Big MRI concerns...please read if your kiddo has had one

[APToddlerMama]

My son's neurologist wants to do an MRI of his brain. I am really feeling like this is premature. They are specifically looking for tuberous sclerosis which I think is a maaaajor long shot, to the point that unless there is something ELSE that could pop up, I don't really want to have it done. Plus, I don't know what they'd do for him if they found it anyhow. Additionally, they want to send him to genetics after if nothing comes of the MRI. I'm tired of him getting poked, EEGd, and now this. Anyhow, I am just wondering from those of you whose kids have had one, what did you find out? What it helpful at all? I do not like the idea of sedation one bit... and I have lost all faith in doctors anyhow. Plus, they don't want to hear it from me, but he is suddenly making huge huge progress in his speech which is a big part of why they want to do this in the first place....I should add that it is the mild gross motor delay, major speech delay, hypotonia, and hypo/hyperpigmented spots, supposed epicanthal folds on his eyes which were just noticed for the FIRST time last week, and weird toes that cross one another in one place which is the reason they feel we should do this. All of these things are also noted in other family members who are just fine with the exception of the epicanthal folds and developmental delays (and I don't see the folds...and am semi-trained from work to look for them...and ped never brought this up nor dev. ped) Please help mamas!

[NiteNicole]

My daughter had one because she had (has, but is now under control, mostly, with meds) a painless limp that eventually turned into an inability to walk without assistance. It sucked, I won't lie, but we were ruling out brain tumors and such so it was necessary.

She could not have done it without sedation, but coming out of it was horrible. Be prepared. SOME kids wake up fine, but most cry. It's heart wrenching crying. She screamed and thrashed and peed on herself. When it finally all wore off, she was fine and she remembers none of it and immediately started demanding food. If I had to do it again, I would. There was no other way to get those results and like I said, she was fine half an hour later.

Just prepare yourself and make sure someone else goes with you because it is scary when they wake up.

Big, big hugs to you and lots of good thoughts. It's so hard to make these calls, especially when they've already been through a lot. I am so glad I have a ped and neuro we really trust because at this point if they say it's necessary, I can believe, truly, that it must be.

[fairejour]

My daughter had an MRI. It was to determine if her inner ear had a nerve and if everything in there was right (no tumor, damage, etc) We found it to be quick and painless. She was sedate, but woke up in about an hour, but was "drunk" for the rest of the night. My daughter's MRI was "required" to get her CI (but of course the CI was never "required" )

Would finding this on the MRI change the course of treatment? We were asked to do one earlier and didn't because it would have changed nothing. She wasn't getting a CI at the time, so the path was the same with or without the results.

Is there a possibilty that the MRI could show something urgent? If so, I would do it, I would hate to find something that could hae been treated earlier with a better sucess rate.

[EveryBabyBookMom]

My son had an MRI to rule out brain abnormalities and to make sure all was ok with his pituitary gland. He has growth hormone deficiency and they won't treat it without the MRI. It all went fine. He was not sedated, but I did give him one of his anti anxiety meds before taking him in.

You might ask if there is another option besides total sedation. Something like Versed? My toddler recently had surgery for which he had to be sedated and he came out fine after sleeping a long time.

My suggestions for post sedation: Let him wake up on his own. Do not let nurses coax him out of his sleep. This will allow for a more gentle waking.

Also, give him juice, not water to drink afterwards. Straight water is more apt to cause nausea and vomitting post sedation.

Good luck.

[askew]

My daughter had one and she did fine. They did it to look for brain injury and determined she had a stroke in utero. I am glad we had it done, even if it showed nothing, just to know that the brain was ok. From what you list though, I would go through with a genetics consult just to rule that out as well. My best suggestion is to have the MRI and have the order for the genetics labs at the same time. That way they can draw the blood for the microarray or chromosome analysis while he is sedated and he won't even know. My DD is having tubes in a few weeks and we have a whole list of other orders from her specialists so we can do it all at once. I would much rather they take her blood while she is sedated and can't be traumatized by it.

