As many of you know my 8 year old son Derek, was diagnosed with lyme in 2003...and last May he feel during a baseball game and I mentioned to his pedi that he was off balance and had fallen several times that week...

We weren't sure if it was yet another Lyme symptom or something unrelated, so as a precaution they did an MRI.

And they discovered that Derek had extra fluid in the back of his brain, which was causing pressure, which could be effecting his balance.

After many tests and many specialist, it was determined that it is probable that Derek has A "Mega Cisterna Magna"..which basically means that he was born with a larger than normal cavity in the back of his brain where the fluids could collect..

The specialist said that she has seen many children with this condition and most are just fine, but if the extra fluid continued to collect, it would build up pressure in the brain and he would need to have surgery to drain the excess fluid..

So in order to monitor his condition, he has to have a follow up MRI tomorrow.

Derek is very frightened of the MRI machine and was only able to stand about 15 minuets in the MRI in May.

I have talked to him about the test and explained what it is, how it works, and how he needs the test to get a picture of his brain..

I have explained all this, addressed his fears the best I can, but he is still so afraid. Last time he cried so hard, they had to stop the test several times and eventually ended the test as it was stressing him so badly and they couldn't get a picture as he was shaking so badly.

They have told him that he needs to try and lay still for the hour long MRI and that if he can't, they will have to send him to the Children's hospital and he will have to have it done there under anesthesia...

Talk about pressure..he is only 8 years old! I had all I could do to lay still for an hour when I had my MRI..

So I am looking for some advice as to ways I might be able to help him through this...(they won't medicate him with anything for the test as they would like him alert)..

I am bringing his favorite Alan Jackson CD with me and hope they will play it for him, as it's the loud noises the machine makes, that scare him so badly. And I am bringing his favorite stuffy that Lishka gave him and myself and my husband are allowed to be in the room with him...

And he is still so scared he can't sleep. He is trying to be so brave and hasn't cried, but when I said his prayer tonight he was shaking...

So if you have any tips on how to help him through this I would appreciate it and I would also appreciate some prayers for him as well...

I am hoping that the amount of fluid hasn't increased and that he won't need surgery..he has been so much and he is only 8...so please keep him in your thoughts and prayers tomorrow...

Thank you all and God Bless..

~LymeBrat
~Missy

For my MRI I did a mental visualization, audio-ization, and breathed in an out slowly.

Vis.: "I was a "fighter pilot" during WWI or WWWII, shooting at borrelia.

Audio: The rapid-fire sound of the MRI machine was "my machine gun."

This helped a lot.

At some point in time after the report of the MRI is done, I'd get a hold of ALL actual images, and keep them for future interpretation(s), for the express purpose of ensuring that they do not disappear.
Make sure the right name is on all images.

I'll keep little Derek in my prayers. My daughter who is also 8 had an MRI last fall when she was having excruciating headaches from lyme. Nicole did fine and sat really still which I prayed and prayed she would.

Is it possible to give him something that would make him relax? Believe me I'm not in to druging my child but maybe some Benadryl to help him relax.

I'm sure it's scary for Derek...to bad there MRI's take so long. We went to an MRI place that had a high speed one so it only took 45 minutes (thats still a long time when your 8).

Hang in there!

Is this one of the old machines or the new open MRI?..Open, MRI, as an option may be better..

if you explain this is the only way that it'll get done, they'll let you do this..and your contact with his feet will help him stay calm.

Things that have helped us:

We get MRI's in one of those mobile trailers if we can. Sounds weird, but they are "cozier."

When we go in the machine, we ask them to bring us out again, one or two times, to
give our brains the idea that we are not trapped.

We bring string and if my daughter is in the machine, then she holds one end and I hold the other. Often the technicians ahave a cord w/a bulb at the end that can be squeezed if you panic. But we didn't want to do that and end the test, so we just pull on the string to communicate.

We tell the tech.'s there is a fear problem and they communicate in headphones more. Lots of information about what was going on, like "Okay, now you'll hear some loud banggs for about a minute." How long each test was, how many left, halfway through, one more, etc.

The last time, I actually leaned into the machine and stroked or patted my daughter as much as possible. I could actually reach her hands.

Sometimes they have mirrors that can help, so that your child can see out or can see you while in the machine.

Overall, we found that NOT opening our eyes under any circumstances helped. The sight of the machine's ceiling just inches form our faces caused panic. I think our brains just react that way naturally.

We've never been in an open machine. Maybe that's the best solution of all!

Thanks for your support, advice and prayers!

