Re: Big sis update!

[Guest guest]

MRI's are relatively simple to do on children but do require anesthesia for kids because they have to be still for clear photos. After anesthesia is given they are wrapped in blankets and put on a table that slides into a doughnut looking machine. It makes lots of strange loud noises and usually takes in between 45 minutes to 1 hour. Depending on the MRI place, results can be given within a couple of hours to a couple of weeks. We have received them at Mayo within a couple hours before. It also depends on how busy the neuro-radiologists are that day and how busy your doctor is. EEG's Asenath has had a couple of these. The actual procedure isn't bad, but setting up for it can really be scary for little guys. What happens is the technician glues probes throughout the hair and some on the face and they use a blow dryer (cool setting) to dry it quicker. Then they wrap the head in some type of wrapping to keep it in place so the kids can't pull them off. Then they hook the probes to a machine. There is usually long lead wires so the kids can get up and play. We have done the 24 hour video taped EEG's for Asenath. They aren't bad after you get through the hooking up part. Hopefully your child will be one of those kids that don't mind their head being played with. Sometimes it helps to have a video to watch while they are hooking them up.. That helps Asenath. Darla: mommy to the 9 munchkins Big sis update! I took today for a neurology appt today, and got more help than I could have imagined. I told everybody last week of my concerns with my oldest daughter, . She has been having horrible headaches and tremors. Her energy level has also been a little low lately. Well, anyway her ped referred her to a neurologist at CCF who specializes in headaches. Too my luck he is at the same desk as Dr. Cohen, Gracies mito doc. The residents came in first to ask all there preliminary stuff and then heard of her sisters diagnosis. At that point they decided that needed to see Cohen, not the DR she was scheduled for. At first I was worried, because anyone who goes to Cohen knows how his schedule is. After about 5 min in the room after the residents left, guess who walks in Dr. Cohen. I was so pleased, he took time from his schedule to see . She is far from critical, but still spent a good 1/2 hour with her. He thinks her problems are probably migraines, but is concerned with the energy issue. He decided to set her up with a mri of her brain and ran all the "typical" blood tests for mito. He even put in the labs for co enzyme Q10 levels and the carnitine levels, Grace is very deficient in both of these. I am praying that everything test out OK, but at least we will know. I even got to ask some pressing questions about Grace. We have been worried that she is having some small seizures, so he set her up for an EEG. He is only doing the 30 min one, and then maybe the 24 hour one later. How bad is the EEG? I know its not painful, but Grace is 19 months old and does not like people messing with her. Also, what is the mri like? They are sedating for the procedure, but how long does it take? How long for results? Dr. Cohen told me to call him the day after the MRI, so hopefully he will have results then. Sorry this is long, but just wanted to share. Please contact mito-owner with any problems or questions.

[Guest guest]

MRI's are relatively simple to do on children but do require anesthesia for kids because they have to be still for clear photos. After anesthesia is given they are wrapped in blankets and put on a table that slides into a doughnut looking machine. It makes lots of strange loud noises and usually takes in between 45 minutes to 1 hour. Depending on the MRI place, results can be given within a couple of hours to a couple of weeks. We have received them at Mayo within a couple hours before. It also depends on how busy the neuro-radiologists are that day and how busy your doctor is. EEG's Asenath has had a couple of these. The actual procedure isn't bad, but setting up for it can really be scary for little guys. What happens is the technician glues probes throughout the hair and some on the face and they use a blow dryer (cool setting) to dry it quicker. Then they wrap the head in some type of wrapping to keep it in place so the kids can't pull them off. Then they hook the probes to a machine. There is usually long lead wires so the kids can get up and play. We have done the 24 hour video taped EEG's for Asenath. They aren't bad after you get through the hooking up part. Hopefully your child will be one of those kids that don't mind their head being played with. Sometimes it helps to have a video to watch while they are hooking them up.. That helps Asenath. Darla: mommy to the 9 munchkins Big sis update! I took today for a neurology appt today, and got more help than I could have imagined. I told everybody last week of my concerns with my oldest daughter, . She has been having horrible headaches and tremors. Her energy level has also been a little low lately. Well, anyway her ped referred her to a neurologist at CCF who specializes in headaches. Too my luck he is at the same desk as Dr. Cohen, Gracies mito doc. The residents came in first to ask all there preliminary stuff and then heard of her sisters diagnosis. At that point they decided that needed to see Cohen, not the DR she was scheduled for. At first I was worried, because anyone who goes to Cohen knows how his schedule is. After about 5 min in the room after the residents left, guess who walks in Dr. Cohen. I was so pleased, he took time from his schedule to see . She is far from critical, but still spent a good 1/2 hour with her. He thinks her problems are probably migraines, but is concerned with the energy issue. He decided to set her up with a mri of her brain and ran all the "typical" blood tests for mito. He even put in the labs for co enzyme Q10 levels and the carnitine levels, Grace is very deficient in both of these. I am praying that everything test out OK, but at least we will know. I even got to ask some pressing questions about Grace. We have been worried that she is having some small seizures, so he set her up for an EEG. He is only doing the 30 min one, and then maybe the 24 hour one later. How bad is the EEG? I know its not painful, but Grace is 19 months old and does not like people messing with her. Also, what is the mri like? They are sedating for the procedure, but how long does it take? How long for results? Dr. Cohen told me to call him the day after the MRI, so hopefully he will have results then. Sorry this is long, but just wanted to share. Please contact mito-owner with any problems or questions.