[mekat]

I would think even if you opted out of the MRI genetics is probably going to want the MRI too rule out neurological problems as well. They have to know in what direction to look and the more info they have the better. Smaller deletions and duplication will not show up on a standard karyotype test. My son's karyotype tested normal until they did more indepth genetic testing. If you feel uncomfortable ask for the genetics referral and let them decide if the MRI is necessary. If you have two specialists saying to do it then I would do it. MRI's are not high risk. There isn't any major radiation risk like in multiple CT scans because a magnetic field is used. Most places will want the child put under unless they can willing hold very still which is very unlikely in most younger children. If you go though with it you can call the anesthesiologist's office with your questions directly, the MRI place should be able to give you their number. Please, please use only a children's hospital for this testing. It is just better to have specialists who know how to treat children because children react very differently from adults and most adult facilities don't keep enough proper equipment on hand to truly help a small child in the extremely unlikely event something bad should happen.

[2boyzmama]

I would go to genetics first, that way if they want any tests done, it can all be done together.

My son had an MRI at 8 weeks old because of breathing issues, aspiration, severe reflux, and failure to thrive. They were ruling out brain malformations, and found none.

He was sedated with chloral hydrate, and it SUUUUCKED when he came out of it. He screamed...for hours. I called the hospital and they said that it was normal. I did not like it one bit.

For every sedation since, we've avoided chloral hydrate and used versed instead, and it works wonders, and is very easy for him to come out of.

[hdirks]

My daughter had 3 by the time she was 7 months old. While it is a pain and noone ever wants that if it is something they could learn from it I would have done it. While ours just stump our doctors everytime (undiagnosed and noone knows anything) it was ok. She was sedated all 3 times with different types. She did fine with it but pretty much slept the rest of the day. Sleep schedule was a little off for the next day but she was back to normal after that. It's not as scary as they make it sound! I think the worst part is them not being able to eat in the morning. Good luck and hugs!

[momtoalexsarah]

I would do genetic first - and yes given the list of stuff genetic would be on my must do list. Genticts is also non invasive - actually can be a pretty cool appointment. The will likely want blood work and that can be done at the same time as MRI. MRI is a pain to get done - but not at all harmfull. The sedation isn't so bad (although my DD's was done with a full general and Intubation because of other reasons) Anesthetics are far safer then they where 20 years ago. My DD's had 7 GA's and only cried when comming out of the first one,and that was because they had to wake her due to breathing difficulites and the need to either mask or re-intubate her if she didn't wake.

[APToddlerMama]

Thank you all so much for your thoughtful responses. I think I will go ahead with it... I am even more fearful now knowing about all the bad responses to sedation, but at least I won't be surprised when it happens. Very good idea on having genetics take blood while he's "out" too! I am going to look into that. Unfortunately I don't think we'll be able to get into genetics before the MRI but I'll give it a try. Do they have to put in an IV to sedate them?? That will be dreadful....

[2boyzmama]

Originally Posted by APToddlerMama

Thank you all so much for your thoughtful responses. I think I will go ahead with it... I am even more fearful now knowing about all the bad responses to sedation, but at least I won't be surprised when it happens. Very good idea on having genetics take blood while he's "out" too! I am going to look into that. Unfortunately I don't think we'll be able to get into genetics before the MRI but I'll give it a try. Do they have to put in an IV to sedate them?? That will be dreadful....

They can give him something oral before the IV. You can also request that they use EMLA, which is a skin numbing cream that is put on the skin an hour before the IV. You have to have a prescription, so ask about it before you show up for the MRI.

But really, my experience with blood draws and IVs for my kids have been pretty good, the nurses and techs are very used to dealing with kids and have done a good job of not poking more than necessary (i.e. looking for a really good vein before trying to poke, calling in someone else if they aren't successful right away, etc). How old is your son? You can also ask for Child Life to be there, they have lots of experience working with kids to help get them through procedures.

Unfortunately you won't know how your son will handle sedation meds until he has them. But, at least know that it's unlikely that he'll remember anything if he has trouble coming out of them. An adult friend of mine recently had her wisdom teeth pulled, and she was really aggressive and combative when coming out of anesthesia, but doesn't remember a thing. Another friend of mine, again with wisdom teeth, was sobbing and crying as she woke up, but doesn't remember any of it.

[Lkg4dmcrc]

My son had a brain and spine MRI before age 2 and he did fine with sedation. He also had very bad cold like symptoms at the time and the anesth. threatened to place him in the PICU for monitoring. He did just fine though.

[by-the-lake]

My son had an MRI under sedation just today! Everything went well. The nurses and Child life were excellent, the anestesiologist was accomadating, and my son came to just fine, just sleepy.They used nitric gas, then another gas, to put him to sleep before the IV.
i was terrified, but he did super well (just waiting till next week for results)
Good luck to you and your LO!!!

