Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 I understand you turn it around at 12 months/or 20 pounds. About his neck control. They sell carseats which recline. They also sell padding for around the head. With the extra padding and it reclined he should be pretty comfortable. We love Gracies carseat, I believe it is Evenflow. The seat can recline pretty far back, for naps or whatever. All of the adjustments are in the front so you can do them with one hand and the child in the seat. The best part is that you can adjust the straps from the front also. They have these wheel things so you can tighten or loosen them. This has been a huge help with Grace, we can keep one side a little looser to keep her g tube more open. My only problem with a carseat like this is price. The one I have averages from $160-$200. I know it is expensive, but if you really think about it, this is your child's comfort and safety. Best of luck, and enjoy your little guy when he gets home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 The reason it is recommended to wait until 20 pounds and 12 months is that most typical children have the neck and torso support to hold the head in the event of an accident. Think of it like a very large bowling ball on a flower stem. In a car accident, the child's head is thrown forward at 60 miles per hour, then returns at the same speed. If the neck isn't strong enough to support this action, the childs neck with break. (Sorry about the graphics. That is how it was explained to me. I was horrified.) We only turned my little guy around to forward facing a couple of months ago. He will be 3 yo next month. Our car seat is an Alpha Omega by Cosco. A child can remain rear facing until they are 35 pounds and I can't remember the length but our little guy was quite comfortable. Plenty of leg room. If you don't feel your son has the neck and torso strength to turn around when he out grows standard car seats like Alpha Omega, you would then need to talk to your insurance company about purchasing a special needs car seat that has special accommodations for children that cannot fit standard seats and car seats... But that is down the road a bit. Bec ________________________________________________________________________ ________________________________________________________________________ Message: 23 Date: Tue, 17 Feb 2004 22:19:40 -0000 Subject: When do I turn around the car seat? My 17 month old son (Diagnosed with Leigh's disease)is finally nearing the 20 pound mark. He has had his (toddler size, convertible) car seat rear facing until now and does not really have any leg room left. He's about to come back home from a lenghty hospital stay. I am concerned that he should not be forward facing because he has so little neck strength. Has anyone else encountered this problem? I'm working with physio/occupational therapy to devise some kind of seat belt for his head, but I'm not sure it'll really do the trick. ________________________________________________________________________ ________________________________________________________________________ Message: 24 Date: Wed, 18 Feb 2004 07:01:58 -0000 Subject: New to the group and the diagnosis Hello, I have been reading everything that has been posted but have yet to post. I have two sons that have been diagnosised with probable Mito by muscle byopsy but don't have a specific type. We have been through four years of heck, but it sounds like everyone goes through this. We live in the Kansas City area and have only one doctor who really gives us any info about the Mito and really it is all overwhelming to us. I have so many questions I don't even know where to start to I will introduce my sons. Gavin age four- Mito, PDD, Asthma, history of epilepsy which started at 4 months and ended about 8 months ago and is nolonger on meds, dosn't sweat, low tone, temerature intolerance, small head(can't remember the long term) that is getting worse, developmental delays, processing and motorplanning problems, and he has weird fatigue and overall weakness with illness, weather changes, allergies, normal play, and emotional stress. Gavin looks pretty normal and seems like a healthy kid so we gat a lot of questions about his need for a wheelchair or why we put limitations on his playtime. He does seem to be responding a little to CoQ10. Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic gastroenteritis) EE&EC, Lung disease with episodes of oxygen hunger, was a floppy baby(didn't hold his head up till he was 5 months old, Autism (doing great with speech but still has big isusses with behaviors and social), Swallowing problems, Excessive sweating, temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 seizures, abnormal immune system(still going through testing), slight kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-corn- and who knows allergies. Gage has had over 26 hospital stays for feeding intolerance, asthma, common viruses or infection, FTT, and reasons that never got figured out, he also seems just fine to most he walks, talks, runs, but gets very sick and takes months to get over th common cold. Taking COQ10 and not seeing any results, but he has been sick for 3 months straight. So I guess I am looking for a good Mito doctor who can lead us in the right direction, answer questions, and not make me feel insane. We are tired of doctors and hospitals even after we got the diagnosis doctors still don't believe that is the answer they feel the kids are doing too well and that they would not make any improvements and that we would more then likely have seen regression. We are just so tired!! Thank you for taking the time to read this it sounds like everyone has their hands full! Crystal mommy to Gavin and Gage. ________________________________________________________________________ ________________________________________________________________________ Message: 25 Date: Wed, 18 Feb 2004 07:36:06 EST From: albregra@... Subject: Re: When do I turn around the car seat? I understand you turn it around at 12 months/or 20 pounds. About his neck control. They sell carseats which recline. They also sell padding for around the head. With the extra padding and it reclined he should be pretty comfortable. We love Gracies carseat, I believe it is Evenflow. The seat can recline pretty far back, for naps or whatever. All of the adjustments are in the front so you can do them with one hand and the child in the seat. The best part is that you can adjust the straps from the front also. They have these wheel things so you can tighten or loosen them. This has been a huge help with Grace, we can keep one side a little looser to keep her g tube more open. My only problem with a carseat like this is price. The one I have averages from $160-$200. I know it is expensive, but if you really think about it, this is your child's comfort and safety. Best of luck, and enjoy your little guy when he gets home. [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Please contact mito-owner with any problems or questions. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 The reason it is recommended to wait until 20 pounds and 12 months is that most typical children have the neck and torso support to hold the head in the event of an accident. Think of it like a very large bowling ball on a flower stem. In a car accident, the child's head is thrown forward at 60 miles per hour, then returns at the same speed. If the neck isn't strong enough to support this action, the childs neck with break. (Sorry about the graphics. That is how it was explained to me. I was horrified.) We only turned my little guy around to forward facing a couple of months ago. He will be 3 yo next month. Our car seat is an Alpha Omega by Cosco. A child can remain rear facing until they are 35 pounds and I can't remember the length but our little guy was quite comfortable. Plenty of leg room. If you don't feel your son has the neck and torso strength to turn around when he out grows standard car seats like Alpha Omega, you would then need to talk to your insurance company about purchasing a special needs car seat that has special accommodations for children that cannot fit standard seats and car seats... But that is down the road a bit. Bec ________________________________________________________________________ ________________________________________________________________________ Message: 23 Date: Tue, 17 Feb 2004 22:19:40 -0000 Subject: When do I turn around the car seat? My 17 month old son (Diagnosed with Leigh's disease)is finally nearing the 20 pound mark. He has had his (toddler size, convertible) car seat rear facing until now and does not really have any leg room left. He's about to come back home from a lenghty hospital stay. I am concerned that he should not be forward facing because he has so little neck strength. Has anyone else encountered this problem? I'm working with physio/occupational therapy to devise some kind of seat belt for his head, but I'm not sure it'll really do the trick. ________________________________________________________________________ ________________________________________________________________________ Message: 24 Date: Wed, 18 Feb 2004 07:01:58 -0000 Subject: New to the group and the diagnosis Hello, I have been reading everything that has been posted but have yet to post. I have two sons that have been diagnosised with probable Mito by muscle byopsy but don't have a specific type. We have been through four years of heck, but it sounds like everyone goes through this. We live in the Kansas City area and have only one doctor who really gives us any info about the Mito and really it is all overwhelming to us. I have so many questions I don't even know where to start to I will introduce my sons. Gavin age four- Mito, PDD, Asthma, history of epilepsy which started at 4 months and ended about 8 months ago and is nolonger on meds, dosn't sweat, low tone, temerature intolerance, small head(can't remember the long term) that is getting worse, developmental delays, processing and motorplanning problems, and he has weird fatigue and overall weakness with illness, weather changes, allergies, normal play, and emotional stress. Gavin looks pretty normal and seems like a healthy kid so we gat a lot of questions about his need for a wheelchair or why we put limitations on his playtime. He does seem to be responding a little to CoQ10. Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic gastroenteritis) EE&EC, Lung disease with episodes of oxygen hunger, was a floppy baby(didn't hold his head up till he was 5 months old, Autism (doing great with speech but still has big isusses with behaviors and social), Swallowing problems, Excessive sweating, temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 seizures, abnormal immune system(still going through testing), slight kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-corn- and who knows allergies. Gage has had over 26 hospital stays for feeding intolerance, asthma, common viruses or infection, FTT, and reasons that never got figured out, he also seems just fine to most he walks, talks, runs, but gets very sick and takes months to get over th common cold. Taking COQ10 and not seeing any results, but he has been sick for 3 months straight. So I guess I am looking for a good Mito doctor who can lead us in the right direction, answer questions, and not make me feel insane. We are tired of doctors and hospitals even after we got the diagnosis doctors still don't believe that is the answer they feel the kids are doing too well and that they would not make any improvements and that we would more then likely have seen regression. We are just so tired!! Thank you for taking the time to read this it sounds like everyone has their hands full! Crystal mommy to Gavin and Gage. ________________________________________________________________________ ________________________________________________________________________ Message: 25 Date: Wed, 18 Feb 2004 07:36:06 EST From: albregra@... Subject: Re: When do I turn around the car seat? I understand you turn it around at 12 months/or 20 pounds. About his neck control. They sell carseats which recline. They also sell padding for around the head. With the extra padding and it reclined he should be pretty comfortable. We love Gracies carseat, I believe it is Evenflow. The seat can recline pretty far back, for naps or whatever. All of the adjustments are in the front so you can do them with one hand and the child in the seat. The best part is that you can adjust the straps from the front also. They have these wheel things so you can tighten or loosen them. This has been a huge help with Grace, we can keep one side a little looser to keep her g tube more open. My only problem with a carseat like this is price. The one I have averages from $160-$200. I know it is expensive, but if you really think about it, this is your child's comfort and safety. Best of luck, and enjoy your little guy when he gets home. [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Please contact mito-owner with any problems or questions. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 The reason it is recommended to wait until 20 pounds and 12 months is that most typical children have the neck and torso support to hold the head in the event of an accident. Think of it like a very large bowling ball on a flower stem. In a car accident, the child's head is thrown forward at 60 miles per hour, then returns at the same speed. If the neck isn't strong enough to support this action, the childs neck with break. (Sorry about the graphics. That is how it was explained to me. I was horrified.) We only turned my little guy around to forward facing a couple of months ago. He will be 3 yo next month. Our car seat is an Alpha Omega by Cosco. A child can remain rear facing until they are 35 pounds and I can't remember the length but our little guy was quite comfortable. Plenty of leg room. If you don't feel your son has the neck and torso strength to turn around when he out grows standard car seats like Alpha Omega, you would then need to talk to your insurance company about purchasing a special needs car seat that has special accommodations for children that cannot fit standard seats and car seats... But that is down the road a bit. Bec ________________________________________________________________________ ________________________________________________________________________ Message: 23 Date: Tue, 17 Feb 2004 22:19:40 -0000 Subject: When do I turn around the car seat? My 17 month old son (Diagnosed with Leigh's disease)is finally nearing the 20 pound mark. He has had his (toddler size, convertible) car seat rear facing until now and does not really have any leg room left. He's about to come back home from a lenghty hospital stay. I am concerned that he should not be forward facing because he has so little neck strength. Has anyone else encountered this problem? I'm working with physio/occupational therapy to devise some kind of seat belt for his head, but I'm not sure it'll really do the trick. ________________________________________________________________________ ________________________________________________________________________ Message: 24 Date: Wed, 18 Feb 2004 07:01:58 -0000 Subject: New to the group and the diagnosis Hello, I have been reading everything that has been posted but have yet to post. I have two sons that have been diagnosised with probable Mito by muscle byopsy but don't have a specific type. We have been through four years of heck, but it sounds like everyone goes through this. We live in the Kansas City area and have only one doctor who really gives us any info about the Mito and really it is all overwhelming to us. I have so many questions I don't even know where to start to I will introduce my sons. Gavin age four- Mito, PDD, Asthma, history of epilepsy which started at 4 months and ended about 8 months ago and is nolonger on meds, dosn't sweat, low tone, temerature intolerance, small head(can't remember the long term) that is getting worse, developmental delays, processing and motorplanning problems, and he has weird fatigue and overall weakness with illness, weather changes, allergies, normal play, and emotional stress. Gavin looks pretty normal and seems like a healthy kid so we gat a lot of questions about his need for a wheelchair or why we put limitations on his playtime. He does seem to be responding a little to CoQ10. Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic gastroenteritis) EE&EC, Lung disease with episodes of oxygen hunger, was a floppy baby(didn't hold his head up till he was 5 months old, Autism (doing great with speech but still has big isusses with behaviors and social), Swallowing problems, Excessive sweating, temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 seizures, abnormal immune system(still going through testing), slight kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-corn- and who knows allergies. Gage has had over 26 hospital stays for feeding intolerance, asthma, common viruses or infection, FTT, and reasons that never got figured out, he also seems just fine to most he walks, talks, runs, but gets very sick and takes months to get over th common cold. Taking COQ10 and not seeing any results, but he has been sick for 3 months straight. So I guess I am looking for a good Mito doctor who can lead us in the right direction, answer questions, and not make me feel insane. We are tired of doctors and hospitals even after we got the diagnosis doctors still don't believe that is the answer they feel the kids are doing too well and that they would not make any improvements and that we would more then likely have seen regression. We are just so tired!! Thank you for taking the time to read this it sounds like everyone has their hands full! Crystal mommy to Gavin and Gage. ________________________________________________________________________ ________________________________________________________________________ Message: 25 Date: Wed, 18 Feb 2004 07:36:06 EST From: albregra@... Subject: Re: When do I turn around the car seat? I understand you turn it around at 12 months/or 20 pounds. About his neck control. They sell carseats which recline. They also sell padding for around the head. With the extra padding and it reclined he should be pretty comfortable. We love Gracies carseat, I believe it is Evenflow. The seat can recline pretty far back, for naps or whatever. All of the adjustments are in the front so you can do them with one hand and the child in the seat. The best part is that you can adjust the straps from the front also. They have these wheel things so you can tighten or loosen them. This has been a huge help with Grace, we can keep one side a little looser to keep her g tube more open. My only problem with a carseat like this is price. The one I have averages from $160-$200. I know it is expensive, but if you really think about it, this is your child's comfort and safety. Best of luck, and enjoy your little guy when he gets home. [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Please contact mito-owner with any problems or questions. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Thank you!The bowling ball/flower stem analogy is great. That is exactly why I felt I had to inquire about it. I feel better to know that I'm not the only one who has considered this dilema. My son also has the Alpha Omega. It is a very good car seat, but I'm not so sure about the leg room. Maybe it has something to do with the car we have it in. We also keep it reclined as far back as we can but it's jammed pretty tight between the front and rear seats. On a semi-unrelated topic: The Alpha Omega actually has a few bonus's on other car seats aside from being convertible from infant/toddler/booster, there is better lower back support/padding than any other car seat I've found. Most car seats have a very uncomfortable ledge in the lower back area. Alpha has it too, but it's lining firmly covers it. It is also the seat Tarok's Occupational Therapist reccommended. Thanks again for offering up your experience in this matter. > > The reason it is recommended to wait until 20 pounds and 12 months is that > most typical children have the neck and torso support to hold the head in > the event of an accident. > > Think of it like a very large bowling ball on a flower stem. In a car > accident, the child's head is thrown forward at 60 miles per hour, then > returns at the same speed. If the neck isn't strong enough to support this > action, the childs neck with break. (Sorry about the graphics. That is how > it was explained to me. I was horrified.) > > We only turned my little guy around to forward facing a couple of months > ago. He will be 3 yo next month. > > Our car seat is an Alpha Omega by Cosco. A child can remain rear facing > until they are 35 pounds and I can't remember the length but our little guy > was quite comfortable. Plenty of leg room. > > If you don't feel your son has the neck and torso strength to turn around > when he out grows standard car seats like Alpha Omega, you would then need > to talk to your insurance company about purchasing a special needs car seat > that has special accommodations for children that cannot fit standard seats > and car seats... But that is down the road a bit. > > Bec > ______________________________________________________________________ __ > ______________________________________________________________________ __ > > Message: 23 > Date: Tue, 17 Feb 2004 22:19:40 -0000 > From: " medea_moonstone " > Subject: When do I turn around the car seat? > > My 17 month old son (Diagnosed with Leigh's disease)is finally > nearing the 20 pound mark. He has had his (toddler size, convertible) > car seat rear facing until now and does not really have any leg room > left. He's about to come back home from a lenghty hospital stay. I am > concerned that he should not be forward facing because he has so > little neck strength. Has anyone else encountered this problem? I'm > working with physio/occupational therapy to devise some kind of seat > belt for his head, but I'm not sure it'll really do the trick. > > > > > ______________________________________________________________________ __ > ______________________________________________________________________ __ > > Message: 24 > Date: Wed, 18 Feb 2004 07:01:58 -0000 > From: " Crystal " > Subject: New to the group and the diagnosis > > Hello, I have been reading everything that has been posted but have > yet to post. I have two sons that have been diagnosised with > probable Mito by muscle byopsy but don't have a specific type. We > have been through four years of heck, but it sounds like everyone > goes through this. We live in the Kansas City area and have only one > doctor who really gives us any info about the Mito and really it is > all overwhelming to us. I have so many questions I don't even know > where to start to I will introduce my sons. > > Gavin age four- Mito, PDD, Asthma, history of epilepsy which started > at 4 months and ended about 8 months ago and is nolonger on meds, > dosn't sweat, low tone, temerature intolerance, small head(can't > remember the long term) that is getting worse, developmental delays, > processing and motorplanning problems, and he has weird fatigue and > overall weakness with illness, weather changes, allergies, normal > play, and emotional stress. Gavin looks pretty normal and seems like > a healthy kid so we gat a lot of questions about his need for a > wheelchair or why we put limitations on his playtime. He does seem > to be responding a little to CoQ10. > > Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic > gastroenteritis) EE&EC, Lung disease with episodes of oxygen hunger, > was a floppy baby(didn't hold his head up till he was 5 months old, > Autism (doing great with speech but still has big isusses with > behaviors and social), Swallowing problems, Excessive sweating, > temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 > seizures, abnormal immune system(still going through testing), slight > kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring- corn- > and who knows allergies. Gage has had over 26 hospital stays for > feeding intolerance, asthma, common viruses or infection, FTT, and > reasons that never got figured out, he also seems just fine to most > he walks, talks, runs, but gets very sick and takes months to get > over th common cold. Taking COQ10 and not seeing any results, but he > has been sick for 3 months straight. > > So I guess I am looking for a good Mito doctor who can lead us in the > right direction, answer questions, and not make me feel insane. We > are tired of doctors and hospitals even after we got the diagnosis > doctors still don't believe that is the answer they feel the kids are > doing too well and that they would not make any improvements and that > we would more then likely have seen regression. We are just so > tired!! Thank you for taking the time to read this it sounds like > everyone has their hands full! Crystal mommy to Gavin and Gage. > > > > > ______________________________________________________________________ __ > ______________________________________________________________________ __ > > Message: 25 > Date: Wed, 18 Feb 2004 07:36:06 EST > From: albregra@a... > Subject: Re: When do I turn around the car seat? > > I understand you turn it around at 12 months/or 20 pounds. About his neck > control. They sell carseats which recline. They also sell padding for > around > the head. With the extra padding and it reclined he should be pretty > comfortable. We love Gracies carseat, I believe it is Evenflow. The seat > can recline > pretty far back, for naps or whatever. All of the adjustments are in the > front > so you can do them with one hand and the child in the seat. The best part > is > that you can adjust the straps from the front also. They have these wheel > things so you can tighten or loosen them. This has been a huge help with > Grace, > we can keep one side a little looser to keep her g tube more open. My only > problem with a carseat like this is price. The one I have averages from > $160-$200. I know it is expensive, but if you really think about it, this > is your > child's comfort and safety. Best of luck, and enjoy your little guy when he > gets home. > > > > [This message contained attachments] > > > > ______________________________________________________________________ __ > ______________________________________________________________________ __ > > > Please contact mito-owner with any problems or questions. > -------------------------------------------------------------------- ---- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 There are special car seats for children with disabilities. They offer more support than an average child seat. I know our Easter Seals office here in Appleton, WI carries several types of seats. You are already working with some one so that is good. Supporting the neck for if and when you have to do those quick stops. I know of one car seat where the child lays down. But not sure if that would be good for you; especially if your child likes to look out the window and see things. We did a neck support for Leah for a bit when she couldn't hold up her head very well. Nerenhausen mom to Leah medea_moonstone wrote: > My 17 month old son (Diagnosed with Leigh's disease)is finally > nearing the 20 pound mark. He has had his (toddler size, convertible) > car seat rear facing until now and does not really have any leg room > left. He's about to come back home from a lenghty hospital stay. I am > concerned that he should not be forward facing because he has so > little neck strength. Has anyone else encountered this problem? I'm > working with physio/occupational therapy to devise some kind of seat > belt for his head, but I'm not sure it'll really do the trick. > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 There are special car seats for children with disabilities. They offer more support than an average child seat. I know our Easter Seals office here in Appleton, WI carries several types of seats. You are already working with some one so that is good. Supporting the neck for if and when you have to do those quick stops. I know of one car seat where the child lays down. But not sure if that would be good for you; especially if your child likes to look out the window and see things. We did a neck support for Leah for a bit when she couldn't hold up her head very well. Nerenhausen mom to Leah medea_moonstone wrote: > My 17 month old son (Diagnosed with Leigh's disease)is finally > nearing the 20 pound