Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Congratulations on the casting. Regarding breastfeeding, I kept the band on when I nursed my son. It was uncomfortable at first and took some adjusting on both our parts but after you get used to it everything is fine. I would think the 20 to 40 minutes out are for the initial adjustment period. When my son got his band I was told to do a spot check every 3 to 4 hours and leave the band off until any red marks disappeared then to go the 23 hours after the initial two days of adjustment. I think the time frame in the band depends on the child's severity and it also depends on growth spurts and age started. Good luck. Candy, mom to (DOCbanded #1 - 10/5/01, #2 - 2/25/02) > Hi, everyone, it's been maybe a few weeks since i've been on here, > I'm from Columbia MO and my 6 mo. old son, Kai(pronounced > like tie) has mild tort and mod-severe plagiocephaly. We went for > our casting for a Starband last Tue. and it went really well, our > orthotist used a fiberglass roll to cast, it was really quick and > lots easier and neater than what I thought after seeing the trad. > casting method on the net. He hasn't done too many posit. bands at > this job, but apparently did before this. He does mostly postsurgical > bands that he himself makes. He says he has more success when he > modifies the mold himself, instead of sending it to the company to > modify when they make the helmet. He doesn't take measurements before > or during, he said he keeps the mold for a few months, but can't keep > it for the whole process. He goes mainly by looking, not > measurements. Is this unusual, or worrisome? he seems reliable, very > easy to talk to and seems to be knowledgeable. He stated that Kai's > head is in the upper 30% as far as severity goes, that's why I called > it mod-severe, or maybe that's severe. He said he would probably have > to wear the helmet about 6 mo. or more, I was disappointed as the > time on the starband site says median of 3-5mo. or something, but as > I read thru the emails, I see it seems to really vary. He said it > would be a little harder because Kai's head is kind of short to the > peak of his head from the forehead, is that brachy? We have another > week or so until we get the helmet, I'm wondering about the looseness > everyone talks about, guess I'll find out. By the way, if anyone > breastfeeds, do you take the helmet off while doing so? Our orthotist > mentioned taking the helmet off every 4 hrs for 20-40 min. at least > until the redness disappeared, I thought it was supposed to be on for > 23 hrs? Probably will have more questions in a short time, it almost > seems like this was all a nightmare, because we don't have the helmet > yet and life goes on as usual. We are doing the two exercises the Dr. > recommended for his tort and he's doing better with those. Well I'll > write soon, thanks for listening Kaneko > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Oh good I am glad to read the answer to the breastfeeding question. I too was wondering about wearing the band while breastfeeding.Glad to hear everything went well after getting adjusted. Mya gets her band on March 6th. I am very anxious to see how she does with it. Christi --- In Plagiocephaly@y..., " candaceanddavid " <Candaceanddavid@a...> wrote: > Congratulations on the casting. Regarding breastfeeding, I kept the > band on when I nursed my son. It was uncomfortable at first and took > some adjusting on both our parts but after you get used to it > everything is fine. I would think the 20 to 40 minutes out are for > the initial adjustment period. When my son got his band I was told > to do a spot check every 3 to 4 hours and leave the band off until > any red marks disappeared then to go the 23 hours after the initial > two days of adjustment. I think the time frame in the band depends > on the child's severity and it also depends on growth spurts and age > started. Good luck. > Candy, mom to (DOCbanded #1 - 10/5/01, #2 - 2/25/02) > > > > > --- In Plagiocephaly@y..., " kaneko1232002 " <kaneko1232002@y...> wrote: > > Hi, everyone, it's been maybe a few weeks since i've been on here, > > I'm from Columbia MO and my 6 mo. old son, Kai(pronounced > > like tie) has mild tort and mod-severe plagiocephaly. We went for > > our casting for a Starband last Tue. and it went really well, our > > orthotist used a fiberglass roll to cast, it was really quick and > > lots easier and neater than what I thought after seeing the trad. > > casting method on the net. He hasn't done too many posit. bands at > > this job, but apparently did before this. He does mostly > postsurgical > > bands that he himself makes. He says he has more success when he > > modifies the mold himself, instead of sending it to the company to > > modify when they make the helmet. He doesn't take measurements > before > > or during, he said he keeps the mold for a few months, but can't > keep > > it for the whole process. He goes mainly by looking, not > > measurements. Is this unusual, or worrisome? he seems reliable, > very > > easy to talk to and seems to be knowledgeable. He stated that Kai's > > head is in the upper 30% as far as severity goes, that's why I > called > > it mod-severe, or maybe that's severe. He said he would probably > have > > to wear the helmet about 6 mo. or more, I was disappointed as the > > time on the starband site says median of 3-5mo. or something, but > as > > I read thru the emails, I see it seems to really vary. He said it > > would be