Diaper Swappers

freckles2006 · 06-25-2012, 09:00 PM

I'm new to DS and this board keeps tempting me. One of my daughters will be turning 3 in August and we're in the process of scheduling an MRI of her brain under sedation. After getting the runaround for years a neurologist has told us that he believes she has mild cerebral palsy. I'm not worried about the diagnosis, but I am worried about the tests. It sounded like the MRI could possibly be a starting point, but maybe I was just waiting for the next thing when there isn't one?

Anyways, what I was wondering is if any of you have experienced a small child going through an MRI under anesthesia and could tell me how they handled it? Is it general anesthesia or a sedative? They said the center will call me with that information a few days before the MRI, but we're still waiting on insurance approval and it's bothering me. Also, if it was related to CP were there any other tests that she ran? I'm just trying to brace myself so I can be as strong as possible for her during all of this.

Thanks in advance, even if you only read this.

mamashhon · 06-25-2012, 09:29 PM

I don't have any advice, but I'll be following this! My 4yo has autism and a possible seizure disorder. He's had one EEG awake/asleep that showed abnormalities. He goes back to Arnold Palmer for a 2 day stay on July 9,10th for an MRI under sedation and a 24hr EEG. I'm incredibly nervous and can't wait to get all of this testing over with. I'll post about the MRI after we're back home. He just turned 4 in May so he's not much older.

mekat · 06-25-2012, 10:02 PM

My son has gone under several times once for a full body scan and several times after for spinal & brain MRI's. It isn't that big of a deal. They put an IV in and put the kid under, they usually wake up quickly though just wanted to warn you about that. Made the mistake of trying to piggy back an echocardiogram (my ds will not cooperate with most tests) and they couldn't get it done in time because the general anesthisia they give is a very low dose. They usually take the kiddo to an outpatient recovery room then you go home as soon as the nurse checks them out.

The only quirks I have run into is the anesthesiologist in our old hospital will not give enough to get two tests done at once (haven't tried to piggy back in the new hospital) and if your kiddo has bad veins placing the IV can be a huge hassle. If the nurse misses the IV placement more then twice insist she get someone else to try. If you know your kid has bad veins sometimes the nurse will take your word for it and call the experts in without trying. Our old hospital had a special IV team our new hospital has what they call swat nurses (I think that is what they called them, not as familiar with the new set up) with special training.

Bring something to read or do while you are waiting on them to finish the test. Your imagination in the hospital is your worst enemy so always have something to do.

If you're asking if the test is worth it I guess that all depends on what they suspect, type of CP, if they noticed any degenerative tendencies in your son's condition as well as how badly you need answers on a personal level etc....

luvsviola · 06-25-2012, 10:19 PM

If your kid has asthma...ask what their asthma plan is while kiddo is under. DS had complications from being under with his asthma (overnight stay turned into a week at the hospital).

jen_batten · 06-26-2012, 06:58 AM

Hugs for you. I know what you mean about the worrying. Two of my daughter's have had MRIs of the brain, one had a wierd lump on her head which turned out to be nothing and one has brain damage, but not CP, she has FCD. One daughter had one at 6 months and the other at 20 months. Just a warning...it's a lot harder on the Mama than it is on the little one. For us they weren't allowed to eat or drink anything for several hours before they started. They put an IV in, and put the child to sleep, or at least that's what they did with mine. The procedure varies in length, depending on what they are looking for. I think pretty typical length is about 45 minutes--an hour and a half. Have someone to talk to! Do not sit there alone and make yourself crazy. I don't know how you handle things, but it was very hard for me. I hated it, although I will say I handled it a lot better by the time it was daugher number two. I know someone suggested a book, and if you could focus on a book that would be just fine, but I couldn't, and I would recommend a person you can chat with, or maybe play a game while you wait. Usually when they bring you daugher back to you they will still be sleeping, and just as a warning both my girls looked kinda dry (probably from the no drinking rule) and pasty. The 6 month old woke up very quickly but was drowsy and had a hard time nursing and staying awake for several hours. You get to leave the hospital pretty quick after it's over (I think an hour?), but they have you watch for things like vomiting/dizziness/ect, and they call to check and see how they are doing to make sure there is no ill effects of the medication. My 18 month old had a hard time waking up. It took her a long time so that was kind of scary, but once she woke up she wasn't as drowsy and out of it, she seemed much more like herself. They thought with her that she may have CP, and after they found FCD they didn't have to do any more tests. I wouldn't think they would have to do more tests if they found out your daughter has CP, but they may want you to do some more if they don't learn anything from the MRI. The wondering, waiting and worrying is really by far the worst part. If you can keep you emtions in check remember that they do this test all the time and it's not that hard, just scary for the Mama. I hope that you get through it fantastically and that you get some answers for you little one soon!

freckles2006 · 06-26-2012, 08:03 AM

Thanks for the responses!

