MRE this Thurs and change of meds

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Devynnsmom

Devynnsmom

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Jan 11, 2012
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Devynn's MRE is going to be this Thurs (Dec 6). They also changed her meds (started a week ago Sun) from Mezevant to Sulfasalazine. She is supposed to take 2 - 500mg pills twice a day. BUT they were supposed to start her slowly and didn't tell me that. She had a headache for 2 days (may or may not have been related) so they told me to cut her back to one pill a day and slowly (every 4 days or so) up one more pill until she was at 4 a day. I started giving her 1 last Wed and today she will take 1 more in the evening.
For anyone who has had an MRE, do they leave your head OUT of the machine? I called and spoke to someone last week and they said her head would be out of the machine. She is clausterphobic and if we wanted something to calm her we would have to wait until Feb or Mar. BUT if her head is out, she should be fine. I have not told her about the IV, she would refuse to go. But I will tell her about the drink tomorrow. I don't want her to worry, esp when there is nothing we can do. This has to be done.
I'm so nervous and I woke up this morning feeling like a bag of garbage :pale:. I just hope it stays away from her.
Good thoughts would be appreciated :ybiggrin:
 
Hey Samantha ~ Gab has her MRE this Thursday too ! :)

I'm pretty positive their heads are out ? ( i could be wrong of course)

best of luck and I hope you feel better quickly !
:hug:
 
Thank you T :) The guy I spoke to said he was almost positive her head would be out.... but not to hold him to it lol :rof: I'll just be happy when its over. I feel bad not telling her about the IV but I know she would freak out and refuse to get in the car :eek2:
 
I usually take the time in the car on the way to explain the procedure and what they can expect. Keeping the child locks on so they cannot escape. Mine does better if I am truthful sometimes I just say idk. I get that. Hope all goes well. Rowan had an MRE and her head was out. It was a new fancy MRE machine though.
 
I am so sorry you guys have to go through this. We went through MRI last month - wasn't fun but she survived - Kasia is also claustrophobic. Sorry to sound ignorant but is MRI and MRE the same (or the same machine used)? It is possible that here in Germany we have different machines but Kasia's head was IN the whole time. The liquid that she had to drink tasted OK - she didn't mind it at all. The IV contrast however...she had a really bad allergic reaction to it, later, at home (high fever, really bad chills and stomach pain). It went away after 2-3 hours.

I hope that you guys have different machines and she will have her head out.

I will keep my fingers crossed for you guys,

Ania
 
I'm assuming her head would be out of the tube - even if she goes a bit further in I would imagine if she looked up/backwards she would be able to see out. Are they letting you stay in the room? Maybe you could stay where she could see you so she doesn't feel alone. Good luck!
 
Thank you Mary, I try to be as honest as possible too. I will tell her about the drink.. just not so sure about the IV yet. That is really the only thing that she really freaks out about. She used to be terrified of needles, but after the last 4 years of being a pin cushion.. she's fine with blood work :)
 
Ania, I think you are describing an MRE. Here in Canada, an MRI is just the machine with no drinks, or IV's. From what I've been told, an MRI is usually quick (under 30 min) and I've been told she will be in the machine for an hour minimum with the MRE.
 
Sascot, yes they said I can stay in the room. They just called with a reminder and I asked again about her head being in. He asked how tall she is, and said her head SHOULD be out. :)
 
Devynnsmom said:
Ania, I think you are describing an MRE. Here in Canada, an MRI is just the machine with no drinks, or IV's. From what I've been told, an MRI is usually quick (under 30 min) and I've been told she will be in the machine for an hour minimum with the MRE.
Click to expand...

Sorry Devynnsmom, I just got a bit confused. In German it is MRT and they translated it as MRI. We definitely had drink and IV but the it took 20 minutes inside the machine and she was out. Sorry for all the confusion.

But if they say the head is out, it is out and that's the most important thing! Still keeping my finger crossed!

Ania
 
She may have to lay on her stomach not her back .
Is it at a kiddy hospital they should be able to calm her if needed.
DS head was out.
 
FWIW - my youngest had MRI for about an hour for migraines so of course her head was in. The doc ordering suggested we keep her up all night if possible and make appointment super early in the a.m.. He perscribed a kiddie valium (don't know if this is an option for you given it is a GI issue but may be worth asking about) to take 20 minutes before and that kid zonked out within the first 10 minutes of laying there. Of course mommy was a zombie sitting through the hour long symphony of horrendous noises it makes but she was comfortable. She is also severely claustrophobic.

Good luck!
 
MLP yes its at a children's hospital. They said I can go in with her. They said she will be on her back.
 
crohnsinct, We asked about giving her something to calm her. It is def an option, but we would have to wait until Feb or Mar at the earliest. The reason being they would have to book her on another floor where she would be monitored by a nurse. She is having the MRE at the MRI dept which was much quicker. If we get there and her head IS in and she is feeling nervous, we will cancel and re book on the other floor.
 
