Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Welcome to the group, I have a 12 yo son who was not diagnosed until he was 9 yo even though we knew it. This is a great group to read stuff and you will see a lot of people are in the same boat. I'm in NJ, so we are almost neighbors. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 <<After reading about enzymes I > want to order the products and start him on it as soon as possible. > The problem is I don't know where to start. HELP! Here is my site section, with links for information and suppliers. I used Houston Nutraceuticals with much success http://www.danasview.net/parent3.htm#supplements > Do I need to put him on the diet first or can a start gradually > adding enzymes to his meals? How much and which one do I start giving > him? You don't need to do diet first. In fact, many people don't need to do diet at all, altho some kids do need diet also. >>He does not have any langauge other than maybe > four or five words. What my son needed for language is written here http://www.danasview.net/issues.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 , please ask for a referral to a rheumatologist. They are best able to diagnose and treat PA (which it sure sounds like you have!) and they are accustomed to advocating for you with the insurance companies also. Off topic, my dad was a long-haul trucker back in the day before people owned their own rigs. He loved it his life! regards, sherry z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hello and welcome to the group. I'm glad Robbie is working on rounding out his head. My daughter had heat rash and it looked like a red rash (small spots) vs " raw " . She had it in her sideburn area and it cleared up with hydrocortizone. One sign that it is something else is if the hydrocortizone doesn't seem to help. Also if you think it is from heat make an effort to keep him cooler and see if it helps. Let us know what works. -christine sydney 2 yrs starband grad > > Hi, I just wanted to introduce myself after lurking for a couple weeks. I've > found the list to be a great resource as I came to terms with banding my > son! My 5.5 mo son Robbie got his DOCBand last Tuesday. > > I spent 24 in labor with him, including 4 hours of hard pushing where we > could only get his ear to crown as the rest of his head rammed my pelvis. I > ended up with a c-section, but no one was really surprised when he had a > pretty bad flat spot! I'm pretty sure he also had torticollis, but > repositioning seemed to mostly correct that after the first couple weeks (he > still prefers one side more often, but has finally started choosing to > sleep facing the less-favored side - yay, no more sneaking in to turn him!) > > When tummy time and repositioning hadn't corrected the lopsidedness by his 4 > month appt, though, we were diagnosed with plagio and referred for the band, > and while our ped said it was purely cosmetic, he measured at 15mm asymetry > - yowsa! Needless to say, we went ahead with it. Four days in and he's > adjusting fairly well, though I have a couple questions though. > > Red spots - he's getting red lines on his cheeks from the ear pieces. Our OT > said that shouldn't be a pressure point, so she recommended hydrocortisone > for heat rash, but that really doesn't seem to help. I left the band off for > a couple hours yesterday when one side started looking almost raw, and > fortunately the marks faded, so I think it was pressure, right? He wore the > band all night and woke up with some mild redness again, but I felt > comfortable sending him to daycare with a warning that if it looks raw wen > they took it off for his neck exercises, they should call me. We go for our > first adjustment tomorrow and I'll ask then, but wanted to know if thers had > this experience (i.e., is it really just heat rash and I'm overreacting?) > > Painting - I painted his band yesterday with non-toxic acrylic paint, then > added stickers and a couple coats of Mod Podge, but noticed when he woke up > this morning that it was already starting to peel. Did I miss a step, or is > this par for the course? > > Thanks again - I'm so glad this group is here! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Welcome- My son also wears a DOCBand and I too was told that any redness in the side-burn area should be strictly heat rash since there are no pressure points there that would cause pressure spots. However, definitely ask your therapist about that when you go for the one- week check tomorrow. As far as the painting is concerned, yeah, I'd say that's par for the course. I paint my son's helmet and it looks so nice, and then the next morning, there's a nick in it from something he did while in his crib. If I'm being really anal, I'll touch it up a few times, just fill in the spots with paint and cover it again in a couple more layers of mod podge. But eventually, I just give up trying. I repaint it every 3 weeks cause that's as long as I can stand it. How many coats of paint did you put on it? I think if the layers are too thin, it might be easier to peel, also if there are too many layers, it can chip easier. I use about 4-5 coats of paint, then 2 coats of mod podge to start, and then touch up with a couple more coats of mod podge and it holds pretty well considering. My son is 21 months old though, so trying to keep his helmet nick free is impossible, since he's always trying to climb under something or digging his head into the floor for now real reason, crazy things that toddlers do. So