Feeling guilty- AGAIN!!! | Autism PDD
A few months ago my son's neurologists wanted me to bring him for a MRI of his brain and an EEG. She told me that these tests would 99% come back normal that they just want to rule out any medical conditions.
OK I understand the importance of ruling out God forbid a brain tumor or something of that nature. BUT I didn't want to put my son through something that will most probably come back normal. The whole putting him to sleep and the stay one night in the hospital will be a lot for him to endure.
Maybe I am just being selfish and I don't want to put myself through it either. Has anyone else opted out of these tests? I really value all of your opinions, Do you think I should take him for these tests? I'm just indecisive again!!!!
Hi,
My son's MRI is scheduled for the end of the month but as an out patient. I share your concerns and I recently posted a topic about my anxieties, especially with the anesthesia and his fear of hospitals and doctors and change in routine. My son also has headaches, he had one just last night so his Pedi Neuro wants to make sure that something else is not going on.
The feedback I got from other parents is that it's not that bad and that my son will be able to tolerate it. I will be ecstatic if it comes back normal. My husband thinks it's a waste of time but I'd rather know for sure.
Don't think you are being selfish, you are just protecting your son. Hope you come to a decision you are comfortable with.
We have also refused an mri for our son with microcephaly(no known cause). He did have an ultrasound at birth so we know that his brain has all the right vetricles and sections. An mri would show a lot more. We live in a city with a university hospital and I just don't want a beginner sedating him. I was also told that if they did find something chances are they wouldn't be able to fix it anyway, no tumor is suspected. It would merely give us a better understanding of what his future will be like, to be better prepared for what will come.
We told them our concerns and that since they couldn't fix it anyway, that rarely is anything found and that he is learning and progressing and getting the therapy he needs we are not at this time willing to have an mri. they said..."Maybe you are the type of family that can live with that decision"..what does that mean???I know his pediatric neurologist as she treats both my children so I don't think it was an insult.
However...we are scheduled for genetic testing where I am sure they will once again suggest that it would be helpful in finding a cause for the microcephaly. Everytime the doctors bring it up I listen carefully to what they have to say and then think about it for a week before i decide (my husband never wants him to have one).
We were told it is an outpatient procedure but they still get sedated and intubated. Maybe when he's older and can hold still on his own, if there still seems to be a need then we would do it.
I'm not against having it done, I'm just worried about sedating someone so young when it seems it's just to satisfy a curiosity. I would never tell someone else what to do with their child on something like this, I too am too scared to have him sedated BUT wish that I had already had it done.
We were told the same thing, and unfortunately we fall in that 1% where something did show up. It has helped tremendously with treating our son's seizures, so I'm definitely glad we decided to have it done. Things showed up on both his first MRI and EEG. It the long run though it did hurt when we were trying to get a dx as far as behavior and basically autism. No one wanted to diagnose him with anything because of the underlying brain problems. Mason was dx'd with autism this last April by a doctor that finally told us we need to treat symptoms, not the diagnosis. But unfortunately we missed out on some early intervention that could have occured.
You are not selfish, you are watching out for your kido and I would think any parent would question the test and procedures for there kids, they are scary so why do them if they are necessary. I have the same question as you right now...trying to figure out if it is really needed and how it would beneft her. We are seeing a pedi neuro soon and I already am leaning toward no MRI but I will ask the dr what he is looking for on the MRI that could be treated? If G has seizures I would def do it, or if she was regressing quickly with motor, speech, yeah. I should ad that DD had ear tubes put in at 18 months and that was a nightmare!!! She woke up freaking out for about 30 minutes...I thought it was pain so they gave her some pain meds and finally I said this isn't working and walked out and she was better as soon as we walked out and looked at a flower and said, "wa wa" That was her word for flower back then.. but omg that 30 minutes of her failing and kicking, screaming bloody murder... The nurses say it was common and it is a strange feeling coming out of anesthesia and she should be fine as soon as we get out of the hospital. and that was just twighlight anesthesia... But I've some kids doing fine with anesthesia. I would defienently not put him through anything stressfull or frightening if you can avoid it im glad you asked for opinions
because there are some pros but mostly cons if nothing is wrong with the child i feel these things can be very scary and even truamtic for asd children
and if you his mother who loves him and knows whats best for him has an issue with the idea then listen to your gut instinct i think its called mothers intuition
i just turned 21 years old and am autistic and the thought of an mri and a night in the hospital scares me even at my age
as i had a pretty bad experience with one of these when i was 13 i dont really want to get into it though since sometimes its upsetting to think about since i .have a phobia over these kinds of things.
i remember also replying to sharons post and gave some tips which i will be happy to retype
if he must get it remember to stay with him at all times and bring stuffed animals for him to hold while hes being put to sleep in my opinion it is definently not a good idea to leave him alone
in situations like these the child usually depends on the parent more then ever for comfort and an autistic child will probably see something like an mri very different the an an nt child would
(i know i can speak from experience)
but if iwere you i would opt not too but if you must please consider the tips oive given you or pm me if you have any questions as to how an autistic would perceive this sort of thing.
From what I understand, an EEG is recommended only on suspicion of clinical or subclinical seizures. Ask the neurologist if she suspects them. An MRI is not specifically mentioned in the official guidelines, but a lead test and proper hearing test are of prime importance, so I hope those tests were covered first.
You can read more about the official neurologist guidelines here:
http://www.autism-pdd.net/forum/forum_posts.asp?TID=18139&am p;KW=neurologist
Good luck with everything.
DH and I decided to cancel a sedated EEG appointment for our son. The regular EEG was a no-go (ds wouldn't let the tech mark his scalp for the leads), but the incident that prompted the need for an EEG was minor and not repeated. Even the ped said that the results wouldn't likely be worth the stress and risk of sedation, so we felt justified.
But I realized that I would have seriously resisted if the doc insisted it was necessary. IMO, trusting your instinct is so very important. You know your child better than anyone else, and nothing says you can't change your mind down the road if the situation changes or your son starts tolerating this sort of thing better.
Good luck!
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