mark. He has had his (toddler size, convertible) > car seat rear facing until now and does not really have any leg room > left. He's about to come back home from a lenghty hospital stay. I am > concerned that he should not be forward facing because he has so > little neck strength. Has anyone else encountered this problem? I'm > working with physio/occupational therapy to devise some kind of seat > belt for his head, but I'm not sure it'll really do the trick. > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 There are special car seats for children with disabilities. They offer more support than an average child seat. I know our Easter Seals office here in Appleton, WI carries several types of seats. You are already working with some one so that is good. Supporting the neck for if and when you have to do those quick stops. I know of one car seat where the child lays down. But not sure if that would be good for you; especially if your child likes to look out the window and see things. We did a neck support for Leah for a bit when she couldn't hold up her head very well. Nerenhausen mom to Leah medea_moonstone wrote: > My 17 month old son (Diagnosed with Leigh's disease)is finally > nearing the 20 pound mark. He has had his (toddler size, convertible) > car seat rear facing until now and does not really have any leg room > left. He's about to come back home from a lenghty hospital stay. I am > concerned that he should not be forward facing because he has so > little neck strength. Has anyone else encountered this problem? I'm > working with physio/occupational therapy to devise some kind of seat > belt for his head, but I'm not sure it'll really do the trick. > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi We just got a new car seat for Leah. Easter Seals helped pay for it. We only had to contribute about $50 and they paid the rest. It was like around $200 for the seat. It is a car seat that reclines and it can hold a child up to I believe 80 lbs. It is from Britax and is called Marathon. We got it from our speciality baby store. It allows a child up to about 8 years of age to use this. The sales person showed me how high up my daughter needed to grown to be able to use this. I believe we'll be able to use this a long time since she is only 5 years old. Plus I liked the fabric on it and the five point harness system. It does sit up higher on the seat than our old car seat. So I need to boost her in to the seat. Getting good upper muscle strength. But it is a highly rated car seat for kids. Nerenhausen mom to Leah medea_moonstone wrote: > Thank you!The bowling ball/flower stem analogy is great. That is > exactly why I felt I had to inquire about it. I feel better to know > that I'm not the only one who has considered this dilema. My son also > has the Alpha Omega. It is a very good car seat, but I'm not so sure > about the leg room. Maybe it has something to do with the car we have > it in. We also keep it reclined as far back as we can but it's jammed > pretty tight between the front and rear seats. > On a semi-unrelated topic: The Alpha Omega actually has a few bonus's > on other car seats aside from being convertible from > infant/toddler/booster, there is better lower back support/padding > than any other car seat I've found. Most car seats have a very > uncomfortable ledge in the lower back area. Alpha has it too, but > it's lining firmly covers it. It is also the seat Tarok's > Occupational Therapist reccommended. > > Thanks again for offering up your experience in this matter. > > > > > The reason it is recommended to wait until 20 pounds and 12 months > is that > > most typical children have the neck and torso support to hold the > head in > > the event of an accident. > > > > Think of it like a very large bowling ball on a flower stem. In a > car > > accident, the child's head is thrown forward at 60 miles per hour, > then > > returns at the same speed. If the neck isn't strong enough to > support this > > action, the childs neck with break. (Sorry about the graphics. > That is how > > it was explained to me. I was horrified.) > > > > We only turned my little guy around to forward facing a couple of > months > > ago. He will be 3 yo next month. > > > > Our car seat is an Alpha Omega by Cosco. A child can remain rear > facing > > until they are 35 pounds and I can't remember the length but our > little guy > > was quite comfortable. Plenty of leg room. > > > > If you don't feel your son has the neck and torso strength to turn > around > > when he out grows standard car seats like Alpha Omega, you would > then need > > to talk to your insurance company about purchasing a special needs > car seat > > that has special accommodations for children that cannot fit > standard seats > > and car seats... But that is down the road a bit. > > > > Bec > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 23 > > Date: Tue, 17 Feb 2004 22:19:40 -0000 > > From: " medea_moonstone " > > Subject: When do I turn around the car seat? > > > > My 17 month old son (Diagnosed with Leigh's disease)is finally > > nearing the 20 pound mark. He has had his (toddler size, > convertible) > > car seat rear facing until now and does not really have any leg > room > > left. He's about to come back home from a lenghty hospital stay. I > am > > concerned that he should not be forward facing because he has so > > little neck strength. Has anyone else encountered this problem? I'm > > working with physio/occupational therapy to devise some kind of > seat > > belt for his head, but I'm not sure it'll really do the trick. > > > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 24 > > Date: Wed, 18 Feb 2004 07:01:58 -0000 > > From: " Crystal " > > Subject: New to the group and the diagnosis > > > > Hello, I have been reading everything that has been posted but > have > > yet to post. I have two sons that have been diagnosised with > > probable Mito by muscle byopsy but don't have a specific type. We > > have been through four years of heck, but it sounds like everyone > > goes through this. We live in the Kansas City area and have only > one > > doctor who really gives us any info about the Mito and really it is > > all overwhelming to us. I have so many questions I don't even know > > where to start to I will introduce my sons. > > > > Gavin age four- Mito, PDD, Asthma, history of epilepsy which > started > > at 4 months and ended about 8 months ago and is nolonger on meds, > > dosn't sweat, low tone, temerature intolerance, small head(can't > > remember the long term) that is getting worse, developmental > delays, > > processing and motorplanning problems, and he has weird fatigue and > > overall weakness with illness, weather changes, allergies, normal > > play, and emotional stress. Gavin looks pretty normal and seems > like > > a healthy kid so we gat a lot of questions about his need for a > > wheelchair or why we put limitations on his playtime. He does seem > > to be responding a little to CoQ10. > > > > Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic > > gastroenteritis) EE&EC, Lung disease with episodes of oxygen > hunger, > > was a floppy baby(didn't hold his head up till