Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Jill-- I'm from MN as well. Both of my sons have had helmets--Colin for plagio and for mild plagio but mostly brachy. Colin, my oldest had a Cranio Cap from Gillette in Minnetonka as well as PT for tort. , my youngest is currently in a STARband (no pt needed) from Tandem Orthotics in Sartell/St Cloud. Both places do the plaster casting instead of a scanner. Are there any specific questions you have about Gillette? We didn't use the Minneapolis facility but did use the Gillette product. I think it did an ok job but Colin was severe and should have probably been in either an active helmet or a 2nd helmet to see the full correction that was possible. I think on a child who is less than severe it would do a good to great job. We chose to take to another facility for two reasons--since we have moved we are closer to St Cloud now than Minnetonka and we really liked at Tandem when we went to her for a free consultation/follow up for Colin after he was out of his helmet. she had a much better 'beside manner' than Dr Woods had and since wasn't going to need PT (which I agree Childrens was excellent for) we decided to go with Tandem this time around. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Jill-- I'm from MN as well. Both of my sons have had helmets--Colin for plagio and for mild plagio but mostly brachy. Colin, my oldest had a Cranio Cap from Gillette in Minnetonka as well as PT for tort. , my youngest is currently in a STARband (no pt needed) from Tandem Orthotics in Sartell/St Cloud. Both places do the plaster casting instead of a scanner. Are there any specific questions you have about Gillette? We didn't use the Minneapolis facility but did use the Gillette product. I think it did an ok job but Colin was severe and should have probably been in either an active helmet or a 2nd helmet to see the full correction that was possible. I think on a child who is less than severe it would do a good to great job. We chose to take to another facility for two reasons--since we have moved we are closer to St Cloud now than Minnetonka and we really liked at Tandem when we went to her for a free consultation/follow up for Colin after he was out of his helmet. she had a much better 'beside manner' than Dr Woods had and since wasn't going to need PT (which I agree Childrens was excellent for) we decided to go with Tandem this time around. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Jill, I am from Minnesota. I actually live in St.Cloud and I am taking my daughter to Tandem O & P here in town. They do STARbands. My daughter has been in hers for 4 weeks and they have been really good. and Josie are the orthos there and they are absolutly wonderful. I'm not sure where you live at in Minnesota but if you can possibly make the trip to St.Cloud I would suggest going to Tandem. If you want their number or have any more questions about them feel free to email me. Isabelle 6 mos STARband 1/31/06 > > Hi.. > > I am new here and was just wondering if anyone is from MN and if so - > where did you go for your helment/band. We have been refered to > Children's hospital in Minneapolis and was just wondering if anyone has > worked with them and what they thought. Any info would be appreciated.. > > Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Jill, I am from Minnesota. I actually live in St.Cloud and I am taking my daughter to Tandem O & P here in town. They do STARbands. My daughter has been in hers for 4 weeks and they have been really good. and Josie are the orthos there and they are absolutly wonderful. I'm not sure where you live at in Minnesota but if you can possibly make the trip to St.Cloud I would suggest going to Tandem. If you want their number or have any more questions about them feel free to email me. Isabelle 6 mos STARband 1/31/06 > > Hi.. > > I am new here and was just wondering if anyone is from MN and if so - > where did you go for your helment/band. We have been refered to > Children's hospital in Minneapolis and was just wondering if anyone has > worked with them and what they thought. Any info would be appreciated.. > > Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Jill, I am in MN as well -- Duluth, actually. With our first son Jaxson we used Gillette (craniocap) and with our newest Eli (7 mo) we are using the STARband. I wasn't much of a fan of the craniocap, but Jax was quite severe, so it didn't do what the " norm " should be I guess. STARband seems to be working so far.. in it 2 months now. Are you located in the minneapolis area or having to drive? I don't have the experience with them as far as the helmet goes, but lots with the docs and our oldest son, Jaxson. Kim > > Hi.. > > I am new here and was just wondering if anyone is from MN and if so - > where did you go for your helment/band. We have been refered to > Children's hospital in Minneapolis and was just wondering if