I'll just keep painting it! Hope the check goes well tomorrow. Please keep us posted on Robbie's progress! Jake-21m (tort resolved/rt plagio/DOCBand #2 1 week) Jordan-4 > > Hi, I just wanted to introduce myself after lurking for a couple weeks. I've > found the list to be a great resource as I came to terms with banding my > son! My 5.5 mo son Robbie got his DOCBand last Tuesday. > > I spent 24 in labor with him, including 4 hours of hard pushing where we > could only get his ear to crown as the rest of his head rammed my pelvis. I > ended up with a c-section, but no one was really surprised when he had a > pretty bad flat spot! I'm pretty sure he also had torticollis, but > repositioning seemed to mostly correct that after the first couple weeks (he > still prefers one side more often, but has finally started choosing to > sleep facing the less-favored side - yay, no more sneaking in to turn him!) > > When tummy time and repositioning hadn't corrected the lopsidedness by his 4 > month appt, though, we were diagnosed with plagio and referred for the band, > and while our ped said it was purely cosmetic, he measured at 15mm asymetry > - yowsa! Needless to say, we went ahead with it. Four days in and he's > adjusting fairly well, though I have a couple questions though. > > Red spots - he's getting red lines on his cheeks from the ear pieces. Our OT > said that shouldn't be a pressure point, so she recommended hydrocortisone > for heat rash, but that really doesn't seem to help. I left the band off for > a couple hours yesterday when one side started looking almost raw, and > fortunately the marks faded, so I think it was pressure, right? He wore the > band all night and woke up with some mild redness again, but I felt > comfortable sending him to daycare with a warning that if it looks raw wen > they took it off for his neck exercises, they should call me. We go for our > first adjustment tomorrow and I'll ask then, but wanted to know if thers had > this experience (i.e., is it really just heat rash and I'm overreacting?) > > Painting - I painted his band yesterday with non-toxic acrylic paint, then > added stickers and a couple coats of Mod Podge, but noticed when he woke up > this morning that it was already starting to peel. Did I miss a step, or is > this par for the course? > > Thanks again - I'm so glad this group is here! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 To keep paint from peeling – I put a couple layers of varnish (found in the same place as acrylic paint) and that has stopped all the peeling. It has been 2 weeks and hasn’t peeled at all. Jackie (Ben, 7 mo, 2 wks in DOC band, tort corrected, rt. Plagio) Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi Jackie- Just a couple quick questions, can you give us the exact name of the varnish so we know what to look for? Is it non-toxic and fast drying like mod podge? And do you know if you'll be able to peel it all off when/if you do want to repaint it? I like the idea of keeping it from peeling, but I also want the freedom to repaint when I want. And I don't think many of us have heard of this particular varnish before, so any more info you can share would be greatly appreciated by many. Thanks! Jake-21m (tort resolved/rt plagio/DOCBand #2 1 week) Jordan-4 > > To keep paint from peeling - I put a couple layers of varnish (found in the > same place as acrylic paint) and that has stopped all the peeling. It has > been 2 weeks and hasn't peeled at all. > > > > Jackie > > (Ben, 7 mo, 2 wks in DOC band, tort corrected, rt. Plagio) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I had painted my son's band with Folk Art Acrylic paint and when he woke up the next morning, it was already peeling from him sleeping on it. So, I tried the varnish and it worked great! I got it at s. The brand I got was Delta Ceramcoat. I got the " Matte Interior Varnish " . It is waterbased, just like the acrylic paints, so it will come off if you wanted to repaint. It has been 2 weeks and I have not had any problems with it peeling on its own. However, I am starting to see some uneveness in the varnish and feel like I am going to need to put a few more layers on every once in a while to keep it looking good and protecting the paint. I had done some searches online for tips to prevent peeling on the helmets/bands and this seemed to be a common answer. One thing that a lot of people said is to make sure you find a Varnish - not Sealer. It seemed like the Sealer didn't really do anything to help. But, I didn't try it myself. Hope this helps! Jackie (Ben, 7 mo, 2 wks in DOC band, tort corrected, rt. Plagio) > > > > To keep paint from peeling - I put a couple layers of varnish > (found in the > > same place as acrylic paint) and that has stopped all the > peeling. It has > > been 2 weeks and hasn't peeled at all. > > > > > > > > Jackie > > > > (Ben, 7 mo, 2 wks in DOC band, tort corrected, rt. Plagio) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Try looking for an ABA therapist in your area. "Applied Behavior Analysis." They usually work with kids who have autism in home programs but they also can help you set up some behavior plans that might help. You really need to set a plan and work hard at it. I mean to say, it can't all be fixed at once as it took all these years to be this bad. So you need to pick one or two things to work on at a time and you will have to walk her through it, step by step. I'm sure it is overwhelming to you! You could also check into your local developmental disability program - every state seems to have it's own name for these programs. But they might offer an adult living type program that you could sign her up for. My oldest (19 yo w/HFA) has been doing his laundry since he was about 15 yo, I think. I should credit that to Liz here on our group. She said she had her kids doing their own laundry and I thought, "Why not?" and so I started. Also, my ds grew tired of waiting for me to do his laundry so it all worked out for everyone. :-) Now my 16 yo dd does her own laundry as well. But it is a process and I really recommend you start with one thing at a time, teach her step by step exactly what you want, slowly pull back as she starts taking over and REWARD REWARD REWARD progress. Also, get rid of whatever you can. If she can't manage her own stuff, get rid of as much as possible and save yourself a lot of grief. RoxannaAutism Happens ( ) New Member Hi Everyone:I am new to this group and seeking support. I have an 18 year old daughter with PDD and ADHD that we home schooled. She graduated from high school one year early, but is unable to pass most tests. She tested out at a very low IQ, but is very bright in some areas.I am going stark raving mad now and have been for the past several years. She is very forgetful, doesn't lift a finger to help out around the house or with the horses, of which we wouldn't have if it weren't for her, and is now attending Jr, College and not doing so well. Iam at my wits end as to how to survive with her at home and what to do about her future.Around the house she creates extreme messes because she never puts anything away, never picks up after herself, but merely throws everything into the floor. Laundry is a nighmare as she cannot seem to distinguish between toilet paper and towels! Her habits in the past have been to fill the toilet with toilet paper and other bodily excrement until it is overflowing and never flushes. In response, we had automatic flushers installed, which she covers up and doesn't use. The flushing has become somewhat better, but not cured. She still urinates in her bed often and more so when I loose it because of her lying to me. By the way, she is a pathological and incompetent liar, frequently being found out, but continuing to lie as to avoid getting in trouble.My husband works more than full time and I have raised my daughter pretty much alone. He has in the last few years been taking her to ball games and has game night where friends come over and play board games, which my daughter loves. However, I am beside myself as to how to live in this world with someone as disorganized and mess creating and lying as my daughter. By the way, my husband and I are still married but live separately because my daughter and I have four horses and he was tired of paying boarding fees. So he bought us a farm about 45 minutes away from where he lives. He didn't want to relocate because he didn't want to commute. It is just as well, because he is very AHDH and leaves messes everywhere, and I was very cranky picking up after the two of them...not to mention their constant talking!I love my daughter and I love my husband, but they both are taking years off my life! My house is a mess and dirtier than I like to admit because at 61, I just don't have the energy anymore to continually pick up and clean up after even one other person. Thes messes take all of the energy out of me just looking at them. And I have a farm with four horses and an acre of property, not to mention the pasture of 2 1/2 acres to keep up. I feel as though things are falling down around me and all I can do is either drink or sleep!The one saving grace I have is that I have met two women to go out riding with about two times a week...this is my therapy. To go out on my horse into the mountains is absolute Nirvana! I live for riding my horse.The problem is that I really need to do something to get my daughter set up for her own life and I am not sure how to do that. I thought that perhaps she could get a certificate as a library technician, but the requirements have several academic classes that seem to be beyond her reach. This not only with her inability to seem to understand what is required to keep a house and clean up after oneself is overwhelming to me. And, of course, being a teenager, she won't listen to anything I say...I am the enemy!Does anyone else on the planet have any problems similar to mine? If so, what do you do?????Thanks for listening. I really need to vent and find something to do to keep my sanity. No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.1/1468 - Release Date: 5/26/2008 3:23 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi , I have been on a ton of different NSAIDs. You just have to try them and see which one will work for you. My body reacts very strangely to drugs. The ones which are not supposed to cause GI upset really bothered me. Celebrex is in that category. Arthrotec is an NSAID with another drug combined that is supposed to take care of any GI symptoms. That one made me dizzy. Now I am on Clinoril, which is yet another category of NSAID. Some people do have GI symptoms with it but I have not had any. It is the only one that works for me without side effects. If you do try different meds, do wait until your next appointment if you have bothersome side effects. Go ahead and call the doctor and let them know so you can try something else sooner. You might also consider not getting a full months worth of the meds until you see if they will work for you. Are you seeing a rheumatologist? If not, please try to get a referral and get an appointment. They are really the best for auto- immune arthritis. