My 5 year old is having lower GI issues. A specialist recommended he have an MRI of his abdomen and pelvis to rule out blockages and tumors. I called Radiology to get information. The Prescreening Nurse told me children have to be sedated up to the age of eight. They are sedated with three drugs: Nembutal, Fentanyl and Versed. I informed her of VHL and the areas of the body it affects. Once I mentioned adrenal glands she put me on hold and went to speak to the Sedation Doctor (not to be confused with the Anesthesiologist). The Sedation Doctor felt he should be put under general anesthesia for safety reasons. My son's Plasma Free Mets have been normal and he doesn't show symptoms of pheos--so I wasn't sure if the mention of adrenals made the Doc nervous or if I was uneducated. So, I called the Anesthesiologist, whom I've dealt with in the past, and questioned him. He said that my son's VHL is not the reason he should be put under general anesthesia. He said it depends on the individual child, how he will react and how long the whole process will take. If the child is freaking out or he moves in the MRI tube, they will send us home and make us reschedule the MRI under general anesthesia. Also, if the Sedation Doctor doesn't feel comfortable sedating the child, they will make us reschedule under general anesthesia. He said that anesthesia could affect one's blood pressure. The sedation drugs COULD affect blood pressure, but they're not really a concern. I just had my son's Plasma Free Mets done and I'm waiting on the results. I'm afraid they may come up slightly FALSE elevated because he freaked out as soon as the nurse walked in. He did lay quiet and still for 30 minutes prior to freak out.---so I'm just hoping. The anesthesiologist said that even if his PFM test comes up slightly elevated, it's still okay to have him sedated.
All that being said, I've elected to have my son put under general anesthesia for his MRI. I'm afraid he may not cooperate. The anesthesiologist said it isn't any more strenuous on his body, just more strenuous on your pocket-book.
Anyone have any input????? All comments and advice is welcome. We learn from each other here.
Sincerely,
Marie
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Children, MRIs and Sedation
- By marie3
- Posted February 24, 2007 at 10:45 am · 7 replies
- In Parenting issues
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7 replies
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- By Rick
- Posted February 25, 2007 at 10:16 am
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Inquire about where an open MRI can be performed in the area. An open MRI is an apperatus where the patient lays on an open table and not in an enclosed tube. My son (12) has open MRI's and my wife gets to be beside him and hold his hand during the procedure!
I hope this is an option for you and good luck.
- By marie3
- Posted February 25, 2007 at 12:46 pm
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Rick, Thanks for your response. We do have a facility near us that has an open MRI machine. I do not think my 5 year old could lay completely still for 1 1/2 hours, even on a couch with the TV on. Sincerely, Marie
- By Karen6
- Posted February 26, 2007 at 12:45 pm
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Dear Marie,
I just finished reading your posting. My son was diagnosed when he was 4. We have had many MRI's and we have a lot of experience. Oh, by the way, my son is 10 1/2 now. What we have found is that the medications used for sedation were more toxic to him than the anesthesia. Plus he has a needle phobia. We tried to use just sedation about four times. Each time he fought the sedation drugs, so they would increase the meds to beyond legal capacity. Consequently he was unable to function for three days! We changed hospitals and now he is given gas, then the IV is put in, then the MRI is given. He bounces back in less than 24 hours and is back to his normal self. I am happy to discuss this more with you personally. You can email me at us-nj@vhl.org . I will be happy to share any other information with you. We have plenty of pediatric VHL experience.
Karen A.
- By AEckerman
- Posted February 26, 2007 at 5:10 pm
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Hi Marie,
How are you?
It looks like we may be facing pheo #5 with Caleb. He has elevated urine and blood catecholamines. We started out without sedation for his MRI last week - he lasted an hour and twenty, then freaked out. They had to stop the machine twice. Then, we had to reschedule and repeat a lot of pictures two days later under general anesthesia. It was very stressful for him and we won't attempt another "non-sedated" one for a few years...at least.
As long as there is a good anesthesiologist present and they are aware of pheos - it really shouldn't be a big deal. They don't intubate during this type of general anesthesia and that is where a lot of the concern lies. Even asleep and unaware, the body seems to "fight" that tube and that's when elevations in blood pressure can, but not necessarily, be a problem.
Extreme stress can cause an elevation in the PFM test - if it is slightly elevated that will most likely be the cause. But, wouldn't worry about that - chances are it will be fine.
I hope his GI problems get worked out.
God Bless~
Alison
- By marie3
- Posted March 1, 2007 at 11:14 pm
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Thanks guys for your input. Your stories reinforced my decision to put my son under general anesthesia. Let me get this straight though. First they use the mask to sedate him. Then the anesthesia is administered through the IV? I thought anesthesia was delivered through the mask. Please explain.
Karen, thanks for the E-mail address. I always have questions.
Alison, I'm sorry to hear Caleb may have another pheo. He's been through so much already. How's Cloey? Has she begun ocular injections with Dr. Chew? I remember you were concerned that she may not cooperate without sedation. I just received ocular radiation in Boston.
Talk to you soon.
Marie
- By AEckerman
- Posted March 2, 2007 at 12:19 am
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Hi Marie,
Depending on the anesthesiologist, they start them off with a little gas so that they don't have to go through the IV process awake, and then the "heavier" stuff is given through the IV. I wish all doctors would do it this way, but some elect to use only the IV.
As far as Chloe, we are waiting to hear from Dr. Chew regarding a possible study. Her vision remains unaffected, which is good. I hope it stays that way until we can find a possible treatment. Is the ocular radiation working for you?
Yes, Caleb has had his fair share of pheos. It's only been four months since his last surgery.
We will just have to press on and deal with it.
God Bless~
Alison
- By marie3
- Posted March 4, 2007 at 9:08 am
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Alison, It will take one to two years before we see any results. As slow growing as the tumor is, it slowly shrinks. I was told that hemangiomas respond well to radiation. I had proton beam radiation.
Thanks for all the input (once again).
My best to you and your family. Stay strong! I will keep Caleb and Cloey in my thoughts.
Sincerely, Marie
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