Hi, hopefully I've got this in the right section.
We have a daughter, now 6 months actual, born 7 weeks early. She hasn't rolled over, laughed, and doesn't hold her head up very well (either in tummy time or while being held). She acts a little "different". I honestly don't see it but have had comments from the peanut gallery on it. She has one turned in eye and doesn't use that side of her body much (it's not hanging there stroke-like, just doesn't seem to use it as much). We were referred to assessment and then approved for OT. After our OT thought maybe lack of sight was precluding development, we had it checked out, and the eyesight/retinas/so forth are perfect in both eyes.
Now we've got a referral to a neurologist for the eye thing and the hypotonia, and an advisement from the ophthamalogist that we should be prepared for an MRI or cranial u/s.
(We had extensive genetic screening preconception so already a ton of congenital conditions are ruled out.)
We are non-vaxing and exclusively breastfeeding (and foresee doing so for another couple months at least) and don't favor the common use of various pain meds/sedatives unless absolutely required, the idea of sedating DD is not comfortable.
I will go to the neurologist and if there's something exigent then we'll talk differently about the MRI, but for now, my question is, in the opinions of those that have been there, can I reasonably turn down the MRI if the suspected problems are non-degenerative or speculative? Like if the neuro says, this looks like cerebral palsy, let's do a MRI - am I a reasonable person to say no? Have any of you said "no, let's wait" to the neurologist in a similar situation?
You should weigh this out with the doctor as to whether or not to do it. Let them know you concerns and feelings, so they can take that into account. Ask lots of questions. If you are not confident in their opinion seek out a second opinion.
hello and welcome. I haven't been in your shoes (my DD has autism), however, my thoughts on the situation:
The questions I would ask are about what kind of interventions they would be recommending based on the outcomes of the test, and how much of a difference this testing will make in real times in your DD's treatment for the next year or so.
I'm very big on early intervention. I wouldn't recommend waiting on a test that might be part of the gateway to your sweet baby getting the best services and treatment.
For me, part of having a special needs child has been letting go of how I was planning on raising my kids, and just parent the child I have in front of me. None of the parenting books that I read were about the situation that I found myself in, and so I had to let go of all my preconceived ideas.
but everything has pros and cons
Thank you both. Yes, this hasn't been exactly what I expected :) From the planned chemical free homebirth to the rushing to the hospital at 33 weeks ... most things have been shot to heck so I'm trying to hold on to what I can. Maybe that's fruitless.
Kind of divergent from the question, but is it common to not be able to see the problems in your own kid? It sounds like refusing MRIs is not common (since a bunch of people didn't say "oh definitely skip that useless MRI"). Maybe I have a denial issue.
most things have been shot to heck so I'm trying to hold on to what I can. Maybe that's fruitless.
Kind of divergent from the question, but is it common to not be able to see the problems in your own kid? It sounds like refusing MRIs is not common (since a bunch of people didn't say "oh definitely skip that useless MRI").
There are so many things we get to hold on to, such as our unconditional love for our children and our commitment to be mindful and present in our parenting. The specifics change, but the underlying values don't.
This board runs slowly, and MRIs don't come up for all special needs. I wouldn't read too much into the few responses. It sounds like you are approaching the MRI decision very mindfully. Everyone's situation is slightly differently, and
I think that as parents, we see our beautiful babies for the miracle that they are and naturally focus on that.
but everything has pros and cons
You should definitely ask the neurologist all of your questions and raise all of your concerns about an MRI. Ask why they want it done, what they think they might find, how the results might change the treatment options, etc.
My son's issues are different. A brain MRI was first recommended to us by one of his specialists just after he turned 6. After talking with his developmental ped and our family doctor we decided to wait. We just did the brain MRI in December, when he was 8.5 years old and started displaying some new symptoms. He did need sedation (he cannot cooperate with the procedure). He handled it well. He slept a little longer than they expected and was grumpy for a little while afterwards. His only side effect from the medication was that he had the hiccups the rest of the day. The results were helpful in that the test ruled out organic brain problems.
So declining an MRI now does not mean declining it forever. It can mean postponing it until your child is older, bigger, stronger, or until you have more information or until something changes.
