Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Did you start out at Gillettes, or was that the last place you went. A friend of mine goes there, but our problem is that my husband is a teacher, and our insurance is only through Mayo Clinic. Bummer, but we are going to go in on Thurday and see how this goes. I actually just found out from a friend of ours from Mayo Clinic, that the neurosergon that we are seeing used to work a Gillettes, but he is a Rochester boy and wanted to come back to town. So, I am very happy about that, but it is I guess just a waiting game now to see if this works or not. I will keep everyone posted. Heidi, Jeffry's mom Re: Mayo Clinis MN Hi Heidi:Yes, the helmet is designed by an orthotist there, in conjunction with a plastic surgeon. I understand that the plastic surgeon is a very good SURGEON, but he really didn't take my daughter's condition very seriously, and, in his words, he "really isn't concerned about the cosmetics of plagiocephaly". I found that really, really strange, considering he is a PLASTIC surgeon. If that truly is the case, why would parents fix other disorders that are disfiguring but not life threatening (like a mild case of cleft palate, or burns, or what have you)?? After seeing their helmet and comparing it to the DOC band - really, there is NO COMPARISON. Also I was told the DOC band cost more - but in fact, it only costs $200 more. And includes OT. With the other band I paid for the band, and I had to pay between $130 and $200 (or thereabouts) additionally every week for the PT for tort. So, no bargain there.The thing that disturbed me most was that after 3 weeks we could no longer get the helmet to fit. I took my daughter in to the orthotist EVERY DAY for an adjustment. When I called the surgeon to tell about my troubles, I was told "I really don't care if she wears the helmet or not." Also, "In some cases, the head is just too misshapen to get a good fit and we have to abandon treatment." So, he apparently abandons treatment with those kids who need it most! I was fit to be tied!!! (In fact, just thinking about it again gets my eires up...) Fortunately, CT and the DOC band did not find it too hard to treat my daughter, and today her head looks GREAT! To an untrained eye, you cannot even see the misshapen head, nor the slight asymmetries. They really improved significantly with the DOC band as well as with the additional treatments that we do for her. I hate to even think about how she would have looked had we not followed our own instincts....I read the reply from Marci, and she gave REALLY, REALLY good advice. I think the most important thing is not necessarily the band, but the experience of the orthotist. But then again, at Gillette's they had treated over 400 kids, and look how it went for me....Again, good luck, and let me know if you have any other questions.Kind regards,, "Rhiannon the round-head's" mom :~)> > Does anybody know anything about Mayo Clinic? I need some help. > My > > Peds doctor refered us to a specialist, but we just do not feel > > comfortable. We are starting to wonder if we should go to a > > children's hospital. I have search archives, but nothing comes up > > under Mayo Clinic. If anyone has heard anything or attends the > > clinic, please let me know. We are scheduled for our son's casting > on > > Thursday the 18th. Help, Heidi> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 We started out at Gillettes. I would not recommed Gillettes to anyone with these issues. We are now almost done with the DOC Band. It worked out great and I would give high recommendations. Good luck, and I hope it all works out GREAT! Kind regards, , Rhiannon's mom > > > Does anybody know anything about Mayo Clinic? I need some > help. > > My > > > Peds doctor refered us to a specialist, but we just do not feel > > > comfortable. We are starting to wonder if we should go to a > > > children's hospital. I have search archives, but nothing comes > up > > > under Mayo Clinic. If anyone has heard anything or attends the > > > clinic, please let me know. We are scheduled for our son's > casting > > on > > > Thursday the 18th. Help, Heidi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 , can you tell me where you ended up going if you did not like Gillettes? Heidi > > > > Does anybody know anything about Mayo Clinic? I need some > > help. > > > My > > > > Peds doctor refered us to a specialist, but we just do not > feel > > > > comfortable. We are starting to wonder if we should go to a > > > > children's hospital. I have search archives, but nothing > comes > > up > > > > under Mayo Clinic. If anyone has heard anything or attends > the > > > > clinic, please let me know. We are scheduled for our son's > > casting > > > on > > > > Thursday the 18th. Help, Heidi > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Hi Heidi: I started out at Gillette's. I didn't like it and stopped going, as the doctor stopped treating Rhiannon because he said she was " to misshapen " for them to be able to make a band that fit. So, I really didn't have a choice. Once they had my money, the treatment stopped. I then went to the DOC Band - the closest treatment center is in Madison, Wisconsin at St. 