I was unable to sleep last night as, I was trying to update Derek's medical journal for his appointment with the Pedi Neurosurgeon..

While going through my notes, I remembered that when he had to have the EKG, the doctor at the Children's hospital was talking to Derek about his love of Baseball and how he wanted to be a Green Beret when he grew up...

And that the doctor had told Derek that baseball players and Green Berets had to have this test sometimes, to make sure their hearts were healthy to join the team..

And it really helped Derek calm down..As he loves baseball and thinks Army guys are the best heroes in the world.

So this morning when Derek woke up crying about how scared he was to have the MRI, I told him that when his favorite Red Sox player was injured last season, he had to have an MRI...

And Derek's eyes lit up...he then asked all kinds of questions about which Sox players had an MRI and if the machine took pictures of other parts of the body.. And if Green Beret's ever had an MRI..

So I answered all his questions the best I could and he seemed a little less nervous. He said he doesn't want to have the test, but knows that he needs to have it done. So he is going to try and be brave like the Sox and the Green Berets...Phew!

His test isn't until 4:30 this afternoon..so he went to school this morning. I called his teacher and the school nurse, to let them know he is having the test today and that he is scared.

They are so great with him and both said he could call me if he needed to. It's nice living in a small community where the staff at school cares so much about each child..

So for now anyways it seems he is a little less nervous about the test, now I just have to work on my nerves! LOL!

I am trying to keep a very optimistic attitude.... but can't help feeling worried and a little scared.

Thanks again for all your posts and prayers!

my prayer today will be the comfort and peace that will be needed to get you both thru this....and also that he will not have to go thru any surgeries....

God bless and keep you and please inform us about the results.......you have a whole family here pulling for you both....

I insited on the Open Machine. I took 1mg of Ativan, put on those blinds they give you on an airplane to sleep, headphones with Quadrophenia cranked up, and it was over in no time. The had the googles to watch a DVD movie, but they weren't working. That might be a good call for calming children's amxiety.

JC and Julie send hugs to Derek for his MRI adventure.

I don't know if any of this helps but both kids have had cats and mris.

For JC, 6, anesthesia was the only option. Between his constant hyperactivity and panic it was the only way to go. Show him a medical facility or a white coat and he freaks out. He needs "chemical restraints" to get through everything.

His terror of the (IV) "pinch" involved in going under was far more short-lived than the looong procedure. I was not allowed to stay with him for the procedure because it was in an OR kind of room with full staff.

For Julie, 12, it was more perfunctory and I was able to stay in the room with her. She was awake and put her "all" into staying very calm and motionless. She tends to be very stoic about all the procedures she's been through.

I was also able to hold her feet and massage them very gently. The clicking is VERY loud so make sure those foam ear plugs are really in there.

I also made sure that her head/neck were in a truly comfortable position before they started so she could just relax and not "strain" to hold her head still.

She said that my being there holding her feet really helped relax her and made the time pass faster.

If Derek falls somewhere between these two options, I heartily recommend a tranquilizer beforehand. Is there something he responds to well or can you ask the dr? Anything to take the edge off, ya know? Valium?

Best wishes to the little fella and to momma today. I'll be thinking of you both.

Let us know how it goes, okay?

Thanks for the post..you said

"Vis.: "I was a "fighter pilot" during WWI or WWWII, shooting at borrelia.

Audio: The rapid-fire sound of the MRI machine was "my machine gun."

This helped a lot"

Mmmm..this might work Derek's Grampa was in the Army for 20 years and Derek wants to be a Green Beret, so I'll pass on your idea and maybe when the noise gets bad, he can pretend he is getting the bad guys... it might work! again!

Snowboarder

thanks for the post..sorry your daughter is sick with lyme as well..it's so hard watching your child be sick...

As for the medication, I made a mistake..I thought they wanted him alert and that was why they weren't going to medicate him...

but it's because when he was a year old, he had surgery to correct an umbilical hernia and he had a real hard time coming out of the anesthesia..

So as we have a small hospital,and we don't have a pedi anesthesiologist on staff, they don't want to give him anything..

If he can't get through it without being medicated, we'll have to go the Children's hospital at Dartmouth and do it there as they have a full time pedi anesteologist team.

I thought about Benadryl, he has to take it for bee stings. But sometimes it hypes him up, so I don't know if I should give it to him.

I did call the pedi on call, and she is going to call me at 1:30 and let me know if there is anything she can give him to help him relax...

SO in the meantime, I am crossing my fingers and praying he'll get through the test and that we get good news!