I know you said that you did preconception genetic screening, but have you had any genetic testing done on your daughter? In your shoes, I would probably request a chromosome micro-array before doing an MRI (if your insurance will cover it). It requires a blood draw and that's never fun, but it's easier than a sedated MRI. It may or may not provide any answers (or as in my son's case, it may even raise additional questions). But I would still ask about doing that before an MRI.
As far as not seeing problems in your own kids - I don't think that's unusual. Sometimes parents are in denial. Sometimes parents just don't know what "normal" development is supposed to look like. My son is an only child, so for my husband and me, he IS our version of "normal" and all the other kids we encounter seem odd.
Hugs. Hang in there.
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)
Hey, we have been through similar situations. We have a ton of specialists for DD, and before any procedure I ask the medical provider: What information are you trying to gain with this study? How will that information change the course of treatment for my DD? Are there any alternatives to this procedure? If they say no, I ask, how was this information obtained prior to the availability of this study.
Then I weigh the risks/benefits. For example, could you have a CT scan without contrast instead? You should be able to swaddle your 6 month old and if you did the scan during nap time, they might be able to do it without sedation.
I will say the sedation that the use for a 6 month old (Chloral Hydrate), is mild and generally makes them very sleepy, but does not put them under deeply. An MRI of the brain takes about 20 minutes, so to do with with and without contrast would be a 40 minute scan. DD just had one last month, we went in at 10 and were out by 2 pm, and she did beautifully. We also see a neuro opthomologist who had been much better for us than the pedi optho.
I would do the MRI in your situation. My dd had the MRI in the NICU for apnea issues. Showed us that she had had a stroke in delivery. I think at this point you want to rule our brain injury or tumor, as a way to narrow down what is causing the hypotonia. Better to know, I think- and the MRI is a pretty painless procedure for the little ones.
My dd was born 10 weeks early and has different "stuff" going on. We ended up going the MRI route and I am super glad we did, since it found signs of damage we would have never known about. They wold have just suggesting things to treat symptoms of other things. Once the MRI was done, we knew what was going on and could move forward with some answers.
But yes I hated the sedation and was freaked out the entire time
Waldorf Mom to 9 blessings ~6 by birth and 3 by fost/adopt~
Thank you all!
So, we saw the neurologist (referred to him by a couple of mothers who preferred them over the other guys around here) and he said she's got low tone; he didn't seem surprised by anything particularly. He wants an MRI without contrast to see if there's damage, but there is no way to treat said damage. If nothing shows on the MRI, then he wants the CMA. I think he thinks something will come up on the MRI, but either way the answer is therapy. (No signs of tumors or so forth.)
I am so curious about what is going on in her head... but in this procedure she will have all the risk (anesthesia) and we seem to have all the benefit (knowing if it's brain damage or not), is it fair to her?
As a MRI tech I could tell you that there are different types of MRI machines. I am all for MRI's because they are safe and efficient. The scans could detect illness and diseases that could be stop dead in their tracks from being caught early on. I work with 3.0 Telsa MRI and it is so fast. I could do a scan without and with contrast in a matter of 15 minutes!
Now, as a mother. Sedation is beyond scary and I will not jump to that choose right away. There are alternatives to sedation is one is putting the child in a light trance. The child is awake but sleep. So there is no need for breathing tubes. They will have a IV attached to their arm and a doctor will stay in the MRI room with the child (as you may watch through the window btw) and give low doses of volume to keep the child in "trance" have you. As soon as the medication is done being given, they child will wake up. However, they will be sluggish for about a hour after. However, a favorite hearty meal and plenty of fluids will flush their system right out.
Whatever you decide please don't be fearful of our technology that we have today. It's amazing how much we could help our little ones. Good luck and please feel free to message me if you have any questions. :-)
We've cancelled the MRI .... we're going to continue working with an occupational therapist and for now, the inside of her brains will just be a mystery. If all it is (as the neuro thinks), is untreatable brain damage, no need to name it for now. :) Thank you all very much for your input.
It is def your choice mama, but I had and MRI done with my bb to rule out brain damage. But even if they found something I would have time to research how to help him. I think having knowledge is definitely power when it comes to finding good care for our bbs. Good luck.