he was 5 months old, > > Autism (doing great with speech but still has big isusses with > > behaviors and social), Swallowing problems, Excessive sweating, > > temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 > > seizures, abnormal immune system(still going through testing), > slight > > kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring- > corn- > > and who knows allergies. Gage has had over 26 hospital stays for > > feeding intolerance, asthma, common viruses or infection, FTT, and > > reasons that never got figured out, he also seems just fine to most > > he walks, talks, runs, but gets very sick and takes months to get > > over th common cold. Taking COQ10 and not seeing any results, but > he > > has been sick for 3 months straight. > > > > So I guess I am looking for a good Mito doctor who can lead us in > the > > right direction, answer questions, and not make me feel insane. We > > are tired of doctors and hospitals even after we got the diagnosis > > doctors still don't believe that is the answer they feel the kids > are > > doing too well and that they would not make any improvements and > that > > we would more then likely have seen regression. We are just so > > tired!! Thank you for taking the time to read this it sounds like > > everyone has their hands full! Crystal mommy to Gavin and Gage. > > > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 25 > > Date: Wed, 18 Feb 2004 07:36:06 EST > > From: albregra@a... > > Subject: Re: When do I turn around the car seat? > > > > I understand you turn it around at 12 months/or 20 pounds. About > his neck > > control. They sell carseats which recline. They also sell padding > for > > around > > the head. With the extra padding and it reclined he should be > pretty > > comfortable. We love Gracies carseat, I believe it is Evenflow. > The seat > > can recline > > pretty far back, for naps or whatever. All of the adjustments are > in the > > front > > so you can do them with one hand and the child in the seat. The > best part > > is > > that you can adjust the straps from the front also. They have > these wheel > > things so you can tighten or loosen them. This has been a huge > help with > > Grace, > > we can keep one side a little looser to keep her g tube more open. > My only > > problem with a carseat like this is price. The one I have averages > from > > $160-$200. I know it is expensive, but if you really think about > it, this > > is your > > child's comfort and safety. Best of luck, and enjoy your little guy > when he > > gets home. > > > > > > > > [This message contained attachments] > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > > > Please contact mito-owner with any problems or > questions. > > -------------------------------------------------------------------- > ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi We just got a new car seat for Leah. Easter Seals helped pay for it. We only had to contribute about $50 and they paid the rest. It was like around $200 for the seat. It is a car seat that reclines and it can hold a child up to I believe 80 lbs. It is from Britax and is called Marathon. We got it from our speciality baby store. It allows a child up to about 8 years of age to use this. The sales person showed me how high up my daughter needed to grown to be able to use this. I believe we'll be able to use this a long time since she is only 5 years old. Plus I liked the fabric on it and the five point harness system. It does sit up higher on the seat than our old car seat. So I need to boost her in to the seat. Getting good upper muscle strength. But it is a highly rated car seat for kids. Nerenhausen mom to Leah medea_moonstone wrote: > Thank you!The bowling ball/flower stem analogy is great. That is > exactly why I felt I had to inquire about it. I feel better to know > that I'm not the only one who has considered this dilema. My son also > has the Alpha Omega. It is a very good car seat, but I'm not so sure > about the leg room. Maybe it has something to do with the car we have > it in. We also keep it reclined as far back as we can but it's jammed > pretty tight between the front and rear seats. > On a semi-unrelated topic: The Alpha Omega actually has a few bonus's > on other car seats aside from being convertible from > infant/toddler/booster, there is better lower back support/padding > than any other car seat I've found. Most car seats have a very > uncomfortable ledge in the lower back area. Alpha has it too, but > it's lining firmly covers it. It is also the seat Tarok's > Occupational Therapist reccommended. > > Thanks again for offering up your experience in this matter. > > > > > The reason it is recommended to wait until 20 pounds and 12 months > is that > > most typical children have the neck and torso support to hold the > head in > > the event of an accident. > > > > Think of it like a very large bowling ball on a flower stem. In a > car > > accident, the child's head is thrown forward at 60 miles per hour, > then > > returns at the same speed. If the neck isn't strong enough to > support this > > action, the childs neck with break. (Sorry about the graphics. > That is how > > it was explained to me. I was horrified.) > > > > We only turned my little guy around to forward facing a couple of > months > > ago. He will be 3 yo next month. > > > > Our car seat is an Alpha Omega by Cosco. A child can remain rear > facing > > until they are 35 pounds and I can't remember the length but our > little guy > > was quite comfortable. Plenty of leg room. > > > > If you don't feel your son has the neck and torso strength to turn > around > > when he out grows standard car seats like Alpha Omega, you would > then need > > to talk to your insurance company about purchasing a special needs > car seat > > that has special accommodations for children that cannot fit > standard seats > > and car seats... But that is down the road a bit. > > > > Bec > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 23 > > Date: Tue, 17 Feb 2004 22:19:40 -0000 > > From: " medea_moonstone " > > Subject: When do I turn around the car seat? > > > > My 17 month old son (Diagnosed with Leigh's disease)is finally > > nearing the 20 pound mark. He has had his (toddler size, > convertible) > > car seat rear facing until now and does not really have any leg > room > > left. He's about to come back home from a lenghty hospital stay. I > am > > concerned that he should not be forward facing because he has so > > little neck strength. Has anyone else encountered this problem? I'm > > working with physio/occupational therapy to devise some kind of > seat > > belt for his head, but I'm not sure it'll really do the trick. > > > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 24 > > Date: Wed, 18 Feb 2004 07:01:58 -0000 > > From: " Crystal " > > Subject: New to the group and the diagnosis > > > > Hello, I have been reading everything that has been posted but > have > > yet to post. I have two sons that have been diagnosised with > > probable Mito by muscle byopsy but don't have a specific type. We > > have been through four years of heck, but it sounds like everyone > > goes through this. We live in