Dan:
Paul is right. There is someone looking out for all of you out there, big man. Lean on Him, bro...and you know you can lean on us. Best of luck, and know that I'll be on my knees this night for your girl...
OT: I can't sleep...I'm frightened
Moderators: Bill_Abner, ScoopBrady
Dan- I know this is a high anxiety time but try not to get too far ahead here. You may/may not know I am both a pediatrician and an internist with some familiarity with this condition. I see people every day with cafe au lait spots who do not have neurofibromatosis. The head bobbing does sound seizure like but at this age sterotyped behaviors are common in babies and may not be seizures. I think the videotaping is a good idea.
We'll certainly keep our fingers crossed/keep you in our thoughts.
If I may-let me caution you about reading too much info on the internet. It puts thoughts in your head they may not be valid. Heck in medical school we all do that every time we learn about a new disease. I gave myself amyotrophic lateral sclerosis and pheochromocytoma just by reading about these in my studies.
Keep your thoughts positive. Write down questions for the neurologist and see what he has to say and then go from there.
Tony
We'll certainly keep our fingers crossed/keep you in our thoughts.
If I may-let me caution you about reading too much info on the internet. It puts thoughts in your head they may not be valid. Heck in medical school we all do that every time we learn about a new disease. I gave myself amyotrophic lateral sclerosis and pheochromocytoma just by reading about these in my studies.
Keep your thoughts positive. Write down questions for the neurologist and see what he has to say and then go from there.
Tony
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sportdan30
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Guys,
Thank you all for your support and prayers. It means more than you know. I will without a doubt update everyone tomorrow evening. Her appointment is at 1:45 pm, and unfortunately she's fighting a bad runny nose/cold. It shouldn't keep us from going but the poor girl hasn't slept at all today. She's still up, so I'm really hoping she gets a good night's rest so that she's not out of it completely when we see the doctor. Like the majority of 1 year olds, she freaks out when someone else touches her.
Jared and Mutts,
Thank you for the additional information. It is greatly appreciated and has eased my mind a bit. I'm normally the optimist and the wife is the pessimist. It seems today the roles are reversed. My wife has convinced herself that these aren't seizures and that there's nothing wrong with her. She's also said she hasn't seen her have an episode, but she clearly had one when we were at the mall today. That however was the only one I saw, so it's better than yesterday and a couple days ago. I'm trying to stay positive, but I also don't want to be completely caught off guard if it is something bad.
Will check back in tomorrow. To borrow from Pk, take care.
Dan
Thank you all for your support and prayers. It means more than you know. I will without a doubt update everyone tomorrow evening. Her appointment is at 1:45 pm, and unfortunately she's fighting a bad runny nose/cold. It shouldn't keep us from going but the poor girl hasn't slept at all today. She's still up, so I'm really hoping she gets a good night's rest so that she's not out of it completely when we see the doctor. Like the majority of 1 year olds, she freaks out when someone else touches her.
Jared and Mutts,
Thank you for the additional information. It is greatly appreciated and has eased my mind a bit. I'm normally the optimist and the wife is the pessimist. It seems today the roles are reversed. My wife has convinced herself that these aren't seizures and that there's nothing wrong with her. She's also said she hasn't seen her have an episode, but she clearly had one when we were at the mall today. That however was the only one I saw, so it's better than yesterday and a couple days ago. I'm trying to stay positive, but I also don't want to be completely caught off guard if it is something bad.
Will check back in tomorrow. To borrow from Pk, take care.
Dan
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matthewk
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Sorry I haven't gotten to replying yet. We had our own (minor) kid crisis over the weekend.
I know exactly what you are going through. When we went in for our first ultrasound for our first child, they said that he may be born with a cleft lip and pallette. We were stunned. We asked all sorts of questions, but from only got so many answers. I swear doctors do not want to sound very optimistic at the time for fear of getting parents hopes up. Either that, or we were in such shock that all we heard were the dangers. Things like; he could have brain damage to go with it or he'd have to have many surgeries and his speech may be impaired.
We also ran right to the internet for more info. The danger with this is that you will find what you are looking for. By that I mean if you go into it looking at worst case, you will find it on the 'net. You will also find the positives if you looking for that as well. Only take what you read on the 'net as a part of the whole picture.