She doesn't have any breathing problems that we know of and they've only had trouble hitting her veins for the usual lead test once. We'll be going to Children's National so I'd assume they'd be even better at putting an IV in a toddler.

My husband is going to take the day off so we can go together and we may also take my SIL or an aunt along as well, just in case they start talking and we can't remember what they say. At this point they haven't mentioned doing any other tests at the same time, just the MRI for now. Our pediatrician feels confident that they'll find evidence of infant stroke, which is something I really don't want to think about. Dr. Google has me worrying about the repercussions of an infant stroke far more than CP.

Do they just do the IV for the MRI or is she going to have a breathing tube with the related sore throat and gunky feeling? She wouldn't need a breathing tube, right?

jen_batten · 06-26-2012, 08:13 AM

She shouldn't need a breathing tube unless she has trouble breathing while under sedation. If she starts having trouble breathing they will put in a tube. My girls didn't have to have one and I don't think that's super common.

Don't google anything! Talk to you Dr, and your therapists if she has any. But stay away from google, it will make you crazy. It sounds like you LO may be pretty similar to mine...they were thinking infant stroke and CP with her and were VERY surprised to find FCD. Can I be nosy and asks her symptoms and delays? You totally don't have to get into it if you don't want. But really as hard as it is, back away from google. I still googled after my DDs diagnoses, and it is all horror stories and siezure stuff for FCD and partial brain removals on there, but she has never had a siezure (yet anyway, but her odds are 1 in 4, approx.) and her odds are basically 0 for having surgery. Know too that the toddler brain is very flexible and can work around areas of damage very well! Sometimes they say she will never be able to do XY and Z, but those toddlers prove them wrong. Best of luck to you and your girl!

freckles2006 · 06-26-2012, 08:19 AM

I don't mind sharing her problems. She has limited movement in her right arm and leg, her right foot is curved (not like a club foot, but her foot makes a ) shape towards the other when she stands on it), and that's pretty much it. We're going to have her vision checked just in case, but aside from not being able to crawl and not walking until just shy of 18 months she's been developmentally excellent.

freckles2006 · 06-26-2012, 08:21 AM

Oh, and they said it was a BIG indicator that she's always been left-handed. Always. She didn't use her right hand at all until she was older, she just carried that arm at a right angle. They kept saying she was guarding it? She'll straighten it more now, but she still keeps it that way most of the time.

JasmineMama · 06-26-2012, 08:22 AM

A specialist is pushing my son to have surgery and I just have been reading about the complications from anesthesia and risks learning disabilities. Here is one article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729550/

There is another study that was just done by the Mayo clinic that shows an increase in likelihood of ADHD with early exposure to anesthesia.

My son's surgery is not for a life threatening condition...BUT it is generally thought that the earlier the better. So, I am really torn (but that is a different topic).

To you and your family, I would just look at all the factors before being pushed into something by a doctor.

06-25-2012, 09:00 PM	#1
freckles2006 Registered Users Join Date: Mar 2012 Location: Maryland Posts: 38 Ratings: 3 Feedback: 100%	New Here - CP & MRI Questions I'm new to DS and this board keeps tempting me. One of my daughters will be turning 3 in August and we're in the process of scheduling an MRI of her brain under sedation. After getting the runaround for years a neurologist has told us that he believes she has mild cerebral palsy. I'm not worried about the diagnosis, but I am worried about the tests. It sounded like the MRI could possibly be a starting point, but maybe I was just waiting for the next thing when there isn't one? Anyways, what I was wondering is if any of you have experienced a small child going through an MRI under anesthesia and could tell me how they handled it? Is it general anesthesia or a sedative? They said the center will call me with that information a few days before the MRI, but we're still waiting on insurance approval and it's bothering me. Also, if it was related to CP were there any other tests that she ran? I'm just trying to brace myself so I can be as strong as possible for her during all of this. Thanks in advance, even if you only read this.

06-25-2012, 09:29 PM	#2
mamashhon Registered Users Formerly: m2bs11n5 Join Date: May 2008 Posts: 1,446 Ratings: 104 Feedback: 100%	I don't have any advice, but I'll be following this! My 4yo has autism and a possible seizure disorder. He's had one EEG awake/asleep that showed abnormalities. He goes back to Arnold Palmer for a 2 day stay on July 9,10th for an MRI under sedation and a 24hr EEG. I'm incredibly nervous and can't wait to get all of this testing over with. I'll post about the MRI after we're back home. He just turned 4 in May so he's not much older. __________________ Jesse- lactation counselor, doula, childbirth educator, & aspiring midwife. Mama to three amazing boys. DS1 (7), DS2 (4) & DS3, born at home in January 2012! www.babyrootsbirth.com Last edited by mamashhon; 06-25-2012 at 09:31 PM.