the Kansas City area and have only > one > > doctor who really gives us any info about the Mito and really it is > > all overwhelming to us. I have so many questions I don't even know > > where to start to I will introduce my sons. > > > > Gavin age four- Mito, PDD, Asthma, history of epilepsy which > started > > at 4 months and ended about 8 months ago and is nolonger on meds, > > dosn't sweat, low tone, temerature intolerance, small head(can't > > remember the long term) that is getting worse, developmental > delays, > > processing and motorplanning problems, and he has weird fatigue and > > overall weakness with illness, weather changes, allergies, normal > > play, and emotional stress. Gavin looks pretty normal and seems > like > > a healthy kid so we gat a lot of questions about his need for a > > wheelchair or why we put limitations on his playtime. He does seem > > to be responding a little to CoQ10. > > > > Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic > > gastroenteritis) EE&EC, Lung disease with episodes of oxygen > hunger, > > was a floppy baby(didn't hold his head up till he was 5 months old, > > Autism (doing great with speech but still has big isusses with > > behaviors and social), Swallowing problems, Excessive sweating, > > temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 > > seizures, abnormal immune system(still going through testing), > slight > > kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring- > corn- > > and who knows allergies. Gage has had over 26 hospital stays for > > feeding intolerance, asthma, common viruses or infection, FTT, and > > reasons that never got figured out, he also seems just fine to most > > he walks, talks, runs, but gets very sick and takes months to get > > over th common cold. Taking COQ10 and not seeing any results, but > he > > has been sick for 3 months straight. > > > > So I guess I am looking for a good Mito doctor who can lead us in > the > > right direction, answer questions, and not make me feel insane. We > > are tired of doctors and hospitals even after we got the diagnosis > > doctors still don't believe that is the answer they feel the kids > are > > doing too well and that they would not make any improvements and > that > > we would more then likely have seen regression. We are just so > > tired!! Thank you for taking the time to read this it sounds like > > everyone has their hands full! Crystal mommy to Gavin and Gage. > > > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 25 > > Date: Wed, 18 Feb 2004 07:36:06 EST > > From: albregra@a... > > Subject: Re: When do I turn around the car seat? > > > > I understand you turn it around at 12 months/or 20 pounds. About > his neck > > control. They sell carseats which recline. They also sell padding > for > > around > > the head. With the extra padding and it reclined he should be > pretty > > comfortable. We love Gracies carseat, I believe it is Evenflow. > The seat > > can recline > > pretty far back, for naps or whatever. All of the adjustments are > in the > > front > > so you can do them with one hand and the child in the seat. The > best part > > is > > that you can adjust the straps from the front also. They have > these wheel > > things so you can tighten or loosen them. This has been a huge > help with > > Grace, > > we can keep one side a little looser to keep her g tube more open. > My only > > problem with a carseat like this is price. The one I have averages > from > > $160-$200. I know it is expensive, but if you really think about > it, this > > is your > > child's comfort and safety. Best of luck, and enjoy your little guy > when he > > gets home. > > > > > > > > [This message contained attachments] > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > > > Please contact mito-owner with any problems or > questions. > > -------------------------------------------------------------------- > ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi We just got a new car seat for Leah. Easter Seals helped pay for it. We only had to contribute about $50 and they paid the rest. It was like around $200 for the seat. It is a car seat that reclines and it can hold a child up to I believe 80 lbs. It is from Britax and is called Marathon. We got it from our speciality baby store. It allows a child up to about 8 years of age to use this. The sales person showed me how high up my daughter needed to grown to be able to use this. I believe we'll be able to use this a long time since she is only 5 years old. Plus I liked the fabric on it and the five point harness system. It does sit up higher on the seat than our old car seat. So I need to boost her in to the seat. Getting good upper muscle strength. But it is a highly rated car seat for kids. Nerenhausen mom to Leah medea_moonstone wrote: > Thank you!The bowling ball/flower stem analogy is great. That is > exactly why I felt I had to inquire about it. I feel better to know > that I'm not the only one who has considered this dilema. My son also > has the Alpha Omega. It is a very good car seat, but I'm not so sure > about the leg room. Maybe it has something to do with the car we have > it in. We also keep it reclined as far back as we can but it's jammed > pretty tight between the front and rear seats. > On a semi-unrelated topic: The Alpha Omega actually has a few bonus's > on other car seats aside from being convertible from > infant/toddler/booster, there is better lower back support/padding > than any other car seat I've found. Most car seats have a very > uncomfortable ledge in the lower back area. Alpha has it too, but > it's lining firmly covers it. It is also the seat Tarok's > Occupational Therapist reccommended. > > Thanks again for offering up your experience in this matter. > > > > > The reason it is recommended to wait until 20 pounds and 12 months > is that > > most typical children have the neck and torso support to hold the > head in > > the event of an accident. > > > > Think of it like a very large bowling ball on a flower stem. In a > car > > accident, the child's head is thrown forward at 60 miles per hour, > then > > returns at the same speed. If the neck isn't strong enough to > support this > > action, the childs neck with break. (Sorry about the graphics. > That is how > > it was explained to me. I was horrified.) > > > > We only turned my little guy around to forward facing a couple of > months > > ago. He will be 3 yo next month. > > > > Our car seat is an Alpha Omega by Cosco. A child can remain rear > facing > > until they are 35 pounds and I can't remember the length but our > little guy > > was quite comfortable. Plenty of leg room. > > > > If you don't feel your son has the neck and torso strength to turn > around > > when he out grows standard car seats like Alpha Omega, you would > then need > > to talk to your insurance company about purchasing a special needs > car seat > > that has special accommodations for children that cannot fit > standard seats > > and car seats... But that is down the road a bit. > > > > Bec > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 23 > > Date: Tue, 17 Feb 2004 22:19:40 -0000 > > From: " medea_moonstone " > > Subject: