Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 > Hello All, Hello Cherie, > > > I am new to the group, although I have been reading the post for a while now. > Trying to understand and learn. good! > My son is 5 years old diagnosed with autism. > He is nonverbal or should I say says a few words his way. He has forty hrs of > ABA a week goes to preschool four days a week and takes super nu thera and > dmg. And 10000000000+ kisses and hugs a day. > > Chelating sounds very interesting and hard. It can be hard--- but like most things, it gets easier, and you get used to it, and get your questioned answered. > It is all I can just do to get > the supplements he is taking now down him. Well, if you are doing chelation with oral pills (which I would recommend), then chelating is really just like more supplements to get down him. > I belong to an autistic support > group but there is not one person chelating. How do you get all this down your > children when they only eat 5 foods and most of it you cannot add things to it. If you look here: http://home.earthlink.net/~moriam/HOW_TO_buy_DMSA.html there are comments collected about how to get kids to take supplements or chelation agents. (Scroll down near the end, there are lots of items about mixing supplements, etc.) It sounds like you will need to try different approaches to find something that will work for you and your child. good wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 Hi I'm Sally. I have a 13 year old AS son who started taking Houston Peptizydes last Saturday. He seems a little more keen to do jobs around the house, tried a couple of new foods but other than that no change yet. He is bowel incontinent and overweight with a rather large bulging tummy. Although he is sociallly restricted I am more keen to see some change with his bowels. I am aware fibre and water are important and sometimes use the odd laxitive but am not keen with this route. I have not had time to research it all yet and wondered if someone could explain what phenols are? Sally New - any ideas? >Anyone have any ideas? TIA. Jo Hi Jo whereabouts are you? I'm in Perth. Does your daughter react to phenols at all? Prue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 >>>>I have a 13 year old AS son who started taking Houston Peptizydes last Saturday. He seems a little more keen to do jobs around the house, tried a couple of new foods but other than that no change yet. Well, that is a start. You should continue to see steady improvements over the next couple weeks. With older children and adults, they have had longer to develop coping skills for feeling badly. It may take them a little time to un-learn these patterns because they are no longer necessary. It took me a month to get used to feeling better...and I knew exactly what was going on. Feeling good is still feeling different. >>> I have not had time to research it all yet and wondered if someone could explain what phenols are? Phenols are a chemical structure that are present in all foods. Some have higher amounts and some lower. Some people seem to have trouble digesting and processing foods with higher amounts of phenolic compounds. Salicylates are a particular type of phenol. It might be someone is really intolerant of salicylates and not all phenols. Salicylates sensitivity is something the Feingold program focuses on. Aspirin is salicylate acid, and it is sometimes called aspirin intolerance. Beside Dana's page, here are two more resources on this: www.enzymestuff.com/epsomsalts.htm www.feingold.org . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Is it all hit and miss guessing what a child can tolerate or not tolerate or is there a company that can test? Re: New >>>>I have a 13 year old AS son who started taking Houston Peptizydes last Saturday. He seems a little more keen to do jobs around the house, tried a couple of new foods but other than that no change yet. Well, that is a start. You should continue to see steady improvements over the next couple weeks. With older children and adults, they have had longer to develop coping skills for feeling badly. It may take them a little time to un-learn these patterns because they are no longer necessary. It took me a month to get used to feeling better...and I knew exactly what was going on. Feeling good is still feeling different. >>> I have not had time to research it all yet and wondered if someone could explain what phenols are? Phenols are a chemical structure that are present in all foods. Some have higher amounts and some lower. Some people seem to have trouble digesting and processing foods with higher amounts of phenolic compounds. Salicylates are a particular type of phenol. It might be someone is really intolerant of salicylates and not all phenols. Salicylates sensitivity is something the Feingold program focuses on. Aspirin is salicylate acid, and it is sometimes called aspirin intolerance. Beside Dana's page, here are two more resources on this: www.enzymestuff.com/epsomsalts.htm www.feingold.org . ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 > Is it all hit and miss guessing what a child can tolerate or not tolerate or is there a company that can test? This lab has a good list of tests you can consider http://www.greatplainslaboratory.com/ Tests appear to be about 80% accurate. So they can give you a baseline, but you will probably need to make further adjustments. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Hello to all: My son is 6 years old with ASD. nonverbal. He only eats 6 things: hot dogs. pizza hut pizza, cheeses (only snyder brand) some time mac and cheese, banana popsicle, and only drinks water. I would love to give him enzymes and supplements but do not know how to get them into him. I would love to start the SCD diet, but not sure where to begin. He will not try any thing new and he does not crave anything so he would just not eat. He weighs 43 pounds. Other than autism he is very healthy and happy (that sounds funny but I know everyone understands what I am saying) Any suggestions? Thank you so much! Cherie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Hi Cherie: My son just started 3 weeks ago on enzymes Peptizyde and Prime Zyme (he's 20), so I wont be of much help with progress etc., but I will tell you I mix the enzmes in cold water and there is no taste. I tasted it myself. My son takes it just fine mixed in water. Worth a try. Good Luck. Eileen >From: riyoelam@... >Reply- > >Subject: Re: New >Date: Fri, 12 Nov 2004 09:34:26 EST > > >Hello to all: >My son is 6 years old with ASD. nonverbal. He only eats 6 things: hot dogs. >pizza hut pizza, cheeses (only snyder brand) some time mac and cheese, >banana >popsicle, and only drinks water. I would love to give him enzymes and >supplements but do not know how to get them into him. I would love to start >the SCD >diet, but not sure where to begin. He will not try any thing new and he >does >not crave anything so he would just not eat. He weighs 43 pounds. Other >than >autism he is very healthy and happy (that sounds funny but I know everyone >understands what I am saying) Any suggestions? > Thank you >so >much! > >Cherie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 You can go back to my post #60942 for some suggestions and I do have other suggestions that I've not used but that you might be interested in (let me know if you are). Looking at this list I'm not seeing any common factor in the foods (but maybe someone else does?) such as texture or ingredients. Have you had his eyes checked? My daughter's poor eyesight is what caused her to limit her food choices down to a short list like this. I think you can freeze the enzymes in his popsicles. Other supplements you'd have to check to see if they can be frozen. Best Wishes! Becky > > Hello to all: > My son is 6 years old with ASD. nonverbal. He only eats 6 things: hot dogs. > pizza hut pizza, cheeses (only snyder brand) some time mac and cheese, banana > popsicle, and only drinks water. I would love to give him enzymes and > supplements but do not know how to get them into him. I would love to start the SCD > diet, but not sure where to begin. He will not try any thing new and he does > not crave anything so he would just not eat. He weighs 43 pounds. Other than > autism he is very healthy and happy (that sounds funny but I know everyone > understands what I am saying) Any suggestions? > Thank you so > much! > > Cherie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Common factors plus foods many are intolerant of: casein, gluten, nitrates, BHT, & artificial dye/flavoring -GA Looking at this list I'm not seeing any common factor in the foods (but maybe someone else does?) such as texture or ingredients. >He only eats 6 things: >hot dogs. > pizza hut pizza, cheeses (only snyder brand) some time mac and cheese, banana > popsicle, and only drinks water. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 If he is gluten and casein intolerant, that problem could be contributing to his need to self limit foods and once the gluten and casein are out of his system (3 months or so for gluten a few days for casein), and in addition any zinc deficiencies are addressed (zinc deficiency actually changes the way people taste things), he might expand his diet. Thing is not ALL the foods he chooses have to contain gluten and casein for that limiting effect to be an issue. Some people do end up needing the GFCF diet before the enzymes. Good luck w/whatever you decide to do! Re: New Common factors plus foods many are intolerant of: casein, gluten, nitrates, BHT, & artificial dye/flavoring -GA Looking at this list I'm not seeing any common factor in the foods (but maybe someone else does?) such as texture or ingredients. >He only eats 6 things: >hot dogs. > pizza hut pizza, cheeses (only snyder brand) some time mac and cheese, banana > popsicle, and only drinks water. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 , Hi and welcome to the group. I'm glad the info you found here was helpful to your daughter and son-in-law in making their decision about your grandson's treatment. It's so great to meet a grandpa here and your daughter is blessed to have a dad who cares so much about his grandson's health. Do you know what kind of band your grandson will be wearing? $1700 sounds about right depending on the brand of helmet. DOCbands can cost up to $3000. Have they checked with their insurance to see if any of the cost of the helmet will be covered? Please let us know how the appt goes on Feb 1st. BTW, what is your grandson's name and do you have any pictures of him and the shape of his head that you would like to post in our Photos section so we can all see how cute he is? Again, welcome. Becky, mom to , repo grad in Pgh, PA --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi It's great that you are such a caring and involved grandparent- he's a lucky little boy. It is hard to go ahead sometimes when family members have different opinions, but my experience is that all those people who said he will just grow out of it usually tell you you have done exactly the right thing when the band actually arrives and they see the change. In other words, they don't want to make a big deal of it (just as you might say something doens't matter too much to make someone feel better) and probably realise it's not life- threatening, but given that there is something you can do which works, they then all start supporting banding like crazy! Good luck with the band fitting- it will be great if you can go over and be exactly the same as you always are- I know loads of mums and dads really worry what say the doting grandpa or grandma will say, so I'm sure being as positive as you are now, this will really help everyone adjust. By the way, the amount looks right (I've