Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi :Have faith the band will work, they always do as long as they're in trained or experienced hands!! So don't worry about that You're not "putting her thru" anything really, she'll never mind for a second she's wearing the band. We've all asked your "what if" question though, but it'll all work out. Good luck Thurs, let us know how you ALL do with the casting.Debbie abby's mom DOCgrad MI "singhal.rm" <singhal@...> wrote: Good morning everyone!Well, finally on Thursday we go in for my daughter's casting. I am really nervous. Both excited nervous because this has been such a long road to get here, but scared nervous too as we embark on this journey. This nervous feeling has got me questioning what we are doing. After everything we have been through I will not let this opportunity go for my little girl-we are definitely going with the band. But I'm wondering-what if it doesn't work??? What if we put her through this and the brachy doesn't get better, then what? Has anyone ever felt this way?Thanks for all your support:)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 , I think most here would say they felt some of the feelings you described. What good mommy wouldn't worry about those things!? The bands do work and your little one won't mind it one bit! It's WAY harder on the parents then it is on the babies. Everything will be fine and when you see that little head getting rounder you will be so happy with your decision! Good luck on Thursday and let us know how it goes. Marci (Mom to ) Oklahoma > Good morning everyone! > > Well, finally on Thursday we go in for my daughter's casting. I am > really nervous. Both excited nervous because this has been such a > long road to get here, but scared nervous too as we embark on this > journey. This nervous feeling has got me questioning what we are > doing. After everything we have been through I will not let this > opportunity go for my little girl-we are definitely going with the > band. But I'm wondering-what if it doesn't work??? What if we put her > through this and the brachy doesn't get better, then what? > > Has anyone ever felt this way? > > > Thanks for all your support:) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 , I think we all have felt what you are feeling. You will be pleasantly surprised with the correction your daughter receives! These bands and helmets DO work. You'll see! :-) Please keep us posted. --- In Plagiocephaly , " singhal.rm " <singhal@r...> wrote: > Good morning everyone! > > Well, finally on Thursday we go in for my daughter's casting. I am > really nervous. Both excited nervous because this has been such a > long road to get here, but scared nervous too as we embark on this > journey. This nervous feeling has got me questioning what we are > doing. After everything we have been through I will not let this > opportunity go for my little girl-we are definitely going with the > band. But I'm wondering-what if it doesn't work??? What if we put her > through this and the brachy doesn't get better, then what? > > Has anyone ever felt this way? > > > Thanks for all your support:) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi , I've had so many similiar thoughts...so many questions. You are not alone in how you are feeling. This is a scary, uncertain time. You have worked so hard to get to this point. It seems all of us have had to overcome a hurdle or two even before the point of casting. My son has been in his band for almost six weeks. We are seeing progress and it confirms our decision. You too will see results and it will only make you more confident in your decision. All the best to you and your family during this time. You are not alone in all of this Kathleen (Max's mom) --- In Plagiocephaly , " singhal.rm " <singhal@r...> wrote: > Good morning everyone! > > Well, finally on Thursday we go in for my daughter's casting. I am > really nervous. Both excited nervous because this has been such a > long road to get here, but scared nervous too as we embark on this > journey. This nervous feeling has got me questioning what we are > doing. After everything we have been through I will not let this > opportunity go for my little girl-we are definitely going with the > band. But I'm wondering-what if it doesn't work??? What if we put her > through this and the brachy doesn't get better, then what? > > Has anyone ever felt this way? > > > Thanks for all your support:) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 , Just one of many emotions that you'll probably be feeling on this rollercoaster ride! I know once you start seeing some progress, you will feel 100% better about this and it will be full throttle after that. Good luck and don't worry, I don't think you have anything to lose and only rounder shapes ahead (haha! sorry for the pun!). Keep your chin up, your doing a great job and your a good mom for seeking treatment while there is time. ' mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi Reema, Here's a few ideas for your cold feet. 1) Try using some Capsacin lotion/cream. It is a hot type cream used by many people with general peripheral neuropathy. I tried it once - and oh wow - yes, it DOES make your feet hot - I realize I don't need it due to my hot/burning feet, but I felt I needed to " test " it so see if it was something that would help my cold-footed friends. 