Today, our son is 4 and you can't even tell he had a 19mm gap across his face when he was born. Doctors can do a lot today to minimize the negative affects of a lot of conditions. Don't worry too much. It could end up being a very treatable condition that won't affect her day to day life much at all. You'll drive yourself crazy trying to deduce what is wrong before actually letting the doctors find out exactly what is going on.
I know exactly what you are going through. When we went in for our first ultrasound for our first child, they said that he may be born with a cleft lip and pallette. We were stunned. We asked all sorts of questions, but from only got so many answers. I swear doctors do not want to sound very optimistic at the time for fear of getting parents hopes up. Either that, or we were in such shock that all we heard were the dangers. Things like; he could have brain damage to go with it or he'd have to have many surgeries and his speech may be impaired.
We also ran right to the internet for more info. The danger with this is that you will find what you are looking for. By that I mean if you go into it looking at worst case, you will find it on the 'net. You will also find the positives if you looking for that as well. Only take what you read on the 'net as a part of the whole picture.
Today, our son is 4 and you can't even tell he had a 19mm gap across his face when he was born. Doctors can do a lot today to minimize the negative affects of a lot of conditions. Don't worry too much. It could end up being a very treatable condition that won't affect her day to day life much at all. You'll drive yourself crazy trying to deduce what is wrong before actually letting the doctors find out exactly what is going on.
-Matt
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matthewk
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I don;t want to thread-jack, but I have my own little kid-tastrophy to get off my chest and I thought it better than starting another kid thread.
On Saturday morning I was watching the kids while the wife went shopping. Our 4yr old son was playing at the kitchen table. We have a bench on one side. It's movable, not built in. Well, Kaleigh, our 1yr old daughter decided to climb up with him. She is a climber, so I wasn't alarmed that she was up there. I was at the PC about 15 feet away, kids in sight with just a glace up from the monitor. I saw her stand up a couple of times (not a surprise) and told her to sit, which she did...temporarily. I remember thinking to myself, I'll just finish this up on the PC and then go play CandyLand (the game they were playing with at the table) with them.
The next time I looked up I saw Kaleight standing on the bench leaning over the back of it, bench already tipping over. Before I coud even get up out of my chair, the bench had tipped over. Both kids began crying right away. I was a bit surprised the bench even went over with Cameron on it, but it did. Cameron was fine other than being scared. Kaleigh on the other hand must have caught her head on the metal heating vent on the wall. She had a gash at her hairline. Scared the crap out of me like nothing else ever has (other than Cameron falling in the lake).
After 6 hours and trips to both the walk-in clinic and hospital, she ended up with 4 stitches. She has already forgotten about it and is acting fine. Still, I can't get over this feeling of guilt over what happened. I was right there. I feel bad for doing my own thing at the PC when I could have been over there. Had I been playing at the table with them, it never would have happened.
On Saturday morning I was watching the kids while the wife went shopping. Our 4yr old son was playing at the kitchen table. We have a bench on one side. It's movable, not built in. Well, Kaleigh, our 1yr old daughter decided to climb up with him. She is a climber, so I wasn't alarmed that she was up there. I was at the PC about 15 feet away, kids in sight with just a glace up from the monitor. I saw her stand up a couple of times (not a surprise) and told her to sit, which she did...temporarily. I remember thinking to myself, I'll just finish this up on the PC and then go play CandyLand (the game they were playing with at the table) with them.
The next time I looked up I saw Kaleight standing on the bench leaning over the back of it, bench already tipping over. Before I coud even get up out of my chair, the bench had tipped over. Both kids began crying right away. I was a bit surprised the bench even went over with Cameron on it, but it did. Cameron was fine other than being scared. Kaleigh on the other hand must have caught her head on the metal heating vent on the wall. She had a gash at her hairline. Scared the crap out of me like nothing else ever has (other than Cameron falling in the lake).
After 6 hours and trips to both the walk-in clinic and hospital, she ended up with 4 stitches. She has already forgotten about it and is acting fine. Still, I can't get over this feeling of guilt over what happened. I was right there. I feel bad for doing my own thing at the PC when I could have been over there. Had I been playing at the table with them, it never would have happened.
