Guest guest Posted October 21, 2008 Report Share Posted October 21, 2008 Hi-- I am very new to all of this, and my little one isn't even in a band yet, but I just wish there was something we could do to help you. This all sounds very frustrating and scary. I did a quick search on the internet to see if I could find any information that might help you. I'm not in the medical field, so I don' have the knowledge, but I guess my suggestion would be to search the internet to see if you can find anything similar to the rash/blisters that your little one is experiencing, so that you know what you are dealing with . Here is an article I found on heat rash http://pediatrics.about.com/od/dermatologytopics/a/06_heat_rash.htm that talks about different types. There is also much more info about other rashes on that site, and there are even photos--perhaps there is one that looks like your son's? It sounds like you have already ruled out any other causese then the band--for instance a read about a similar sounding rash with the blisters that was caused by an allergy to a steroid cream. I will keep thinking on this for you,and I really hope that you find answers soon. H. Mother to Merrick--16-weeks 4-weeks repo, awaiting DOC band > > So I took Jayden back to the orthotist last week because I felt that > his helmet was too big AND because the side burns of the helmet > rubbed his skin raw, made his head break out again and then the break > out traveled down his body. His orthotist is very nice but says the > helmet is the same size. I dont agree because it moved around alot > more than the first one. :/ THEN the second helmet was made with a > different foam, which was more plastic like and it actually held the > sweat in (like kept the sweat wet inside instead of drying like the > other one)which seemed to make him get more blisters by keeping his > head soaked all day and HOT. His ortho said since the break outs > spread to the rest of his body it " cant be the helmet " but I KNOW it > is because he never started any of these issues UNTIL he got the > helmet. NOBODY can explain why my son is breaking out in these > blisters and boils on his head. The ortho says no one has ever seen > that and that my son maybe her first case where he cant wear a > helmet. He's still taking his antibiotics but his head is still > covered in blisters. He had to have an antibiotic cream for his face > cause his skin was peeling off from the side burns of the second > helmet. I'm so frustrated. He had only had the first helmet two weeks > and already had some growth in length which is great. Now we have to > wait till everything clears to put the helmet back on and I feel like > time is ticking by. I'm so irritated by it all. How can my son be a > one in a million case?????? Why has this never been seen and why can > no one even begin to give me an explanation. I Mean...everything that > is being done right now is just a guesstimate so to speak. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2008 Report Share Posted October 21, 2008 Hi- I'm sorry to hear of your frustration. I would be frustrated too! I was really hoping the hypoallergenic foam would solve the problem. I do know of one other mom who went through something similar, really bad skin breakdown that turned into a staph (sp?) infection, got a new helmet with the special foam and the same thing happened again. It was pretty bad. She was convinced that it was the ortho more than just the STARBand because she felt it had more to do with the fit. She ended up switching orthos (in fact, she moved back to live with her parents for a while in another state just to get treatment), stayed with STARBand though, and her son did wonderfully from day one with the new ortho. Do you have any other banding options close by? It might be worth investigating another ortho/provider. I'm sorry I can't be of more help. Please keep us posted. Good luck! Jake-2 (DOCBand Grad 9/19/08) Jordan-4.5 > > So I took Jayden back to the orthotist last week because I felt that > his helmet was too big AND because the side burns of the helmet > rubbed his skin raw, made his head break out again and then the break > out traveled down his body. His orthotist is very nice but says the > helmet is the same size. I dont agree because it moved around alot > more than the first one. :/ THEN the second helmet was made with a > different foam, which was more plastic like and it actually held the > sweat in (like kept the sweat wet inside instead of drying like the > other one)which seemed to make him get more blisters by keeping his > head soaked all day and HOT. His ortho said since the break outs > spread to the rest of his body it " cant be the helmet " but I KNOW it > is because he never started any of these issues UNTIL he got the > helmet. NOBODY can explain why my son is breaking out in these > blisters and boils on his head. The ortho says no one has ever seen > that and that my son maybe her first case where he cant wear a > helmet. He's still taking his antibiotics but his head is still > covered in blisters. He had to have an antibiotic cream for his face > cause his skin was peeling off from the side burns of the second > helmet. I'm so frustrated. He had only had the first helmet two weeks > and already had some growth in length which is great. Now we have to > wait till everything clears to put the helmet back on and I feel like > time is ticking by. I'm so irritated by it all. How can my son be a > one in a million case?????? Why has this never been seen and why can > no one even begin to give me an explanation. I Mean...everything that > is being done right now is just a guesstimate so to speak. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2008 Report Share Posted October 21, 2008 OMG that is what were going through!!!! Jaydens regular ped popped some of the blisters and it was staph infection. His ped said though since it was all over his head that is was from the helmet. I'm not even sure there is another ortho near me. I'm so frustrated cause I felt so lucky that my insurance covered this....it just all seemed too easy. I was right. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 I too fit this description; wanting to make an educated decision and thought I had until audi informed about recalls.......geesh; this is difficult enough and now I am reading about the design of the Nucleus processor being too thick and falling off. How did everyone else manage a decision? The only positive thing is my audi said if there was ONE that was way better than the others then they would be using that one only so that leads me to think there can't be that much difference???? > > I am in the process of getting an implant. I have been reading everyones posts. I am frustrated at picking out a implant, I thought I had wanted the med el. Now I am just not sure. I have been given more info on all implant manufactures. So confusing. I want to make the right decision. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Actually the Nucleus5 processor is thinner & shorter than the previous processors. Skeleton ear molds will anchor the processors. -------------------------------------------------- From: " Shirley M " <nbmalcolm@...> Sent: Thursday, May 19, 2011 7:13 PM < > Subject: Re: getting frustrated > I too fit this description; wanting to make an educated decision and > thought I had until audi informed about recalls.......geesh; this is > difficult enough and now I am reading about the design of the Nucleus > processor being too thick and falling off. How did everyone else manage a > decision? The only positive thing is my audi said if there was ONE that > was way better than the others then they would be using that one only so > that leads me to think there can't be that much difference???? > > >> >> I am in the process of getting an implant. I have been reading everyones >> posts. I am frustrated at picking out a implant, I thought I had wanted >> the med el. Now I am just not sure. I have been given more info on all >> implant manufactures. So confusing. I want to make the right decision. >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 To and others: I recently had the implant surgery and will be activated a week from Wednesday (the Nucleus5). Does the audi normally give you the option of the skeleton ear molds? It sounds like a great idea. Jim Dayton, OH ________________________________ From: <wdywms@...> Sent: Thu, May 19, 2011 9:08:29 PM Subject: Re: Re: getting frustrated Actually the Nucleus5 processor is thinner & shorter than the previous processors. Skeleton ear molds will anchor the processors. -------------------------------------------------- From: " Shirley M " <nbmalcolm@...> Sent: Thursday, May 19, 2011 7:13 PM < > Subject: Re: getting frustrated > I too fit this description; wanting to make an educated decision and > thought I had until audi informed about recalls.......geesh; this is > difficult enough and now I am reading about the design of the Nucleus > processor being too thick and falling off. How did everyone else manage a > decision? The only positive thing is my audi said if there was ONE that > was way better than the others then they would be using that one only so > that leads me to think there can't be that much difference???? > > >> >> I am in the process of getting an implant. I have been reading everyones >> posts. I am frustrated at picking out a implant, I thought I had wanted >> the med el. Now I am just not sure. I have been given more info on all >> implant manufactures. So confusing. I want to make the right decision. >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 I have Med El..Opus 2 is the latest processor. Good idea to compare to Opus 2 rather than Maestro.. Maestro is an older generation of CI You would undoubtedly be implanted with Opus 2..also compare parts prices not only the upgrade price.. for example if there is a lost remote it is much less expensive to replace then other vendors. Also compare insurance between vendors when the the warranty expires. My understanding on the MRI restriction is that it must be an open MRI. I don't know what a light MRI means? The Med El processor is the lightest in the industry.. ________________________________ From: peggy alexander <jimcoljr@...> " " < >; " nbmalcolm@... " <nbmalcolm@...> Sent: Thu, May 19, 2011 9:22:26 PM Subject: Re: Re: getting frustrated My doctor recommended the med el for the purpose of an mri but like someone mentioned that even though you can get a light mri, you can't get a full mri in case need be. Hmmm. The audi said that the med el has less problems with the device. I have been comparing the n5 with the med el maestro. I mean really, they do the same thing. Same amount of electrodes. Battery life is different, med el lasts longer. I did notice the size difference, n5 being smaller and more colorful! But still the thought of not hearing music or my teenagers argue lol hass alot more to do with this than size and color.  Quote Link to comment Share on other sites More sharing options...
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