seen worse!!) Keep us posted on his progress Hannah (mum to Lucia, London, UK) Cranio grad --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hello and welcome to the group! I would say that all the bands/helmets are custom made. They have to be because all the babies' heads are different. The helmets can range from $1000-$3700 depending on product and services. What area are they going to for treatment? Natasha Atlanta, GA --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi , It's great that they have so much family support. Wow they moved fast - 10 days! Do you know what kind of band it was - STAR, Hanger, or some other? Do you know where they went? The $1700 sounds like the right ballpark for STAR or Hanger and maybe some local bands. Check out this website for great plagio stuff http://www.cafepress.com/preciousbambino mom to na DOC Grad 2/04 Tort Resolved South Carolina www.thefilyaws.com <sunshine_male@...> wrote: About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, "Helmet Laws Suck". Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. Thanks again for the info in the postings (sunshine_male) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi , Welcome to the group. How nice of you to help research plagio for your daughter and grandson. I wish you all luck on your journey! There are " helmet laws suck " and other plagio/helmet themed merchandise for babies at: http://www.cafepress.com/preciousbambino . Good luck! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 , What a wonderful grandfather you are to help your grandson in this manner. It does help so much to be able to communicate with other parents in a similar situation; information from the medical profession on plagiocephaly can be rather light, or non-existant in some cases, but hopefully that will improve over time. Welcome to the group, by the way! I'd love to hear how your grandson does at the initial band fitting. If you have time, please post and let us know. I see you have already received replies regarding band cost, so I won't repeat them. Take care, Christie (Mom to Repo'd Remy) --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi , Welcome to the group. What a great Grandpa you are!! :-) I'm glad you find this site so helpful. Keep us posted on your grandson's progress. > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 They are getting it at some place in St Cloud, MN I am not sure what type it is, heck I just learned how to spell it. When I figure out more, I will post it on here. The problem now is getting him to wear something on his head to prepare him for it. He equates head wear with the car seat, neither of which impress him. I need to check mail more than once a day, 59 messages can be a bit overwhelming. Filyaw <monicash@...> wrote: Hi , It's great that they have so much family support. Wow they moved fast - 10 days! Do you know what kind of band it was - STAR, Hanger, or some other? Do you know where they went? The $1700 sounds like the right ballpark for STAR or Hanger and maybe some local bands. Check out this website for great plagio stuff http://www.cafepress.com/preciousbambino mom to na DOC Grad 2/04 Tort Resolved South Carolina www.thefilyaws.com <sunshine_male@...> wrote: About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, "Helmet Laws Suck". Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. Thanks again for the info in the postings (sunshine_male) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Love your t-shirt idea! I think your grandson will surprise you with how easily he adapts to wearing the helmet. Good luck with everything! Christy - mom to Kennedy Brachy/plagio/tort DOC band 11/23/04 Tulsa, OK <sunshine_male@...> wrote: They are getting it at some place in St Cloud, MN I am not sure what type it is, heck I just learned how to spell it. When I figure out more, I will post it on here. The problem now is getting him to wear something on his head to prepare him for it. He equates head wear with the car seat, neither of which impress him. I need to check mail more than once a day, 59 messages can be a bit overwhelming. Filyaw <monicash@...> wrote: Hi , It's great that they have so much family support. Wow they moved fast - 10 days! Do you know what kind of band it was - STAR, Hanger, or some other? Do you know where they went? The $1700 sounds like the right ballpark for STAR or Hanger and maybe some local bands. Check out this website for great plagio stuff http://www.cafepress.com/preciousbambino mom to na DOC Grad 2/04 Tort Resolved South Carolina www.thefilyaws.com <sunshine_male@...> wrote: About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, "Helmet Laws Suck". Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. Thanks again for the info in the postings (sunshine_male) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Hi , You can change your membership to no email and then just check on the main board. I keep the email otherwise I can't keep up with what I have read or not As for things on his head. I imagine you will all be quite suprised how fast he adjusts. They fit so "perfectly" that the kids really don't notice them. My daughter wore 2 bands for a total of 4 months. To this day she will take any hat off of her head in 30 seconds unless it's tied down. She never once tried to take her band off. Sometimes it takes a few days for them to get used to sleeping in them but if it fits right there usually is no problem. They are most likely getting a STARband at Tandem Orthotics & Prosthetics, 122 12th Avenue North, St Cloud, MN 56303, 1-877-4TANDEM, Schoonmaker, CPO http://www.4tandem.com www.orthomerica.com It's the only St Cloud ortho I see in our database. Sorry there is no corresponding parent email for a local experience. mom to na DOC Grad 2/04 Tort Resolved South Carolina www.thefilyaws.com <sunshine_male@...