anyone has > worked with them and what they thought. Any info would be appreciated.. > > Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Jill, I am in MN as well -- Duluth, actually. With our first son Jaxson we used Gillette (craniocap) and with our newest Eli (7 mo) we are using the STARband. I wasn't much of a fan of the craniocap, but Jax was quite severe, so it didn't do what the " norm " should be I guess. STARband seems to be working so far.. in it 2 months now. Are you located in the minneapolis area or having to drive? I don't have the experience with them as far as the helmet goes, but lots with the docs and our oldest son, Jaxson. Kim > > Hi.. > > I am new here and was just wondering if anyone is from MN and if so - > where did you go for your helment/band. We have been refered to > Children's hospital in Minneapolis and was just wondering if anyone has > worked with them and what they thought. Any info would be appreciated.. > > Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 - Can I ask what you mean by an " active " helmet? Jill > > Hi Jill-- > I'm from MN as well. Both of my sons have had helmets--Colin for plagio > and for mild plagio but mostly brachy. Colin, my oldest had a > Cranio Cap from Gillette in Minnetonka as well as PT for tort. , > my youngest is currently in a STARband (no pt needed) from Tandem > Orthotics in Sartell/St Cloud. Both places do the plaster casting > instead of a scanner. > > Are there any specific questions you have about Gillette? We didn't use > the Minneapolis facility but did use the Gillette product. I think it > did an ok job but Colin was severe and should have probably been in > either an active helmet or a 2nd helmet to see the full correction that > was possible. I think on a child who is less than severe it would do a > good to great job. We chose to take to another facility for two > reasons--since we have moved we are closer to St Cloud now than > Minnetonka and we really liked at Tandem when we went to her for a > free consultation/follow up for Colin after he was out of his helmet. > she had a much better 'beside manner' than Dr Woods had and since > wasn't going to need PT (which I agree Childrens was excellent for) we > decided to go with Tandem this time around. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 - Can I ask what you mean by an " active " helmet? Jill > > Hi Jill-- > I'm from MN as well. Both of my sons have had helmets--Colin for plagio > and for mild plagio but mostly brachy. Colin, my oldest had a > Cranio Cap from Gillette in Minnetonka as well as PT for tort. , > my youngest is currently in a STARband (no pt needed) from Tandem > Orthotics in Sartell/St Cloud. Both places do the plaster casting > instead of a scanner. > > Are there any specific questions you have about Gillette? We didn't use > the Minneapolis facility but did use the Gillette product. I think it > did an ok job but Colin was severe and should have probably been in > either an active helmet or a 2nd helmet to see the full correction that > was possible. I think on a child who is less than severe it would do a > good to great job. We chose to take to another facility for two > reasons--since we have moved we are closer to St Cloud now than > Minnetonka and we really liked at Tandem when we went to her for a > free consultation/follow up for Colin after he was out of his helmet. > she had a much better 'beside manner' than Dr Woods had and since > wasn't going to need PT (which I agree Childrens was excellent for) we > decided to go with Tandem this time around. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 There are several posts on the same question but to sum it up quickly a " passive " helmet is just a shell they grow into. An active helmet has 'holding points' where you try to keep the growth at a minimum and other areas that you want the head to grow into. When we banded Colin we knew nothing about there being a difference although I do remember being told " it's just a shell their head grows into " by Gilette but no one explained active/passive or that there was such a difference. I think passive helmets are fine if the child is not severe or older when banded. Colin achieved quite a bit of correction with his--just not enough to completely fix his assymetry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 There are several posts on the same question but to sum it up quickly a " passive " helmet is just a shell they grow into. An active helmet has 'holding points' where you try to keep the growth at a minimum and other areas that you want the head to grow into. When we banded Colin we knew nothing about there being a difference although I do remember being told " it's just a shell their head grows into " by Gilette but no one explained active/passive or that there was such a difference. I think passive helmets are fine if the child is not severe or older when banded. Colin