When do I turn around the car seat? > > > > My 17 month old son (Diagnosed with Leigh's disease)is finally > > nearing the 20 pound mark. He has had his (toddler size, > convertible) > > car seat rear facing until now and does not really have any leg > room > > left. He's about to come back home from a lenghty hospital stay. I > am > > concerned that he should not be forward facing because he has so > > little neck strength. Has anyone else encountered this problem? I'm > > working with physio/occupational therapy to devise some kind of > seat > > belt for his head, but I'm not sure it'll really do the trick. > > > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 24 > > Date: Wed, 18 Feb 2004 07:01:58 -0000 > > From: " Crystal " > > Subject: New to the group and the diagnosis > > > > Hello, I have been reading everything that has been posted but > have > > yet to post. I have two sons that have been diagnosised with > > probable Mito by muscle byopsy but don't have a specific type. We > > have been through four years of heck, but it sounds like everyone > > goes through this. We live in the Kansas City area and have only > one > > doctor who really gives us any info about the Mito and really it is > > all overwhelming to us. I have so many questions I don't even know > > where to start to I will introduce my sons. > > > > Gavin age four- Mito, PDD, Asthma, history of epilepsy which > started > > at 4 months and ended about 8 months ago and is nolonger on meds, > > dosn't sweat, low tone, temerature intolerance, small head(can't > > remember the long term) that is getting worse, developmental > delays, > > processing and motorplanning problems, and he has weird fatigue and > > overall weakness with illness, weather changes, allergies, normal > > play, and emotional stress. Gavin looks pretty normal and seems > like > > a healthy kid so we gat a lot of questions about his need for a > > wheelchair or why we put limitations on his playtime. He does seem > > to be responding a little to CoQ10. > > > > Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic > > gastroenteritis) EE&EC, Lung disease with episodes of oxygen > hunger, > > was a floppy baby(didn't hold his head up till he was 5 months old, > > Autism (doing great with speech but still has big isusses with > > behaviors and social), Swallowing problems, Excessive sweating, > > temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 > > seizures, abnormal immune system(still going through testing), > slight > > kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring- > corn- > > and who knows allergies. Gage has had over 26 hospital stays for > > feeding intolerance, asthma, common viruses or infection, FTT, and > > reasons that never got figured out, he also seems just fine to most > > he walks, talks, runs, but gets very sick and takes months to get > > over th common cold. Taking COQ10 and not seeing any results, but > he > > has been sick for 3 months straight. > > > > So I guess I am looking for a good Mito doctor who can lead us in > the > > right direction, answer questions, and not make me feel insane. We > > are tired of doctors and hospitals even after we got the diagnosis > > doctors still don't believe that is the answer they feel the kids > are > > doing too well and that they would not make any improvements and > that > > we would more then likely have seen regression. We are just so > > tired!! Thank you for taking the time to read this it sounds like > > everyone has their hands full! Crystal mommy to Gavin and Gage. > > > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > Message: 25 > > Date: Wed, 18 Feb 2004 07:36:06 EST > > From: albregra@a... > > Subject: Re: When do I turn around the car seat? > > > > I understand you turn it around at 12 months/or 20 pounds. About > his neck > > control. They sell carseats which recline. They also sell padding > for > > around > > the head. With the extra padding and it reclined he should be > pretty > > comfortable. We love Gracies carseat, I believe it is Evenflow. > The seat > > can recline > > pretty far back, for naps or whatever. All of the adjustments are > in the > > front > > so you can do them with one hand and the child in the seat. The > best part > > is > > that you can adjust the straps from the front also. They have > these wheel > > things so you can tighten or loosen them. This has been a huge > help with > > Grace, > > we can keep one side a little looser to keep her g tube more open. > My only > > problem with a carseat like this is price. The one I have averages > from > > $160-$200. I know it is expensive, but if you really think about > it, this > > is your > > child's comfort and safety. Best of luck, and enjoy your little guy > when he > > gets home. > > > > > > > > [This message contained attachments] > > > > > > > > > ______________________________________________________________________ > __ > > > ______________________________________________________________________ > __ > > > > > > Please contact mito-owner with any problems or > questions. > > -------------------------------------------------------------------- > ---- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Do you use the base on your Alpha Omega? The base adds loads of leg room. I had Spenc reclined and he had tons of space. He is only 30 pounds; so he is supposed to be able to still rear face if necessary. We didn't have any leg room issues when I turned him around at 2.5 years old. It is possible that the leg room might not be as available if the space is tighter between the 2 seats. We had the seat in our Town & Country. Part of the reason we upgraded to this vehicle was because the A&O wouldn't fit rear facing at all in our previous car, Villager. Pretty sad when you have to buy a new car because your car seat won't fit. I wanted a different car anyway. I was sick of crawling across the bucket seat with him to put him in the car. I knew he was only going to get bigger and heavier. The Villager only had 1 sliding door. Good luck. Message: 4 Date: Wed, 18 Feb 2004 14:46:54 -0000 Subject: Re: When do I turn around the car seat? Thank you!The bowling ball/flower stem analogy is great. That is exactly why I felt I had to inquire about it. I feel better to know that I'm not the only one who has considered this dilema. My son also has the Alpha Omega. It is a very good car seat, but I'm not so sure about the leg room. Maybe it has something to do with the car we have it in. We also keep it reclined as far back as we can but it's jammed pretty tight between the front and rear seats. On a semi-unrelated topic: The Alpha Omega actually has a few bonus's on other car seats aside from being convertible from infant/toddler/booster, there is better lower back support/padding than any other car seat I've found. Most car seats have a very uncomfortable ledge in the lower back area. Alpha has it too, but it's lining firmly covers it. It is also the seat Tarok's Occupational Therapist reccommended. Thanks again for offering up your experience in this matter. Quote Link to comment Share on other sites More sharing options...
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