Great questions! Alex goes in on Wed for his, which I think technically is an MRE because it will take an hour and he's getting both drink and IV contrast. Probably, the docs say MRI because everyone knows what that is. :) I'll let you know about his head. Last time he had one, he slid in and out a few times, but mostly, his head was at the edge of the entrance for the abdominal scan. He's so small too, he wasn't at all cramped in there like an adult would be.
 
I hope all goes well for her. My Grandma is the same way to. If she HAS to have her head in there, Grandma wheres a blindfold and they pumps cold air into there and she listens to music. It helps her.
 
Thank you Jenn, that sounds like what Devynn is having . A drink with the IV contrast. Has Alex already had this one? How was the drink and the contrast?
 
Thank you upsetmom. It is awful :( I had to have an endoscopy and colonoscopy a couple of years ago and all I kept thinking was "OMG Devynn does this and is a pro.." Meanwhile I was feeling like I could barely function doing the prep!
 
Darn! I was hoping the later date was more for anesthsia and not just plain old valium. Sorry. Good luck!
 
Bring Kool aid pack single to split for the barium drink . One single can go into three cups of the drink( yuck ).
 
Caitlyn's head was inside in the machine both times she had hers done. Maybe it depends on the machine. Also they did turn her on her stomach at one point to try to get better pictures. Plan to be there a while. It can take longer then an hour depending on how fast the liquid goes through her gut. Last time they kept having to stop and wait because it took a really long time to pass through.
 
Thank you Kim. Yes they did tell me it SHOULD take an hour, but depending on a lot of things (if she stays still, the liquids moving etc) it could be longer.
 
MRE uses an MRI machine. The E stands for Enterography and refers to the particular procedure done and the part of the body that the study is focused on - the intestines.

It requires a radiologist with specialized training to read the results.

Here in the US the procedure usually involves placement of IV access but not the whole IV pole thing. You just have the needle in your arm taped down for protection just like it would be for an IV but without the tube attached to it. Then they just inject some solution through the IV access to make your intestines contract while they shoot a second set of films.

This is to help them detect things like adhesions and scar tissue strictures.

The first MRE my son had took almost 4 hours from the time he started drinking the fluid until the time they finished his pictures. That's because the fluid didn't move through this gut fast.

The second time took about 2 hours - things moved much faster for which we were both grateful. I don't know if his head was in - he's 16 now and I think it probably isn't a helpful comparison.
 
Thank you Patricia, that was a much better description than I got from the hospital :) I hope things move quickly for Devynn. I remember when she had the barium swallow, they said she moved things very quickly. *fingers crossed* :)
 
V had an MRI of her head last year when we were going all crazy with diagnostics. She is claustrophobic as well and was given a tiny amt of Ativan.
She said afterwards she would have freaked out without it, but hated how it made her feel; can they not give her a small thing like that without delaying the test?
 
imaboveitall, no they can't. They use Ativan as well but said she would need to be monitored if she needed it. I think as long as her head is out, she will be ok. I'm more worried about the IV to be honest.
I've had a head MRI and was given somethin.. atavan I assume, and I slept. I couldn't imagine being in there and being awake. NO thank you!
 
Samantha, does she have to do Fleet Enemas tonight and tomorrow morning before the test ?
Just curious as Gab has to.
Gab is 19 and telling me she's NOT doing it ! LOL
 
No, the only prep is that she has to fast from 11am. We have to get there at 3:30 and the actual test is supposed to be at 5pm. From 3:30-5 she has the drinks and IV I guess.
 
Hmm, I find it so interesting how the same test can be ordered differently.
Gab has to fast, except for water, for six hours previous.
 
Sarah had to fast for 6 hours and last 3 hour was only allowed the smallest amount water to take tablets.
 
Amy's head was definitely out of the machine. Of all the tests, in our experience this was the easiest. Good. Luck for tomorrow.
 
whew, got it done today... Alex was able to eat a little 4 hours beforehand. We arrived 2 hours beforehand to start the contrast. They want a bottle/hour, he did half bottle/hour, which was great, in my opinion, it was making him nauseous. Lastly, just before the scan, they started the IV. I was really mad that the nurse was not more competent, his veins hide from nervousness, or just in general. She tried his hand and failed and got another nurse who got his arm no problem. The scan itself only took a half hour, I was surprised when he came out done. Now I'm worried they forgot to do part of it (just happened with a stool sample, I just don't trust people anymore! :) ). Anyway, he was much relieved. I didn't stay in the room with him, so can't speak about his head being out, but he was definitely in feet-first and not a tight fit in the tube. Now to worry about the results. sigh! Good luck!
 