2) Second, look into the very short Ugg boots. Definitely warm, sheepskin insides, I THINK the short ones just might work with AFOs, and you can walk in Ugg boots, they have a good rubber sole. Shop around, prices vary, you want the best ones for the least amount of $. I recommend http://www.llbean.com although I don't think they carry all the cool colors, like light blue, minty green and pink. My new Uggs are a dark walnut color, they are somewhat higher on my leg, since I don't need AFOs, but these were selling at llbean for $69 US. And I am pretty sure llbean would ship to you. 3) Lastly, maybe try some Cosysoles. You put them in the Microwave before putting them on your feet, then that heat warms you. The only thing I discovered with them is that I can't walk in them because they feel too heavy, plus no rubber tread - but here's the website http://www.cosysoles.ca/ really they are slippers, instead of the shoes that UGGs are. I'm also pretty sure would ship them to you. Also, for something pretty - with good soles, try the Toasters/Toasties from http://www.flaxart.com Like I said my new present of them are red brocade with butterflies and black fur around the ankles. I think they are low enough they would work with AFOs. Get a catalogue sent to you, because they don't show on the webpage. They also come in a green, and yellow brocade, all have fleece interior. The company is in San Francisco, I'm pretty sure they would ship to you too. I had no idea it got so cold in India. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 FYI -- I couldn't find the UGG boots at llbean.com when I looked yesterday. Perhaps they are seasonal? And I agree about the cozysoles. They are good for the warmth but don't try to walk with them on at all. They are heavy and slippery (no soles just fabric). AND they are only warm on the bottom as I recall and I need warm on top as well. They are nice if you can talk someone into putting them in the microwave and then bringing them to you I just saw on footsmart a heat/massager for feet on sale for $19.99. http://www.footsmart.com/Product.aspx?ProductId=1965 I can't recommend it -- never tried it, but I thought about it. My feet can't decide whether to be hot or cold right now so I decided against it. One minutes they're burning and the next they're cold! FootSmart has a lot of good products for problem feet, though. My husband thinks that I'm a tester for them because I've bought so many different things just looking for something that works! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 i could not understand why my feet get so cold and i could not warm them, i got this in another group and thought i would share. it came for the cmt.org. i have both of these. cold and burning. i hate it. tina Poor tolerance to cold weather is probably due to the loss of muscle mass in feet and legs. The loss of muscle mass due to nerve fiber loss is the reason for the wasting of the legs and feet in individuals with CMT. Decreased muscle mass decreases the amount of blood that goes to the lower limbs. The circulating blood is what keeps the normal temperature in the tissues. Bones, tendons and joints require less amount of blood. Cold feet and cold legs are frequent complaints in individuals with CMT. The only treatment is to use leg warmers and decrease exposure of the affected areas to cold weather. Hot feet or burning feet is a sign of axonal neuropathy (loss of wiring of the nerves). Involvement of the axons is frequent in CMT. Pain due to the nerve damage in CMT responds to Neurontin (gabapentin) an anticonvulsant. This is a prescription medication that needs to be prescribed, preferably by a neurologist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 Do you know about Cosysoles, Uggs, Smart Wool or Muluks for your feet? The Uggs I like the best, expecially now their in different styles and colors. http://www.cosysoles.ca/ http://www.uggaustralia.com/womens/boots/ http://www.zappos.com/womens-ugg-shoes http://www.authenticcanadianmukluks.com https://www.smartwool.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi,  I suffer the same problem, although my feet do not always feel cold they are often icy to the touch. Last winter I had what looked like masses of flea bite on the legs which my Dr explained were not bites but minute chilblains caused by poor circulation. My chiropodist checked my blood flow with ultasound and said it was normal and the problem was caused by the fact that the nervous system was not reacting to the cold and reducing bloodflow to the surface of the skin. I think she knows more than the Dr to be honest lol.  Solutions :-  (1) Thermal liners in shoes, very thin but reflect back body heat.  (2) Thermal Socks (Long) as used by climbers and if you dont mind not looking sexy -long johns...they really solve the problem. You can get them either in thermal type material or as I have found natural silk is also very effective.  (3) Massage - I've been to a Chinese Masseuse recently regarding my CMT and she has given me a feet and leg massage (1 hour). My feet are considerably warmer afterwards + I walk much better. I think the latter is due to the fact that she stretches muscle & tendons etc.  (4) Win the lottery and move to a tropical climate..never have any problems in Kenya lol  Hope this helps.  