-Matt
Dan ...
As hard as it sounds, try to take MUTTS words to heart. Kids just work wierd sometimes and a lot of the time, it turns out to be nothing.
I have a 13-year-old daughter and an 8-year-old son. Both were referred to a neurologist when they were little to check out something wierd that was going on. Furthermore, my wife was convinced and I was half-convinced at one point that my daughter was on her way to Tourette's Syndrome because of what appeared to be excessive blinking and throat clearing that was appearently not under her control. This went on for a couple of years, but it eventually went away. My son was also referred to an internist for a major workup of hsi digestive system because he wasn't yet potty-trained at 3 1/2 years old. We spent a day in the hospital having his pipes cleaned out in the hopes that would help. Turned out he just wasn't ready yet. The magic day happened about a month before pre-school started in a rest stop in Wyoming on the way home from vacation .. talk about a bolt from the blue, and just in time too.
Point is ... it's hard not to worry. Every parent does. Just know that a) doctors are very careful these days about getting every little thing checked out (probably to protect against malpractice), and b) a lot of the times, kids just do wierd stuff and wierd things happen. Most of the time, it turns out to be nothing at all.
Still, we'll all pray for you.
As hard as it sounds, try to take MUTTS words to heart. Kids just work wierd sometimes and a lot of the time, it turns out to be nothing.
I have a 13-year-old daughter and an 8-year-old son. Both were referred to a neurologist when they were little to check out something wierd that was going on. Furthermore, my wife was convinced and I was half-convinced at one point that my daughter was on her way to Tourette's Syndrome because of what appeared to be excessive blinking and throat clearing that was appearently not under her control. This went on for a couple of years, but it eventually went away. My son was also referred to an internist for a major workup of hsi digestive system because he wasn't yet potty-trained at 3 1/2 years old. We spent a day in the hospital having his pipes cleaned out in the hopes that would help. Turned out he just wasn't ready yet. The magic day happened about a month before pre-school started in a rest stop in Wyoming on the way home from vacation .. talk about a bolt from the blue, and just in time too.
Point is ... it's hard not to worry. Every parent does. Just know that a) doctors are very careful these days about getting every little thing checked out (probably to protect against malpractice), and b) a lot of the times, kids just do wierd stuff and wierd things happen. Most of the time, it turns out to be nothing at all.
Still, we'll all pray for you.
Dear Lord, I just ran across this thread. Sad times for many parents here. Dan, I certainly hope things turn out OK with your daughter. If there is one thing in this world that I don't like seeing, it is sick children, or children with disabilities. I count my blessings everyday for having 2 healthy boys. I certainly hope for the best for your daughter and family. I'll be praying that everything turns out OK.
Matt,matthewk wrote:I don;t want to thread-jack, but I have my own little kid-tastrophy to get off my chest and I thought it better than starting another kid thread.
On Saturday morning I was watching the kids while the wife went shopping. Our 4yr old son was playing at the kitchen table. We have a bench on one side. It's movable, not built in. Well, Kaleigh, our 1yr old daughter decided to climb up with him. She is a climber, so I wasn't alarmed that she was up there. I was at the PC about 15 feet away, kids in sight with just a glace up from the monitor. I saw her stand up a couple of times (not a surprise) and told her to sit, which she did...temporarily. I remember thinking to myself, I'll just finish this up on the PC and then go play CandyLand (the game they were playing with at the table) with them.
The next time I looked up I saw Kaleight standing on the bench leaning over the back of it, bench already tipping over. Before I coud even get up out of my chair, the bench had tipped over. Both kids began crying right away. I was a bit surprised the bench even went over with Cameron on it, but it did. Cameron was fine other than being scared. Kaleigh on the other hand must have caught her head on the metal heating vent on the wall. She had a gash at her hairline. Scared the crap out of me like nothing else ever has (other than Cameron falling in the lake).
After 6 hours and trips to both the walk-in clinic and hospital, she ended up with 4 stitches. She has already forgotten about it and is acting fine. Still, I can't get over this feeling of guilt over what happened. I was right there. I feel bad for doing my own thing at the PC when I could have been over there. Had I been playing at the table with them, it never would have happened.
