tethered cord, so of course different issue).

I will say that in addition to the Versed, the sedation was not at all intense. It was just enough to keep him still and he had no breathing tube or IV. That did ease my concerns somewhat. The MRI lasted not quite an hour and that was for both his spine and his brain.

[Tweet]

And to add that his sedation for that was the same as it has been for his 3 sets of ear tubes. The MRI did last longer, though.

[Sputterduck]

She's so adorable. That little button nose and those lips! I would lean towards the MRI I think. My youngest had a cat scan for premature closing of the fontanels when he was 5 months old. It was no big deal. He did not have to be sedated for that, but he was sedated when he had tubes put in his ears and he was out of surgery and awake within 10 minutes. I would think it would be similar sedation used during an MRI.


How did you get your 5 month old to lay still for a cat scan? My son at 10 months old had to be put out with propofol.

[Wildf1ower]

How did you get your 5 month old to lay still for a cat scan? My son at 10 months old had to be put out with propofol.


My son actually had to have CTs and MRIs as a baby and for his CTs I stood over him and sang to him to keep him still. It was a fast test so it worked. This MRI for DD will be LONG, though, so she'll need to be put under. I seem to remember reading some debate about which drug is safest for infant sedation? Does anyone know what I'm talking about? I'll definitely be googling it.

[Sputterduck]

My son actually had to have CTs and MRIs as a baby and for his CTs I stood over him and sang to him to keep him still. It was a fast test so it worked. This MRI for DD will be LONG, though, so she'll need to be put under. I seem to remember reading some debate about which drug is safest for infant sedation? Does anyone know what I'm talking about? I'll definitely be googling it.


I don't know but I have always talked to my son's anesthesiologist's ahead of time. I always ask what drugs will be used and then research them. The internet has good info on almost anything, just make sure you are getting good medical websites. :)

And if the anesthesiologist is too strict wrt to breastfeeding times before the sedation, compromise. I haven't met one yet that won't compromise although some are not exactly happy about it. But then again, I come armed with studies and statistics galore.

[Wildf1ower]

How many hours do they usually say they need to fast beforehand, do you know? I can't remember, it's been so long since DS had these tests. I'm thinking it would be actually easier to have it in the afternoon so that I can nurse her in the morning and drive there (an hour) and then be able to more easily keep her happy without nursing vs. trying to get up and drive there when she wasn't able to nurse, which she does a LOT in the early morning hours.

[Sputterduck]

How many hours do they usually say they need to fast beforehand, do you know? I can't remember, it's been so long since DS had these tests. I'm thinking it would be actually easier to have it in the afternoon so that I can nurse her in the morning and drive there (an hour) and then be able to more easily keep her happy without nursing vs. trying to get up and drive there when she wasn't able to nurse, which she does a LOT in the early morning hours.


It depends on the anesthesiologist and it depends on the age of the baby. For that age I think they generally want 6 hours. I can't remember exactly though.

Some anesthesiologists don't realize that breastmilk stays in the stomach much less long as formula. And also breastmilk babies get much fussier having to not nurse for long periods of time because they are hungry and can't go for so many hours between feeds. So they end up having to deal with a very upset little baby.

When my son had his cat scan I think we compromised down to 3 hours? And I promised to only feed him my foremilk as much as possible to cut down on the time it was in his tummy. Basically I just nursed really quickly and stopped when my boobs started to let down on that last feed. Prior to this conversation, the anesthesiologist didn't know what foremilk and hindmilk were. They don't teach that stuff in medical school.

[cream_city]

She's adorable! I would lean toward doing the MRI as well.

[PSMommy]

Is there a way you can schedual it around her nap?

We had a CT scan done with Serra when she was a few months old, We woke her up at 4am and didnt feed her or let her sleep, then right before the procedure I nursed her and she fell right asleep and slept right through it.

I would have the MRI done.

She is SO darling!

[Wildf1ower]

Bumping for update.

[still_me]

Thanks for the update.

Did they say what is causing that to happen with her head and with her pupil?

[Wildf1ower]

They don't know - I still don't know for certain if she has "Horner's Syndrome" or not, which can be congenital or caused by birth trauma. DD was a c-section, so I doubt it was birth trauma, unless my doctor was really rough in pulling her out (??) but she did have some significant issues with her placenta and a true knot, which is probably totally unrelated but I've theorized in my uneducated mind that if that knot started around her neck before it slipped around her body into a true knot, maybe it could have caused damage - probably not. As for her head, I guess that's just the way she is - it doesn't look huge, IMO, and DS has the back left side of his head stick out more, so I've wondered if the fact that I tend to favor nursing side-lying on my left (so baby is facing me on their right) could cause that? I really don't know, but what I do know is the MRI was clean and she seems happy and healthy, so I'm trying not to worry about this pupil thing. They do say 20% of the population has slightly unequal pupils, but obviously not as much of a difference as DD.

[cream_city]

I'm glad the MRI came back clean!! And that you don't have to worry now.

[Earthmama]

Me too.
She is such a cutie.

[JudyJudyJudy]

I'm really glad the MRI didn't show anything wrong, but I'm sorry you're still concerned.