[KatWrangler]

Gabrielle has had 5 or 6 of them. I have lost track.

The only problem she has had was when she had Chlor Hydrate (sp?) she woke up and they couldn't finish.

Oh and when they gave her Versed. Oh, nasty stuff. She acted drunk ALL day long. Even when we put her to bed she was still off. I won't let them give that to her ever again. I didn't know they gave it to her till after she was out of the MRI. I had been warned about that stuff from Primary Children's in SLC before she had her 2nd de-tethering.

[cchrissyy]

My guy had a brain MRI at age 4 (?) and it went fine. No problems with the sedation, no anxiety before or after, the whole thing was really not a big deal. We did use a children's hospital he's very fmailair with, and they have good Child Life folks, so that helped.

[Green mama]

My son had a brain MRI at 9 mos old for macrocephaly. He did wonderfully through the sedation and awakening from the procedure as well. He actually went right into his usual routine (we took it easy) that same day with no lasting grogginess.

For us, I would say it wasn't terrible and we did gain very important information from his MRI.

[pimms]

We also did an MRI for information. We were encouraged to do it early on, as my son had CHARGE Syndrome and has struggled with his balance/coordination. They thought there could be something wrong with his cerebellum, although there would be no difference in our treatment if anything was found to be wrong. We really were not interested in having the MRI for that reason, and that he had had 3 surgeries as an infant and the thought of putting under anestesia again was not alluring. We didn't want to put him under just for the sake of information. In the end we did have the MRI, two summers ago (at age 5) he had a seizure-like episode and his ekg came back abnormal on one side of the brain. We always said if there was a "reason" we would go ahead and do the MRI, and that turned out to be the reason. Everything came back normal, so now we have that peace of mind. He handled anestesia the same as his surgeries, so that was not an unknown for us. He cries coming out, and uncomfortable. But after a few hours he was fine and actually went back to school the same day!

I would also recommend a Children's hospital if possible and bundling as many procedures as you can while he is "out". An IV shouldn't be too difficult with a trained pediatric staff, and they have that numbing cream, I can't remember the name of it. Ask for that before he is poked.

[mamaoftwopeas]

I just wanted to chime in. My son had an MRI to check for any brain abnormalities at 16 months. He was put totally under. He was very upset coming out, but before he went in they gave him something orally, and he was asleep before he left my arms, and when he came out, we had to walk across the hospital to his room he was in, and they let me carry him because he didn't want to lay on the bed. It wasn't as bad as I thought it would be, and everything was normal, which made me feel a lot better.

ETA: his was for microcephaly among other things.
oh and they used an IV but he was asleep before they placed it, it was a question I asked before hand. Your best bet though is to find out what Their procedures are, and what extra things they can do to make him more comfortable.

[isisreturning]

My DD had brain cancer at age 6 months and has had a bazillion MRIs - and a bazillion sedations, too. Sometimes she wakes up drunk and cranky. It's better if she can wake up on her own after the sedation drugs are turned off (as opposed to being woken by the medical staff). That will depend on how much time they have allotted for you DC to be in the post-sedation recovery area. It can be unpleasant to deal with a drunk and cranky toddler, but you'll get through it and things should be a-ok by later that day or the next day.

They use a gas mask to put my DD to sleep before starting the IV. She doesn't like us holding the mask on her face but she goes to sleep within 30 seconds. Much less traumatic than holding her arm while they poke around for a vein. They use propofol as the IV sedation drug and she has only ever had problems with it when she had to be sedated daily for radiation while also having pneumonia. During that time we switched to dexmetatomidine. But otherwise, propofol has been great.

Best wishes -

[homemademomma]

My daughter has had 2 MRIs the first was to rule out a brain tumer, and it was very emotionally draining for me. It was her first big medical procedure, and I was SO worried. Everything went fine- being NPO wasn't as bad as I thought, and the worst part was definitely waking up from the gas. She was very cranky and disoriented!
She had her second MRI a couple weeks ago, and it was SO much better. The biggest difference is that they only used IV sedation. Without the gas, she woke up much easier- just a little drowsy.

I think MRIs are a great, relatively non invasive diagnostic tool. Even if it is a long shot, it is great to be able to check it off the list, you know?