I was also in your shoes. Preemie, missing many milestones. An MRI was indicated and we reluctantly had it done with similar worries as you are feeling now. We did find a small area of damage in the motor region likely from a past hypoxic event while he was on the vent. That info helped us target therapies and I used that information to find a clinical trial for using his own umbilical cord blood as treatment. We’ve had great success with the cord blood infusion. I just wanted to share since the field of using stem cells in birth related brain injury is an area of much research and can be life altering, especially when done at an early age. I know that those that don’t bank cord blood are traveling to other countries for treatment. I just wanted to share, since my local neurologist (from a major Children’s Hosp) said there was nothing short of PT/OT and when I searched further found another major medical center that was spearheading this research and was willing to treat my son. Don’t stop researching!
DS2 was born with spina bifida hydrocephalus and needed an MRI right after birth in order to determine exactly how to go about the closure surgery. When thy put him under, they prepared for surgery at the same time, surgery ended up being over 6 hours, so he was out for the whole day (all routine for a baby with SB, he wasn't a particularly severe case).
He had another routine MRI at 6 months, scheduled as a routine checkup, though at the time we knew we were probably heading for more surgery. As it was head and spine, he needed a full anaesthesia. He recovered easily from that one, he was merely a bit crankier for a few days.
As he did need brain surgery two weeks later, there will be another checkup MRI in August. This time, it wioll be merely the brain to be imaged, so it will be done under sedation, by which they mean no aneasthesia, no intubation, just sleep. We've been through so much by now, I am not worried...maybe i'll start worrying as the time approaches, but for kids with SB and HC, MRIs just get to be routine.
In your shoes, I think I'd probably want the information of which brain areas are affected. There are therapies which can target affected areas of development BEFORE the developmental delay even shows up. Maybe you can research whether this may apply to your particular case, and rethink your decision not to do the MRI.
All you ever wanted was to be the best mom for your kid, right? You are. Unconditionally. Scheduling or not scheduling an MRI is NOT about what a kind of mom you are, or what you'd wish your parenting philosophies might be. It's about whether you need the information.
Hi, OP here, I thought I would update on how my daughter is doing.
She's 8 months now (actual) and just started rolling on her strong side, which is great. Her head control is pretty darn good, too.
We saw her pediatrician recently and she was concerned that her development is farther behind than it was... DD is not doing the things a 6 month old would be doing (she's about 6.5 months adjusted) and she is falling more and more behind on those milestones. This really isn't worrying us, because she is progressing. For example, she tolerates being in a bumbo chair now, whereas a couple months ago you couldn't get her folded enough to put her in the chair (tone issues). She looks like a big 3 month old. (When strangers guess her age, they always guess 3 months. I tell them "8 months" without explanation at this point.)
We also went in for a followup for her inward turned eye, which the ophtho found to be more marked than before. She additionally has nystagmus now. It's so funny that we can't see these things ourselves. I actually never notice it anymore, she looks like a normal baby to me until I run into another baby at the store or something and see the differences.
So, we scheduled the MRI. I'll post here after we get the results for anyone that is in the situation in the future.
My DD has a primary dx of hypoxic ischemic encephalopathy. She has lot of issues stemming from the brin injury including global developmental delays. We see a Physical Medicine & Rehab doctor who manages all our therapists (OT, PT, and Speech), as well as taking care of the medications she takes for her tone. As DD has gotten older, she has had more medical needs and our PM&R Doc specializing in making sure we get what we need. You can PM me with any specific questions, but my biggest piece of advice is to schedule an appt with PM&R doc.
Hi, I put the outcome in the first post but that probably isn't the best place for it.
So, we had the MRI. The fasting for 4 hours was a worry to me as DD won't drink from a bottle (therefore, no water or juice two hours ahead of time) but everyone in the hospital expected her to be upset, so when she was, no one was surprised. She woke up from the sedative without incident, only problem was one barf in the carseat. I've seen bigger messes, no problem really, and she didn't seem bothered particularly. I haven't seen any change in her behavior or mood that I might attribute to the anaesthia.
The MRI showed brain abnormalities that may have been from hypoxic-ischemic injury, likely in third trimester. It's a diffuse injury, not a particular area, rather the whole brain is affected. (She was a 33 weeker.) The results explain everything she is doing and not doing, so in a way I am happy. It makes it easier to enjoy where she is right now without questioning why she isn't someplace else in development, if you know what I mean.