's Hospital. We live in St. , MN, so we drive 5 hours each way to get the DOC band. Take care, > > > > kristin, was the helmet your child first put into a helmet made > > by > > > the hospital? The doctor that we are seeing at Mayo Clinic is > > only > > > one of the three that see children with plagio. But I just do > not > > > feel to comfortable with this. But, I will have to talk to my > > > husband and see what he has to say. I appreciate everything that > > you > > > have told me. It helps out so much. Heidi, Jeffry's mom > > > > > > > > Re: Mayo Clinis MN > > > > > > > > Hi Heidi: > > > > > > > > I live in St. , MN, and my daughter has plagio/tort. When > > I > > > > first called every hospital I could think of to find someone > to > > > help > > > > my daughter, the folks at Mayo said " we don't have anyone > that > > > > specializes in tort/plagio, but Dr. (can't remember name) has > > seen > > > > some babies with this condition and is the best one to help > > you. > > > > > > > > Then I called Gillette Children's in St. . They DO > > specialize > > > in > > > > tort - but to be honest I wasn't happy with them either. One > of > > > the > > > > PT's was WONDERFUL, but I hardly got to work with her as she is > > in > > > > such demand. No wonder, considering that the others I worked > > with > > > > knew less about tort than I did. > > > > > > > > After a VERY VERY BAD experience with their helmet, I made > the > > > > decision to drive 5 hours each way to Madison, Wiscosin and > use > > > the > > > > DOC Band. It is a long drive, and it is grueling, but the > > > experience > > > > has been worth every mile!!!! I would highly recommend you do > > > that, > > > > if you are at all able. If you are in southern MN, it might > not > > > be > > > > such a long drive, as Madison is only 2 1/2 hours or so from > > > > LaCrosse... > > > > > > > > Also, I would suggest a Cranial Osteopath. We see Dr. > > > Hruby > > > > in St. Louis Park. He is WONDERFUL and he was actually the > Dr. > > > that > > > > wrote the prescription for the DOC Band. He has been VERY > VERY > > > > pleased with the DOC band. He will do some cranial work on > > your > > > > child - which, in my experience has really helped the cranial > > > bones > > > > to move into alignment much more quickly than expected! > > > > > > > > I also bring my daughter to a cranial-sacral therapist. (See > > the > > > > website " healingontheriver.com " These therapies have done > > WONDERS > > > for > > > > Rhiannon, and she is already in her second band (she moved > > through > > > > her first one in 5 weeks!) and is right on track develpmentally. > > > > > > > > As always, this is just FYI based on what I did, and is only > > > intended > > > > to help you make your own decisions. And remember, as someone > > > once > > > > told me - " You are the only person in this world that truly > > cares > > > > about your child, so you'd better take this into your own > hands > > > and > > > > get the help you need. If you don't like what someone is > saying > > > or > > > > doing, keep looking until you find someone that you feel > > > comfortable > > > > with. In the end, you are the one who will have to deal with > > the > > > > recovery as well as the outcome. " Which I took as " Don't let > > > anyone > > > > give you any crap. If you don't get a straight answer, or you > > get > > > a > > > > strange answer. Run, don't walk, to someone else. It worked > > for > > > me! > > > > > > > > Good luck to you, and let us know what you decide! > > > > > > > > Kind regards, > > > > , Rhiannon's mom (6 months old, 2nd DOC band, resolving > > tort) > > > > > > > > -- In Plagiocephaly@y..., " heidiezimmerman " <zim34@m...> wrote: > > > > > Does anybody know anything about Mayo Clinic? I need some > > > help. > > > > My > > > > > Peds doctor refered us to a specialist, but we just do not > > feel > > > > > comfortable. We are starting to wonder if we should go to > a > > > > > children's hospital. I have search archives, but nothing > > comes > > > up > > > > > under Mayo Clinic. If anyone has heard anything or attends > > the > > > > > clinic, please let me know. We are scheduled for our son's > > > casting > > > > on > > > > > Thursday the 18th. Help, Heidi > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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