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thanks for that Tina! Sometimes my feet get so cold that they hurt, and I can not fall asleep. For years I would heat up socks full of rice in the microwave and use them like the old-fashioned bedwarmers. Then I found the heated mattress pad and I am in heaven! The coils are more dense at the foot of the bed and it is controlled like an electric blanket. Now if I could just find warm enough boots that will fit my short, wide feet that have high arches! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi ,  I've found that I need to actually sit next to a heat source, like a fireplace or radiating heat panel, or soak in a hot bath or pool to warm up.  I did try thermal socks, but they were snug and drove my nerves crazzzzy. My socks need to be lose. I get real fuzzy cotton ones, but what's interesting is that my feet don't generate enough heat for the socks to work. Even after hours of wearing them, my feet will still be ice cubes underneath, so an external source is needed and fortunately that works well.   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Your feet sound like hey are shaped like mine. Geri Thanks for that Tina! Sometimes my feet get so cold that they hurt, and I can not fall asleep. For years I would heat up socks full of rice in the microwave and use them like the old-fashioned bedwarmers. Then I found the heated mattress pad and I am in heaven! The coils are more dense at the foot of the bed and it is controlled like an electric blanket. Now if I could just find warm enough boots that will fit my short, wide feet that have high arches! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 I have the same exact problem. The only way I can sleep is by soaking my feet in extremely hot water first, drying them off thoroughly and putting at least three pairs of socks on. At many times of the day my feet are extremely cold and I sometimes do this during the day too. The water has to be hot enough to make my feet extremely red and then they finally feel the same temperature as the rest of me. They might even feel warm on the outsides at times but feel like ice cubes underneath. The water thing really works if you want to sleep a bit at night. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 and those suffering with cold feet, In addition to soaking the feet in hot water, I find that if I sit too long, my feet get colder, unless im sitting on my feet, which keeps them covered. anyway, that means I can't stay in one place without my feet getting cold. so,I tend not to out of habit of knowing my feet will freeze up. wish there was another solution but there isn't. If the group has any ideas, I'd like to know. P.S. It has to be something quite inexpensive! Dawn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 dawn, i live in michigan and my feet and hands never get warm. it is so bad. i wear 3 pairs of socks too. i am thinking about take my gloves and cutting the tips off so i can have warm hands. another thing is i always get little red spot on my hands, like where i hit some thing and not notice. they go away in one or two days. tina cmt1a michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Burrrrrr.......me too! Geri I have the same exact problem. The only way I can sleep is by soaking my feet in extremely hot water first, drying them off thoroughly and putting at least three pairs of socks on. At many times of the day my feet are extremely cold and I sometimes do this during the day too. The water has to be hot enough to make my feet extremely red and then they finally feel the same temperature as the rest of me. They might even feel warm on the outsides at times but feel like ice cubes underneath. The water thing really works if you want to sleep a bit at night. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 I use an electric blanket or throw blanket (which is not as expensive). It's the only way to keep my feet warm overnight these days. I also made a small fleece pillow (though you could use any fabric) which I filled with rice. I put that in the microwave for 30 seconds at a time for nice toasty warmth. Best warm wishes! Lenka > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 For cold feet at night, I have a heated mattress pad. It has the highest concentration of coils down near the feet. I turn it on high a little while before I go to bed and then turn it down some overnight. Before I got the heated mattress pad, I used some socks that I'd filled with rice and that I would microwave and put in the foot of the bed under the covers - like old fashioned bed warmers. The only problem is that there is no way to know the true temp and with un-sensitive feet, might result in a burn. As for cold hands, I found these wonderful pulse warmers from the Isabella catalog. I originally got them because my workplace had a granite counter top, which was awfully cold. i am in a new job now, but my hands still get cold. The pulse warmers do wonders! Here's a link: http://www.isabellacatalog.com/prod.cfm/pgc/21300/sbc/21306/inv/12700 They come in black and taupe and are soft and warm... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 me too. I had to find an apartment in Amsterdam with a bathtub (rare) in order to do this. On aircraft it is particularly problematic, particularly the Boeing 777, where the airflow comes from the floor level. > > Quote Link to comment Share on other sites More sharing options...
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