> wrote: They are getting it at some place in St Cloud, MN I am not sure what type it is, heck I just learned how to spell it. When I figure out more, I will post it on here. The problem now is getting him to wear something on his head to prepare him for it. He equates head wear with the car seat, neither of which impress him. I need to check mail more than once a day, 59 messages can be a bit overwhelming. Filyaw <monicash@...> wrote: Hi , It's great that they have so much family support. Wow they moved fast - 10 days! Do you know what kind of band it was - STAR, Hanger, or some other? Do you know where they went? The $1700 sounds like the right ballpark for STAR or Hanger and maybe some local bands. Check out this website for great plagio stuff http://www.cafepress.com/preciousbambino mom to na DOC Grad 2/04 Tort Resolved South Carolina www.thefilyaws.com <sunshine_male@...> wrote: About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, "Helmet Laws Suck". Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. Thanks again for the info in the postings (sunshine_male) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Ok, I still don't know what kind of helmet it is, but the web site that shows it is http://www.centracare.com/whatsnew/beacon/peds_specialties.html and it's being made by http://www.4tandem.com/. Anyway, 1 Feb is the day he is getting it. He finally accepted wearing a tight fitting stocking cap a little while ago, so it might not be as bad as I think it will. Christy <christytolar@...> wrote: Love your t-shirt idea! I think your grandson will surprise you with how easily he adapts to wearing the helmet. Good luck with everything! Christy - mom to Kennedy Brachy/plagio/tort DOC band 11/23/04 Tulsa, OK <sunshine_male@...> wrote: They are getting it at some place in St Cloud, MN I am not sure what type it is, heck I just learned how to spell it. When I figure out more, I will post it on here. The problem now is getting him to wear something on his head to prepare him for it. He equates head wear with the car seat, neither of which impress him. I need to check mail more than once a day, 59 messages can be a bit overwhelming. Filyaw <monicash@...> wrote: Hi , It's great that they have so much family support. Wow they moved fast - 10 days! Do you know what kind of band it was - STAR, Hanger, or some other? Do you know where they went? The $1700 sounds like the right ballpark for STAR or Hanger and maybe some local bands. Check out this website for great plagio stuff http://www.cafepress.com/preciousbambino mom to na DOC Grad 2/04 Tort Resolved South Carolina www.thefilyaws.com <sunshine_male@...> wrote: About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, "Helmet Laws Suck". Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. Thanks again for the info in the postings (sunshine_male) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hi , and welcome to the group. I just wanted to say that there is nothing wrong with being a bit overprotective of your grandson. ) Then, that I think your kids are on the ball to get him started right away. Let us know how the fitting goes, and don't worry, he will tolerate the band just fine. Most kids do. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad http://www.geocities.com/samipa74/Willow_Lanette.html --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 One more thing, before I forget. If you think that your mailbox is flooding you can edit your membership. You don't have to receive individual emails. If you have any trouble let me know, and I will do it for you. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad http://www.geocities.com/samipa74/Willow_Lanette.html --- In Plagiocephaly , <sunshine_male@y...> wrote: > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 , I don't have any info about the ortho they are using but I live in Andover (near Anoka) and my 8 month old daughter has been in a Starband since Oct. 22nd. We go down to Minneapolis Childrens hospital,they have a Craniofacial team there too. Our Ortho is Winkley Orthotics, I really like them, everyone is very nice. If your kids want anyone to talk to about what's going to happen or have questions or want to vent, email me at mcasper10@..., I can give you my phone number and talk to them. > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hi , Welcome to the group. Your grandson is very lucky to have you as his advocate! You are an awesome grandpa!! Where are you located? Please keep us posted on him. > About 10 days ago I found out my 4 month old grandson has Plagiocephaly. At that point I started reading all I can on it, from all sources. Keeping up with this group has been very helpful so far. It's told me that he is not as bad as many are, and the importance of starting early with treatment. He has a flat spot on the right rear of his head and a ear and eye are off just slightly. > Both my wife and I are the oldest of 8 with several Rn's in the family. My daughters in laws are from families of 12 and 7. Comments came from all directions, some yes and some said he will grow out of it. With that in mind I printed many of the comments in this group to help them make a decision. I went from, lets position and see if he will grow out of it to lets get the helmet made. > Yesterday morning the decision was made by my daughter and her husband to have him fitted. They just got back from a custom fitting, and the helmet will be ready on Feb 1. > The only question I have is I see very little on custom made helmets and the cost. They were told this morning that it will be about 1700 dollars. Does this sound right? > Now all I have to do is get him a shirt like I got a few years ago in Sturgiss, " Helmet Laws Suck " . > Being in my late 50s, and my first grandchild, I am often accused of being over protective or him. > Thanks again for the info in the postings > > (sunshine_male) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.