achieved quite a bit of correction with his--just not enough to completely fix his assymetry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Jill, An active band will redirect growth to the flat areas. DOC Bands, STAR bands and Hanger bands are all active bands. HTH, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Jill, An active band will redirect growth to the flat areas. DOC Bands, STAR bands and Hanger bands are all active bands. HTH, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Thanks for the advice. We are actully having the antro-dudonal menometry done, a pancretic stimulating test and the test for bacterial overgrowth I should say that Olivia had a pyloroplasty for severe DGE in Dec of 04 then the Nissen Fundoplication in March of 05. She has since developed fat malasorption and has not gained any weight in a year and a half. Everytime she eats she bloats up like she is 9m preg and has horried diarrhea. Its come to the point that we have to look into further testing...she will be getting a tube placed, but at this time we dont know if it will be a G-tube or GJ-tube..its all going to depend on what the tests show. In regards to getting the IVIG at home were looking into that. The first 3 infusions have to be done in a hospital and so far she has only had 2, but after next month I am defiently going to be looking into it. Especially, since last month our sitter canceled (my FIL) and I had to take my other 2 with. Olivia 4: polysaccharied antibody def, GERD,RAD and FTT. Schulman <dietdoc@...> wrote: " ...anyone if from MN. My daughter has an unknown immune defiency and is being seen at Childrens St. , but has to receive her IVIG at U of M...I guess there is some shortage...We are having such a hard time having the dr. try and figure out what is going on...going out to Milwaukee for Motility testing... " . - There are a couple moms from MN, and MI, and hopefully they will chime in. I know that at least one mom from your area has dealt with dysmotility. Sorry to hear that you are having a hard time getting IVIG at your local hospital. Have you considered doing it at home either subcutaneously or IV with home health? With regard to the gut... It is common for PIDers to have GI/motility issues. There should really be a term: PIDD (the second D being dysmotility). Many times, you go trying to chase the precise defect but answers are not there. After my daughter's endoscopy, her GI doc suggested treatment with a heavy dose of an osmotic cathartic, indefinitely. We did not want to pursue further motility testing such as mamometry (which is not without risk) -- since our doc agreed that the treatment would be the same whether or not the test was positive. My hope is that you find answers but don't be alarmed if your kiddo gets treated for a motility disorder, feels better, and you still don't have an exact reason for the problem. There are so many PIDers in our group who have very similar gut complaints and no definitive answers. I think that a few have issues with bacterial overgrowth due to, or as a result of, stool back up; the breath test is easy and may yield answers. There are a couple PIDers that have biochemical/enzymatic issues (such as mito/FOS) as a contributing factor for dysmotility but, I think, they are rare and would go right under a GI specialist's radar. Like many moms here, I have had to learn to live with some ambiguity because gut and immune research is still a work in progress. Of course, when your child is in distress you still have to press on... If your daughter has GI complaints, it should be addressed and followed by a trustworthy GI doc. Let us know how her appointment goes. Best, mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 I live in ND and we see a heme at U of MN...Dr. Kumar... my work email is lschatz@...'m not on line much now as we are doing better. jacob has selective antibody deficiency as well as hypogam and an NK cell defect..on SCIG treating at home. Quoting chiappetta3girls <chiappetta3girls@...>: > I was just curious if anyone if from MN. My daughter has an unknown > immune defiency and is being seen at Childrens St. , but has to > receive her IVIG at U of M because she does not meet the criteria to > receive it at Childrens. I guess there is some shortage and you have > to meet all the criteria to receive it there. Anyways, I would love > to talk with other families from around here. We are having such a > hard time having the dr. try and figure out what is going on with > Olivia. When her immunologist heard that she was going out to > Milwaukee for Motility testing she said she wanted us to see an > immunologist out there since she thinks there may be other issues > going on. > > mommy to: > Olivia 4: polysaccharide antibody def,GERD,RAD,FTT and many GI issues. > > > > Quote Link to comment Share on other sites More sharing options...
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