a little harder because Kai's head is kind of short to the > > peak of his head from the forehead, is that brachy? We have another > > week or so until we get the helmet, I'm wondering about the > looseness > > everyone talks about, guess I'll find out. By the way, if anyone > > breastfeeds, do you take the helmet off while doing so? Our > orthotist > > mentioned taking the helmet off every 4 hrs for 20-40 min. at least > > until the redness disappeared, I thought it was supposed to be on > for > > 23 hrs? Probably will have more questions in a short time, it > almost > > seems like this was all a nightmare, because we don't have the > helmet > > yet and life goes on as usual. We are doing the two exercises the > Dr. > > recommended for his tort and he's doing better with those. Well > I'll > > write soon, thanks for listening Kaneko > > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi , That's great that you have the casting behind you, that should be the hardest part of all of this. That's neat that he used a fiberglass roll, I don't remember ever hearing of that before. How did Kai do during the casting process? My ortho only took one set of measurements and that was at our initial visit, right before he casted the twins. As far as I know, I don't think he had the mold of their heads at all after we got the bands on. He also did everything visually, which at first I was bit concerned about but he did have many years of experience behind him and he did do an excellent job. I had also emailed him a few months back about the differences between some STARbands, and since youmentioned that your ortho makes some modifications, I thought I would share this info with you: The Star Band is molded in Florida, however the star band personell are very helpful in modifying their design to assist the orthotist in fitting the helmet as well as possible. These modifications can not change the design that has been approved by the FDA. They will alter the color and the side of the opening. Once the orthotist receives the helmet from Florida it may be finished or unfinished. We usually receive them unfinished because there are usually several modifications necessary. Thus the orthotist has the freedom to increase the size of the opening on the top of the helmet, making them all look different in appearance. If the physician has specific requests in the manufacturing or fitting of the helmet, he certainly has the authority to make them. I'm not exactly sure if that clarifies it for you, but I thought it might help you feel more comfortable with your ortho. (Now I will get teased because everyone knows I had a HUGE crush on my ortho!) Be sure to get extra snuggle time in with Kai's little noggin and let us know when he gets fitted for his band! Niki Kaylie & Danny (STAR grads) Phila., PA > Hi, everyone, it's been maybe a few weeks since i've been on here, > I'm from Columbia MO and my 6 mo. old son, Kai(pronounced > like tie) has mild tort and mod-severe plagiocephaly. We went for > our casting for a Starband last Tue. and it went really well, our > orthotist used a fiberglass roll to cast, it was really quick and > lots easier and neater than what I thought after seeing the trad. > casting method on the net. He hasn't done too many posit. bands at > this job, but apparently did before this. He does mostly postsurgical > bands that he himself makes. He says he has more success when he > modifies the mold himself, instead of sending it to the company to > modify when they make the helmet. He doesn't take measurements before > or during, he said he keeps the mold for a few months, but can't keep > it for the whole process. He goes mainly by looking, not > measurements. Is this unusual, or worrisome? he seems reliable, very > easy to talk to and seems to be knowledgeable. He stated that Kai's > head is in the upper 30% as far as severity goes, that's why I called > it mod-severe, or maybe that's severe. He said he would probably have > to wear the helmet about 6 mo. or more, I was disappointed as the > time on the starband site says median of 3-5mo. or something, but as > I read thru the emails, I see it seems to really vary. He said it > would be a little harder because Kai's head is kind of short to the > peak of his head from the forehead, is that brachy? We have another > week or so until we get the helmet, I'm wondering about the looseness > everyone talks about, guess I'll find out. By the way, if anyone > breastfeeds, do you take the helmet off while doing so? Our orthotist > mentioned taking the helmet off every 4 hrs for 20-40 min. at least > until the redness disappeared, I thought it was supposed to be on for > 23 hrs? Probably will have more questions in a short time, it almost > seems like this was all a nightmare, because we don't have the helmet > yet and life goes on as usual. We are doing the two exercises the Dr. > recommended for his tort and he's doing better with those. Well I'll > write soon, thanks for listening Kaneko > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi : I'm glad the casting is done & over with! That's the hard part - the rest should be a piece of cake. Not all orthotists take measurments of the child's head. Mine didn't either. Be sure you take pictures of every angle of Kai's head to monitor changes that might occur, probably bi-weekly or even weekly photos. Those will be a big part in monitoring improvement! The amount of time a child spends in their band definitely varies. It depends on the severity, age, growth spurts