[Guest guest]

MRI's are relatively simple to do on children but do require anesthesia for kids because they have to be still for clear photos. After anesthesia is given they are wrapped in blankets and put on a table that slides into a doughnut looking machine. It makes lots of strange loud noises and usually takes in between 45 minutes to 1 hour. Depending on the MRI place, results can be given within a couple of hours to a couple of weeks. We have received them at Mayo within a couple hours before. It also depends on how busy the neuro-radiologists are that day and how busy your doctor is. EEG's Asenath has had a couple of these. The actual procedure isn't bad, but setting up for it can really be scary for little guys. What happens is the technician glues probes throughout the hair and some on the face and they use a blow dryer (cool setting) to dry it quicker. Then they wrap the head in some type of wrapping to keep it in place so the kids can't pull them off. Then they hook the probes to a machine. There is usually long lead wires so the kids can get up and play. We have done the 24 hour video taped EEG's for Asenath. They aren't bad after you get through the hooking up part. Hopefully your child will be one of those kids that don't mind their head being played with. Sometimes it helps to have a video to watch while they are hooking them up.. That helps Asenath. Darla: mommy to the 9 munchkins Big sis update! I took today for a neurology appt today, and got more help than I could have imagined. I told everybody last week of my concerns with my oldest daughter, . She has been having horrible headaches and tremors. Her energy level has also been a little low lately. Well, anyway her ped referred her to a neurologist at CCF who specializes in headaches. Too my luck he is at the same desk as Dr. Cohen, Gracies mito doc. The residents came in first to ask all there preliminary stuff and then heard of her sisters diagnosis. At that point they decided that needed to see Cohen, not the DR she was scheduled for. At first I was worried, because anyone who goes to Cohen knows how his schedule is. After about 5 min in the room after the residents left, guess who walks in Dr. Cohen. I was so pleased, he took time from his schedule to see . She is far from critical, but still spent a good 1/2 hour with her. He thinks her problems are probably migraines, but is concerned with the energy issue. He decided to set her up with a mri of her brain and ran all the "typical" blood tests for mito. He even put in the labs for co enzyme Q10 levels and the carnitine levels, Grace is very deficient in both of these. I am praying that everything test out OK, but at least we will know. I even got to ask some pressing questions about Grace. We have been worried that she is having some small seizures, so he set her up for an EEG. He is only doing the 30 min one, and then maybe the 24 hour one later. How bad is the EEG? I know its not painful, but Grace is 19 months old and does not like people messing with her. Also, what is the mri like? They are sedating for the procedure, but how long does it take? How long for results? Dr. Cohen told me to call him the day after the MRI, so hopefully he will have results then. Sorry this is long, but just wanted to share. Please contact mito-owner with any problems or questions.

[Guest guest]

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Isn't Dr. Cohen just wonderful!? Hope 's results come back alright and that she doesn't have mito as well. I've had a MRI of the brain but wasn't sedated for it. It took about 45 mins.