06-25-2012, 10:02 PM	#3
mekat Registered Users Join Date: Mar 2008 Posts: 1,546 Ratings: 2 Feedback: 100%	Re: New Here - CP & MRI Questions My son has gone under several times once for a full body scan and several times after for spinal & brain MRI's. It isn't that big of a deal. They put an IV in and put the kid under, they usually wake up quickly though just wanted to warn you about that. Made the mistake of trying to piggy back an echocardiogram (my ds will not cooperate with most tests) and they couldn't get it done in time because the general anesthisia they give is a very low dose. They usually take the kiddo to an outpatient recovery room then you go home as soon as the nurse checks them out. The only quirks I have run into is the anesthesiologist in our old hospital will not give enough to get two tests done at once (haven't tried to piggy back in the new hospital) and if your kiddo has bad veins placing the IV can be a huge hassle. If the nurse misses the IV placement more then twice insist she get someone else to try. If you know your kid has bad veins sometimes the nurse will take your word for it and call the experts in without trying. Our old hospital had a special IV team our new hospital has what they call swat nurses (I think that is what they called them, not as familiar with the new set up) with special training. Bring something to read or do while you are waiting on them to finish the test. Your imagination in the hospital is your worst enemy so always have something to do. If you're asking if the test is worth it I guess that all depends on what they suspect, type of CP, if they noticed any degenerative tendencies in your son's condition as well as how badly you need answers on a personal level etc.... Last edited by mekat; 06-25-2012 at 10:03 PM.

06-25-2012, 10:19 PM	#4
luvsviola Registered Users Join Date: Dec 2006 Location: Central Indiana Posts: 15,039 Ratings: 115 Feedback: 100% My Mood:	Re: New Here - CP & MRI Questions If your kid has asthma...ask what their asthma plan is while kiddo is under. DS had complications from being under with his asthma (overnight stay turned into a week at the hospital). __________________ Kristen Mommy to Abigail ~1/24/07 and Kendall~3/17/2011 and FINALLY adoptive mama to LEDGER~4/4/09!!!--G-J tube, asthma, oral aversion, reflux, SPD, drug exposure, and still searching for a diagnosis of the rest... Ask me about extended rear facing!

06-26-2012, 06:58 AM	#5
jen_batten Registered Users Join Date: Oct 2008 Location: Elk Creek, MO Posts: 2,840 Ratings: 13 Feedback: 100%	Re: New Here - CP & MRI Questions Hugs for you. I know what you mean about the worrying. Two of my daughter's have had MRIs of the brain, one had a wierd lump on her head which turned out to be nothing and one has brain damage, but not CP, she has FCD. One daughter had one at 6 months and the other at 20 months. Just a warning...it's a lot harder on the Mama than it is on the little one. For us they weren't allowed to eat or drink anything for several hours before they started. They put an IV in, and put the child to sleep, or at least that's what they did with mine. The procedure varies in length, depending on what they are looking for. I think pretty typical length is about 45 minutes--an hour and a half. Have someone to talk to! Do not sit there alone and make yourself crazy. I don't know how you handle things, but it was very hard for me. I hated it, although I will say I handled it a lot better by the time it was daugher number two. I know someone suggested a book, and if you could focus on a book that would be just fine, but I couldn't, and I would recommend a person you can chat with, or maybe play a game while you wait. Usually when they bring you daugher back to you they will still be sleeping, and just as a warning both my girls looked kinda dry (probably from the no drinking rule) and pasty. The 6 month old woke up very quickly but was drowsy and had a hard time nursing and staying awake for several hours. You get to leave the hospital pretty quick after it's over (I think an hour?), but they have you watch for things like vomiting/dizziness/ect, and they call to check and see how they are doing to make sure there is no ill effects of the medication. My 18 month old had a hard time waking up. It took her a long time so that was kind of scary, but once she woke up she wasn't as drowsy and out of it, she seemed much more like herself. They thought with her that she may have CP, and after they found FCD they didn't have to do any more tests. I wouldn't think they would have to do more tests if they found out your daughter has CP, but they may want you to do some more if they don't learn anything from the MRI. The wondering, waiting and worrying is really by far the worst part. If you can keep you emtions in check remember that they do this test all the time and it's not that hard, just scary for the Mama. I hope that you get through it fantastically and that you get some answers for you little one soon!