of each child. They do say avg treatment time is 4 mos.. Usually for the first several days, orthotists recommend putting the band on for an hour, then leaving it off for an hour. Hr. on Hr. off. This is to monitor the red spots. But usually after one week in the band, they say it's ok to leave the band on for the full 23 hrs a day as long as there are not bad red spots (that don't go away w/i one hour). Be sure you let us know when Kai's band is in. Good luck! Debbie Abby's mom DOCGrad MI > Hi, everyone, it's been maybe a few weeks since i've been on here, > I'm from Columbia MO and my 6 mo. old son, Kai(pronounced > like tie) has mild tort and mod-severe plagiocephaly. We went for > our casting for a Starband last Tue. and it went really well, our > orthotist used a fiberglass roll to cast, it was really quick and > lots easier and neater than what I thought after seeing the trad. > casting method on the net. He hasn't done too many posit. bands at > this job, but apparently did before this. He does mostly postsurgical > bands that he himself makes. He says he has more success when he > modifies the mold himself, instead of sending it to the company to > modify when they make the helmet. He doesn't take measurements before > or during, he said he keeps the mold for a few months, but can't keep > it for the whole process. He goes mainly by looking, not > measurements. Is this unusual, or worrisome? he seems reliable, very > easy to talk to and seems to be knowledgeable. He stated that Kai's > head is in the upper 30% as far as severity goes, that's why I called > it mod-severe, or maybe that's severe. He said he would probably have > to wear the helmet about 6 mo. or more, I was disappointed as the > time on the starband site says median of 3-5mo. or something, but as > I read thru the emails, I see it seems to really vary. He said it > would be a little harder because Kai's head is kind of short to the > peak of his head from the forehead, is that brachy? We have another > week or so until we get the helmet, I'm wondering about the looseness > everyone talks about, guess I'll find out. By the way, if anyone > breastfeeds, do you take the helmet off while doing so? Our orthotist > mentioned taking the helmet off every 4 hrs for 20-40 min. at least > until the redness disappeared, I thought it was supposed to be on for > 23 hrs? Probably will have more questions in a short time, it almost > seems like this was all a nightmare, because we don't have the helmet > yet and life goes on as usual. We are doing the two exercises the Dr. > recommended for his tort and he's doing better with those. Well I'll > write soon, thanks for listening Kaneko > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 - The Furby story really cracked me up! That is hillarious!!! Thanks for sharing! Marci (Mom to ) oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi, Niki, thanks for your reply, you clarified some confusion I was having about the difference in looks of the starbands I've seen in pics, I thought they would all have to look exactly the same. I'm glad that other orthotists that have a good rep also do things visually, that makes me feel better, you're right. Kai did fine during the casting, it only took about 5 min. with that fiberglass roll, he put that stockinette over his head, but since it was not casting material he didn't have to go over his eyes, and he cut holes for them too, that made me feel better at least! And no mess! He cried but my husband was able to hold him in his lap and that was nice. Our orthotist was so quick and so good at it, that alone made me feel comfortable with him, and great with kids(you would hope as many as he sees!) He could just look at Kai's head and see so much more than we even could in a second! I have a funny story about the casting actually we've all had a good laugh over it anyway-hope you enjoy it! I had read the tips on how to make the casting go as smoothly as poss. on the plagio website so I took a little electronic Furby toy that is Kai's older brother Sage's-Kai loves it because it seems to talk to him when he touches it, he just smiles and giggles. So I thought, well ,maybe that will distract him. It so happens with all the movement on the the way into the orthotist' office Furby woke up from a long nap and was very talkative, he jabbered and jabbered the whole time we were asking questions (we hadn't met our orthotist yet) I finally stuck it under my coat and it still was annoying! It didn't help Kai at all during the casting, he was mad and nothing really would have distracted him, it just added to the noise,( at least it was short.) When we got into the car after the appointment Furby was stilll trying to have a conversation and noone was listening. I was trying to talk with my husband about how it all went, and irritated , stuffed it into the glovebox trying to mute it, as I was shutting the door it said, " Furby no like!! " and finally shut up! We haven't heard from it since! It was a great laugh to break the tension of this whole thing anyway, and another story to tell Kai when he gets older! Anyhow, thanks for your reply!Appreciate you all and have already referred a couple people to the website! (mom to Kai-Columbia MO) > Hi , > That's great that you have the casting behind you, that should be the > hardest part of all of this. That's neat that he used a fiberglass > roll, I don't remember ever hearing of that before. How did Kai do > during the casting process? > > My ortho only took one set of