Izz had an MRI enterogram last year. She drank the contrast with no issues (she said it wasn't bad) and they started an IV. She had to run to the restroom before the test started (i have heard this is common). They injected a drug to help slow her intestines and did some scans. They then injected contrast and did some more. The scans themselves lasted about 30 minutes. She was face down and her head was barely out of the machine, but I was allowed to stay with her. FWIW, the breath holds are long. Work with her beforehand to practice...we had a bit of motion on our scans because she couldn't get the timing down. and good luck!!
 
Sitting here waiting on Gab to get called back and thinking of you girls :)

Hope it's going well for you !
 
Thank you everyone! Its all over now. She had the three drinks and the IV just as you described Angie. The breath holding was long. She did really well though and they only needed to redo one of them. She also ran to the washroom before the scan started and then afterwards.. OMG. She was on the toilet and in tears for about 30 min with cramps. She is home now, resting on the couch watching TV. I'm glad its over. She's glad its over. She still feels a bit sick, I hope that passes soon.
Thank you everyone again for the positive wishes :) I will update on her results as soon as we know. I am assuming we will know at her appt on Jan 9.

Crohn's Mom, how did Gab do?
 
Oh Im soo glad she did good with the test !
Sorry about the cramps and nauseous :hug:
At least its over ! :)

Gab did good ~ we've been home bout 2 hours and she's napping before she has to make the 2 1/2 hour drive back to her apartment ~ she has exams tomorrow :(
It was a long day!
 
Happy to hear it went well, sorry to hear she had some cramping and now feels a bit sick, hope it resolves itself quickly!!
 
Sorry I am late to this hun but so fab to hear that all went well! YAY! And what a trooper, bless her. :hug:

Good luck with the results!

Dusty. xxx
 
Thank you everyone. I'm not sure if they will call us back with results sooner. She has her first appt in the IBD clinic Jan 9, thats why I am assuming we will hear something then. Her GI appt has been cancelled (by them) as we are now being switched to the IBD team. Which is fine with me, because I have not been happy with her GI and esp the GI's nurse. I hope if they see something new, they will call us sooner. She is sleeping in today, her school has the day off. She was feeling much better last night, but had the darkest rings under her eyes. She usually gets like that when something is off. I'm sure once she wakes up, after a good nights sleep she will be feeling much better. We are going to go out for lunch today, so that will make her happy :)
 
Hoping she is feeling better today, and wishing they call you with the results sooner...a month is a long time to wait!!!
 
Glad it is over and done with and she is now feeling better. Hope the IBD clinic works out better than the GI one!
 
Stephen was just transferred out of the same hospital... hmmm, I didn't know you could be diagnosed with crohns and not be part of the IBD clinic??? Doesn't make sense?!?!? I know the hospital has a fantastic reputation, etc. but I had a few issues that made me really wonder sometimes! :ybatty: Anyway, good luck with the transfer to IBD! Stephen's doctor was Dr. Walters... very nice guy and Stephen really liked him. I always emailed the nurse and asked her for the results (and she was almost always very good with responding quickly). She didn't send a copy of the actual results but would give her interpretation (which be careful of - one of my issues with them!! Don't accept a generic answer like 'oh, just a little bit of inflammation') but you can get the copies of the results from patient services. PM me if you need more info...

:ghug:
 
Thank you Tess,
I thought we were part of the IBD team too. Apparently its in the same clinic. We are seeing Dr.Johnstone. I will let you know what we think after her appt in Jan. We usually have my family dr request the results and then he copies them for me. The hosp told me they charge for the results. All I know is we are VERY happy to be transferred and not have to deal with the dr or her nurse any more. :)
 
They told me they charge as well but... when I requested ALL of Stephen's records (over a year's worth when he transferred), they didn't charge me??? Even after I gave them my visa, etc, they came back and just said 'no problem, we won't charge'??? Have no idea why?? :lol: But, I got the impression the 'no charge' was fairly common... IDK??? :D
 
Oh yeah? I called to request when Devynn first started there. They told me some crazy amount (Im thinking over $300). I asked if there was any way to avoid the cost and they told me to have my family dr request the results.
 
Strange??? I even requested records twice (from diagnosis to May 2012 and then from May 2012 to July 2012/transfer) and the same thing (no charge) happened both times (which is why I assumed it was fairly common??).

This was all arranged through the Patient Services, not the nurses... did you go through the nurses?
 
Hmmm???? Well, all I can say is that they didn't tell me there would be no charge until they called to say that it was ready to be picked up... initially, they had requested my visa number, etc. Very odd... Oh well, good luck with your new doctor!
 
Ahh ok. Maybe if I would have given them the go ahead I wouldn't have been charged.
Thank you :) We are looking forward to meeting with her.
 

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