Hi does anyone here have experience with a chiari diagnosis in baby? Also, we're prepping for his first MRI and need advice with that procedure.
Yep! My son had his MRI at 12 months and surgery 2 weeks later. They sedated him for the MRI and he was just extremely grouchy when he woke up. It wasn’t general anesthesia when they did his they called it sedation. And having already been through 5 surgeries with my other boy as an infant it was definitely not the same. They warned me that most kids wake up grouchy from it.
Feel free to ask me questions he is now almost 9 years old and doing fantastic! He was a completely different baby after surgery! And started walking 2 weeks after surgery! To think we had a reverse walker on order for him before we found out it makes me realize how lucky we were to do the MRI and found the Chiari or he probably would have never walked!
My 5 yr. old granddaughter has had 3 MRI's ( one regular MRI and 2 Cine MRI's). She had a general anesthesia for all three and did just fine with each one. They will normally give liquid versed ( what they refer to as "happy juice" ). It makes the procedure far less frightening for them. I am a nurse in an outpatient surgery center, and if they do wake up grouchy, it is just because they do not understand what they are feeling when they arouse from anesthesia. At the Cleveland Clinic they let the babies and children wake up naturally, in their own time. They do not try to arouse them to wake quickly. With all three MRI's we even went out to eat after them and my granddaughter was as happy as could be.
Thanks for your input! In terms of prep before, how long can they not eat at all? He snacks all night and is a terrible sleeper.
Hi Christina, my son was born with a Chiari Malformation w/Syrinx. We didn't find out until he was 14mos old. I knew something was wrong right from the start. He was a projectile puker. He screamed and cried 24/7. His pediatrician tried to tell me it was colic, I knew it wasn't but didn't know it was due to Chiari. I noticed little things like he was tired all the time, would only eat really soft foods, at 7 mos old he couldn't turn his neck when he sat up, he looked like he had a headache all the time, would move his fingers and toes oddly (he was experiencing tingling), he couldn't walk without falling over or run. He had very low muscle strength and would stop and rest a lot. Sitting in a car seat was excruciating for him. I could tell something was wrong and that he was in pain but couldn't figure out why. I finally demanded an MRI be done and that's when he was diagnosed. The MRI was such a scary thing for him because he didn't understand why I wouldn't let him have anything to eat or drink and why doctors were taking him away. Now he's 3yrs old, still doesn't like it but it is easier.
How old is your son?
Christina, I agree that Dr. Trumble would be great to contact. He is the Dr. that diagnosed my son in Florida.
http://www.neurosurgeons4kids.com/
this was my neurosurgeon and he works on kids his website has information about chirai. He is a great doctor if you have a chance to see him I would try. If not call his office and see if he knows anyone in your area that's a great doctor for kids. I know I was born with chirai but did not have any problems until I was an adult. Maybe your little one will not have any problems and it will not be a big deal when you go to the doc. Dr Trumble is one of only 100 doctors in the US to be able to work on kids and adults. He likes working on Chiari cases. He might just look at your MRI's.
Dr. Trumble is wonderful I will say he saved my life, if it was not for him I might be dead or even in a chair now.
Whipvine84 said:
http://www.neurosurgeons4kids.com/
this was my neurosurgeon and he works on kids his website has information about chirai. He is a great doctor if you have a chance to see him I would try. If not call his office and see if he knows anyone in your area that's a great doctor for kids. I know I was born with chirai but did not have any problems until I was an adult. Maybe your little one will not have any problems and it will not be a big deal when you go to the doc. Dr Trumble is one of only 100 doctors in the US to be able to work on kids and adults. He likes working on Chiari cases. He might just look at your MRI's.
He's the best in the world. I still wish I could go back to him but I guess I am all better in his eyes. I am trying to get in to a neurologist I think I have a Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry).
Thanks, ladies. We live close to Duke. Hope the neurosurgeons there are good too. I will def. consult with him too!
Hi - my son was 6 when he was diagnosed, but it was a congenital situation. I wish we discovered it sooner. What you want to know is how will they sedate your baby for the MRI, which drugs used, etc. will they do a brain and spine scan or just brain scan. Ask them to look for scoliosis and syringomyelia if they do the spinal scan, which they should do to rule that out.
One other thing is the prep for the MRI - fasting. It was tough, but we got through it. My husband and I fasted with my son to show support - of course as soon as he was under I went to lunch and chowed! :) I got my son lunch and he ate right away after we were discharged from hospital. I realize it is different with your baby, but it helps to know that we've been through it as moms. My story is very long and complicated but know you do get through it. The MRIs are a piece of cake (we've had 4 in one year) now (be prepared for follow-up MRIs), and really more a nuisance than anything because of the fasting and missing school. We now don't need another MRI for a year or 2. Yeah! Good luck and hang in there. It is good that you found this sooner versus later - trust me. I wish we knew when my son was a baby.
Ask to get the first available appointment if possible - be persistent and push for this if you can. It makes a HUGE difference when the kids are fasting which is usually from midnight on. The hospital will call you and go over the schedule and details to prepare in a screening call or something similar.
Cristina said:
Thanks for your input! In terms of prep before, how long can they not eat at all? He snacks all night and is a terrible sleeper.
MommaJam said:
Ask to get the first available appointment if possible - be persistent and push for this if you can. It makes a HUGE difference when the kids are fasting which is usually from midnight on. The hospital will call you and go over the schedule and details to prepare in a screening call or something similar. The last 2 MRIs we got later appointments AND the department was backed up so we didn't get in until 3 p.m.! Hopefully, they do babies first thing in the morning with the diabetic kids and ER kids. Ask about this so you know what to expect.
Cristina said:Thanks for your input! In terms of prep before, how long can they not eat at all? He snacks all night and is a terrible sleeper.
Fasting prior to an MRI depends on the time is it scheduled and the hospital's criteria. If it is scheduled in the morning, fasting after midnight is the standard time period. After noon, often they will let them have clear liquids up to 8 hours before the scheduled procedure. They will let you know on the pre-op call. And most facilities like to do infants the earliest possible. Good like. All will go well.