While there is no way to prevent beating yourself up about it, the fact of the matter is that we can't be everywhere all the time for our kids. Accidents and injuries will happen, it's just part of the process. There's a difference between constant negligence and the natural desire for any individual (parent or not) to "do their own thing" for a few minutes out of each day.
I often feel bad whenever I take a little too much time for me, but I try to remind myself that keeping myself 'whole', in a life where I constantly serve another master: Work, Wife, Child, Money, Time etc. is important to being sane and therefore a better Dad.
Glad everything is OK.
Sport73
"Can't we all just get along? I'll turn this car around RIGHT now!"
"Can't we all just get along? I'll turn this car around RIGHT now!"
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sportdan30
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Guys,
We got good news. Carly seems to be just fine according to the neurologist. He spent as much time as we needed and answered any and all questions. He tested her motor skills and was quite impressed with her development. He was a true professional and we both felt very comfortable with his assessment. He's still going to run a 30 minute EEG for our peace of mind, but said he would be very surprised if it came back with anything strange. He attributes what she is doing as mannerisms and nothing else. Eventually, she should grow out of it. We showed him the video that we took of her, and he still didn't seem all that concerned. Of course, there's always that slim chance that it may be something but we're not concerned at this time.
We're still going to keep our appointment with the Neurofibromatosis specialist, but the neurologist feels that she's doesn't have the disease. I guess she'd have to be showing more symptoms other than the cafe au lait spots at this juncture. Still, it took 5 months to get the appointment, and we'd still like more peace of mind.
All of this is very bittersweet. Perhaps you may be curious as to why I don't sound so excited about the good news. It's because my thoughts are with Rob and his family. Hopefully everyone else will direct their sympathy and thoughts their way as many of you have already done. Thank you again for all your support and positive thoughts.
We got good news. Carly seems to be just fine according to the neurologist. He spent as much time as we needed and answered any and all questions. He tested her motor skills and was quite impressed with her development. He was a true professional and we both felt very comfortable with his assessment. He's still going to run a 30 minute EEG for our peace of mind, but said he would be very surprised if it came back with anything strange. He attributes what she is doing as mannerisms and nothing else. Eventually, she should grow out of it. We showed him the video that we took of her, and he still didn't seem all that concerned. Of course, there's always that slim chance that it may be something but we're not concerned at this time.
We're still going to keep our appointment with the Neurofibromatosis specialist, but the neurologist feels that she's doesn't have the disease. I guess she'd have to be showing more symptoms other than the cafe au lait spots at this juncture. Still, it took 5 months to get the appointment, and we'd still like more peace of mind.
All of this is very bittersweet. Perhaps you may be curious as to why I don't sound so excited about the good news. It's because my thoughts are with Rob and his family. Hopefully everyone else will direct their sympathy and thoughts their way as many of you have already done. Thank you again for all your support and positive thoughts.
...Great News!!!
When I was 4 My mom took me along to the bakery...while she was goofing around with her friend who happened to be working the counter I wandered over to a flight of stairs that lead down to a basement...It was very dark ...I leaned over to get a better look and the next thing I remember I was in the hospital...I was fine( many might argue this) but My mom was totally freaked...sf_z wrote:MattK: Accidents happen to kids. They're well designed to handle them. I had a similar incident when I was 3 yr old. My mother opened a door, knocked me off the back porch into the garden. I hit my head on a rock and got a scalp wound that took six stitches to close. We laugh about it now and I can show my kids the spot where "grandma tried to kill me".
point is kids do fall and go boom...
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pk500
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Very good news, Dan. Really happy for you and your family.
Now hug her extra tight tonight because she's healthy and because it's what Rob asked us to do to all of our kids.
Take care,
PK
Now hug her extra tight tonight because she's healthy and because it's what Rob asked us to do to all of our kids.
Take care,
PK
"You know why I love boxers? I love them because they face fear. And they face it alone." - Nick Charles
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"First on the throttle, last on the brakes." - @MotoGP Twitter signature
XBL Gamertag: pk4425