measurements and that was at our > initial visit, right before he casted the twins. As far as I know, I > don't think he had the mold of their heads at all after we got the > bands on. He also did everything visually, which at first I was bit > concerned about but he did have many years of experience behind him > and he did do an excellent job. I had also emailed him a few months > back about the differences between some STARbands, and since > youmentioned that your ortho makes some modifications, I thought I > would share this info with you: > > The Star Band is molded in Florida, however the star band personell > are very helpful in modifying their design to assist the orthotist in > fitting the helmet as well as possible. These modifications can not > change the design that has been approved by the FDA. They will alter > the color and the side of the opening. Once the orthotist receives > the helmet from Florida it may be finished or unfinished. We usually > receive them unfinished because there are usually several > modifications necessary. Thus the orthotist has the freedom to > increase the size of the opening on the top of the helmet, making > them all look different in appearance. > > If the physician has specific requests in the manufacturing or > fitting of the helmet, he certainly has the authority to make them. > > > I'm not exactly sure if that clarifies it for you, but I thought it > might help you feel more comfortable with your ortho. (Now I will > get teased because everyone knows I had a HUGE crush on my ortho!) > > Be sure to get extra snuggle time in with Kai's little noggin and let > us know when he gets fitted for his band! > > Niki > Kaylie & Danny (STAR grads) > Phila., PA > > > --- In Plagiocephaly@y..., " kaneko1232002 " <kaneko1232002@y...> wrote: > > Hi, everyone, it's been maybe a few weeks since i've been on here, > > I'm from Columbia MO and my 6 mo. old son, Kai(pronounced > > like tie) has mild tort and mod-severe plagiocephaly. We went for > > our casting for a Starband last Tue. and it went really well, our > > orthotist used a fiberglass roll to cast, it was really quick and > > lots easier and neater than what I thought after seeing the trad. > > casting method on the net. He hasn't done too many posit. bands at > > this job, but apparently did before this. He does mostly > postsurgical > > bands that he himself makes. He says he has more success when he > > modifies the mold himself, instead of sending it to the company to > > modify when they make the helmet. He doesn't take measurements > before > > or during, he said he keeps the mold for a few months, but can't > keep > > it for the whole process. He goes mainly by looking, not > > measurements. Is this unusual, or worrisome? he seems reliable, > very > > easy to talk to and seems to be knowledgeable. He stated that Kai's > > head is in the upper 30% as far as severity goes, that's why I > called > > it mod-severe, or maybe that's severe. He said he would probably > have > > to wear the helmet about 6 mo. or more, I was disappointed as the > > time on the starband site says median of 3-5mo. or something, but > as > > I read thru the emails, I see it seems to really vary. He said it > > would be a little harder because Kai's head is kind of short to the > > peak of his head from the forehead, is that brachy? We have another > > week or so until we get the helmet, I'm wondering about the > looseness > > everyone talks about, guess I'll find out. By the way, if anyone > > breastfeeds, do you take the helmet off while doing so? Our > orthotist > > mentioned taking the helmet off every 4 hrs for 20-40 min. at least > > until the redness disappeared, I thought it was supposed to be on > for > > 23 hrs? Probably will have more questions in a short time, it > almost > > seems like this was all a nightmare, because we don't have the > helmet > > yet and life goes on as usual. We are doing the two exercises the > Dr. > > recommended for his tort and he's doing better with those. Well > I'll > > write soon, thanks for listening Kaneko > > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 so glad the casting is done and Kai did so well. I have to laugh at the Furby story we have one of those in our house but it did not last long- (who is 14 months) was mad at it for interrupting his tape I think so he threw it on the floor every time it spoke it went from speaking English to some weird alien language and then finally broke-no more furby! Although I like your story better. Keep us posted and good luck! Beck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi Ok, let me try this again, I already replied to yoru email at 9 am, which was like 9 hrs ago, so evidentally it's been lost in land (ugg!). Of course it was a longer reply that I sent! I see you've gotten some good responses already from others. When my daughter had her STARband they never took any measurements of her. I suggest taking at least bi-weekly photos of Kai to be sure you're seeing improvements. It is so hard to remember what their head looked like even one wk ago in the band. The photos will be of good source to you over the next few mos to monitor his head. As for the time off with the band, most orthotists suggest one hour on on hour off during the first few days to a week - after that they say 23 hrs on straight one hour off (as long as there aren't any red spots). The time a child spends in a band does vary. It depends on severity, age, growth spurts. Kai could be done in 4 mos., but he could be