Thanks again,

Thanks for the post. I'm not sure what type of MRI it will be, as we are a small hospital and we share the unit with several other hospitals..it shows up in a trailer..

lla2

Thanks for the post..great minds think a like! I did ask to go in when he had the MRI in May and they let me..I rubbed his leg and held his feet, but he was still very scared.

My husband and I are both going in the room this time and I am hoping that now that he has had the test once before, this time around it won't be so hard.. Crossing my fingers! Thanks again.

Lyddie

We have a trailer unit as well at our hospital. It backs up to one of the doors and they wheel you right up into the trailer..Derek liked this part. lol!

Thanks for the ideas. I think I'll try the string if they'll let me. What a great idea.

I talked to the MRI Tech awhile ago and told him that Derek is afraid..he happens to be the same guy who did it back in May..

So I will ask him to communicate with Derek a little more, maybe this will help. And your right about the eyes, he kept opening them up last time and every time he did, his little body shook and he started crying ...

He cried so hard he broke some blood vessels around his eyes and his eyes were red and puffy for hours, and he was only in the machine for 15 mins! poor thing.

Thanks again for the great ideas!

~LymeBrat

Lymebrat,

Your son can close his eyes, focus on his breathing, inhaling slowly, and exhaling slowly, focusing on the tip of his nose.

When the MRI noise comes on, then he can go into visual and audio 'combat' mode; the machine I was in had a ratta, tat tat noise, similar to an automatic weapon; its intermitent, I believe. Been long time since I was in one. Was in a closed machine, in a van-like truck that pulled up to a hospital bay-door.

It really isn't that 'truamatic' or claustrbophobic; the latter can be overcome. I think that medical people play this up in the service of writing another prescription! 'Emotionally traumatize the patient by suggesting that this can be claustrophobic, as in 'Are you/ or loved one claustrophobic?" "Don't like enclosed spaces, for long periods of time?"

If possible, bring him to any hospital, and show him the machine.

Closed MRI'S may be more diagnostically accurate than open MRIs.

I'm so sorry Derek has to go through this, but your a super Mom he will get through it with you and your husband there.

I hate having an MRI the only thing that help me at all was closing my eyes and visualizing something nice..like sailing with my dad.

Hugsss and prayers to you all,
Beverly

He'll be fine. I hope all goes well tomorrow. Try the bribery - we ended up at Build a Bear when he got his knee drained with fluid last year (from lyme) - that set me back 80.00 but when I saw the tears in his eyes from the pain of the needle going in his leg, I wanted to die. You do anything just to take it away. I sympathize with you - Good luck - he'll be ok. It's hard to be strong when they're the victim. Have a few ring pops on hand and the staff are sympathetic when they see it's a little one.

Once again, good luck and God sees all.

Did Derek have the MRI? How did it go?

Thanks again for all the support,advice and prayers! Sorry I didn't post yesterday, I have some type of stomach bug...

I wanted to let you all know that Derek did have his MRI and was able to get through the entire hour!!!!!!

The pedi on call had me give him 50mg of Benadryl ( a little more than she'd normally recommend as he sometimes gets hyper after taking it) And he was already tired after being in school all day, so he was able to get through it with little trauma.

He did cry and start to leave the hospital, when the MRI Tech informed us that he had to have an injection of dye to do a contrast and non contrast MRI.

No one told us that he would have to have the injection, probably as they knew how he feared needles...

So Derek said " does that mean I have to have a shot?" and the tech said yes..

So Derek said, "No..nope, no one said anything about a shot" and he started to walk to the lobby!!!! LOL..he is definitely a little independent and in his opinion, they lied to him, so the deal was off.

So my hubby and I told him that we were already there, and that he needed the test, and needed the shot...he didn't want to, but he did it.

And of course they injected him with the dye in his arm, and as luck would have it, it didn't work. so they waited a few mins, and Derek ended up falling asleep and then they injected him in the other arm..it was smooth sailing for the rest of the test.

The Tech said that Derek did such a good job this time, that they were able to get much clearer pictures.

SO now we just have to wait for the neurologist or the neurosurgeon to call me with the results.

So we are once again, crossing our fingers and praying.

I'll let you know when I hear anything, and thanks again for being there for us, we appreciate it.

quote:

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Originally posted by lymebrat:

So Derek said, "No..nope, no one said anything about a shot" and he started to walk to the lobby!!!! LOL..he is definitely a little independent and in his opinion, they lied to him, so the deal was off.

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Forgive me for chuckling, but that is priceless! I don't blame him one bit!

I think it probably helped to have both parents there. Hats off to you both. I'm sure that was not easy to do.

Prayers going up for good results!