done in 6, it's so hard to predict. I hope this post shows up! Now my other reply will probably re- appear from the ghosts of land & contradict everything I said earlier hehe. I'm glad the casting is done & it went smooth. Let us know when it's in. Debbie Abby's mom DOCGrad MI > Hi, everyone, it's been maybe a few weeks since i've been on here, > I'm from Columbia MO and my 6 mo. old son, Kai(pronounced > like tie) has mild tort and mod-severe plagiocephaly. We went for > our casting for a Starband last Tue. and it went really well, our > orthotist used a fiberglass roll to cast, it was really quick and > lots easier and neater than what I thought after seeing the trad. > casting method on the net. He hasn't done too many posit. bands at > this job, but apparently did before this. He does mostly postsurgical > bands that he himself makes. He says he has more success when he > modifies the mold himself, instead of sending it to the company to > modify when they make the helmet. He doesn't take measurements before > or during, he said he keeps the mold for a few months, but can't keep > it for the whole process. He goes mainly by looking, not > measurements. Is this unusual, or worrisome? he seems reliable, very > easy to talk to and seems to be knowledgeable. He stated that Kai's > head is in the upper 30% as far as severity goes, that's why I called > it mod-severe, or maybe that's severe. He said he would probably have > to wear the helmet about 6 mo. or more, I was disappointed as the > time on the starband site says median of 3-5mo. or something, but as > I read thru the emails, I see it seems to really vary. He said it > would be a little harder because Kai's head is kind of short to the > peak of his head from the forehead, is that brachy? We have another > week or so until we get the helmet, I'm wondering about the looseness > everyone talks about, guess I'll find out. By the way, if anyone > breastfeeds, do you take the helmet off while doing so? Our orthotist > mentioned taking the helmet off every 4 hrs for 20-40 min. at least > until the redness disappeared, I thought it was supposed to be on for > 23 hrs? Probably will have more questions in a short time, it almost > seems like this was all a nightmare, because we don't have the helmet > yet and life goes on as usual. We are doing the two exercises the Dr. > recommended for his tort and he's doing better with those. Well I'll > write soon, thanks for listening Kaneko > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 I hope this post shows up! Now my other reply will probably re- appear from the ghosts of land & contradict everything I said earlier hehe. Sure enough my first post finally showed up like 11 hours after I sent it! Hehehe - silly . I'm glad my 2 responses were pretty much identical though! Debbie Abby's mom MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Oh , that Furby story was great!!!! I got a great laugh out of that one!! Niki Kaylie & Danny (STAR grads) Phila., PA > > > Hi, everyone, it's been maybe a few weeks since i've been on > here, > > > I'm from Columbia MO and my 6 mo. old son, Kai (pronounced > > > like tie) has mild tort and mod-severe plagiocephaly. We went > for > > > our casting for a Starband last Tue. and it went really well, our > > > orthotist used a fiberglass roll to cast, it was really quick and > > > lots easier and neater than what I thought after seeing the trad. > > > casting method on the net. He hasn't done too many posit. bands > at > > > this job, but apparently did before this. He does mostly > > postsurgical > > > bands that he himself makes. He says he has more success when he > > > modifies the mold himself, instead of sending it to the company > to > > > modify when they make the helmet. He doesn't take measurements > > before > > > or during, he said he keeps the mold for a few months, but can't > > keep > > > it for the whole process. He goes mainly by looking, not > > > measurements. Is this unusual, or worrisome? he seems reliable, > > very > > > easy to talk to and seems to be knowledgeable. He stated that > Kai's > > > head is in the upper 30% as far as severity goes, that's why I > > called > > > it mod-severe, or maybe that's severe. He said he would probably > > have > > > to wear the helmet about 6 mo. or more, I was disappointed as the > > > time on the starband site says median of 3-5mo. or something, but > > as > > > I read thru the emails, I see it seems to really vary. He said it > > > would be a little harder because Kai's head is kind of short to > the > > > peak of his head from the forehead, is that brachy? We have > another > > > week or so until we get the helmet, I'm wondering about the > > looseness > > > everyone talks about, guess I'll find out. By the way, if anyone > > > breastfeeds, do you take the helmet off while doing so? Our > > orthotist > > > mentioned taking the helmet off every 4 hrs for 20-40 min. at > least > > > until the redness disappeared, I thought it was supposed to be on > > for > > > 23 hrs? Probably will have more questions in a short time, it > > almost > > > seems like this was all a nightmare, because we don't have the > > helmet > > > yet and life goes on as usual. We are doing the two exercises the > > Dr. > > > recommended for his tort and he's doing better with those. Well > > I'll > > > write soon, thanks for listening Kaneko > > > Columbia MO (mom to Kai) Quote Link to comment Share on other sites More sharing options...
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