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Welcome to the group. You should have a good perspective to make a great teacher! > > I am 30, female, and I have high functioning autism. > > I am also a college student in Early Childhood Education, with a focus on Special Needs, and a strong desire to work directly with those with Autism Spectrum Disorder. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Hi You don't HAVE to start him on a diet in order to take enzymes but many parents have had much success with diet. But you can just do the enzymes and see how that works for you. There are a lot of products to take out there. If you would like I can send you some information and samples. You can visit enzymedica.com to choose some samples you think would be best for your son. Or you can just ask me. EACH child is different and each parent is different. Some want to start low and slow as recommended by DeFelice & Enzymedica and others want to give the most potent. Each situation is different. But if you want information and samples please just let me know. Feel free to contact me with anything. Alessandra Enzymedica's Education Department enzymedica.com > > Hi I have just read about enzymes and so many wonderful successes > from being on them. I have a 5yr who was diagnosed with autism two > years ago. I have been scared to death to put him on the GFCF diet. > He is so stubborn it is unbelievable. After reading about enzymes I > want to order the products and start him on it as soon as possible. > The problem is I don't know where to start. HELP! > > Do I need to put him on the diet first or can a start gradually > adding enzymes to his meals? How much and which one do I start giving > him? > > Let me tell you a little bit about my son and maybe that can help > point me in the right direction. Dylan is very loving and has a > wonderful personality. He does not have any langauge other than maybe > four or five words. He is a very picky eater and has just started > touching new foods. He does have socialization problems with other > kids but adults he has no problem at all no matter how many are > around. I just know in my heart and soul that once I get him talking > so many things will change and we will be well on our way to > recovering. > > I have heard and read so many great success stories now I want my son > to be one of them. Please HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Check out the Rath vitamin protocol. Dr. Rath holds a patent on it. The enzyme MMP-?, one of a family of enzymes travels through the connective tissue by digesting the collagen ahead of it. Dr. Rath's concoction blocks the production of these enzymes so they can't leave their current home. This effectively halts metastasis. http://www4.dr-rath-foundation.org/PHARMACEUTICAL_BUSINESS/health_movement_again\ st_codex/health_movement16.htm there is a lot of criticism about this so don't rely on it too heavily. Pay attention to hygiene as it is directly related to the production of cancers. Dr. Shinya has a video of colonoscopys where he shows to breast cancers and the associated colons. Its shocking! http://video.google.com/videosearch?q=hiromi+shinya & hl=en & sitesearch=# " Lucy Rudnicka " wrote: >I just joined your group. I've been diagnosed with breast cancer ( not metastasized) a month ago. After a couple of lumpectomies, I'm going the alternative route, learning as much as I can to cure myself. Any good info will be appreciated. > > Patient54321 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Just some basics, of the top of my head: 1) See file (in Files section of the group) on Intravenous Vitamin C (and other files). 2) http://low dose naltrexone.org 3) Classic book: " How to Fight Cancer and Win " , by L. Fischer. 4) http://cancertutor.com 5) http://survivecancerfoundation.org 6) Ask questions here about anything and everything. Best, RB > > Hi, > > > > I just joined your group. I've been diagnosed with breast cancer ( not > metastasized) a month ago. After a couple of lumpectomies, I'm going the > alternative route, learning as much as I can to cure myself. Any good info > will be appreciated. > > > > Patient54321 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Lucy, (or should I say, Neighbor) Please call my office (Center for the Study of Natural Oncology) at 858-523-9144. We could meet at the office or the retreat center in Del Mar, or even at the site where we are building a retreat sanctuary along the Cleveland National Forest and overlooking Temecula and the Pachanga Reservation. At 02:54 PM 6/21/2008, you wrote: >Hi, > >I just joined your group. I've been diagnosed with breast cancer ( not >metastasized) a month ago. After a couple of lumpectomies, I'm going the >alternative route, learning as much as I can to cure myself. Any good info >will be appreciated. > >Patient54321 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Hello and welcome to the group. I wish I was down in Boca with you, NY is just not my ideal location. (I spent many a summer vacation in Boca growing up). I would purchase a Britax car seat I have the roundabout and it is great. My son just turned a year old and we have it rear facing but are going to turn it foward after we get back from a planned mid July vacation. I do not want to switch him around before and throw him off. The roundabout goes both ways and is awesome. Britax is the best and an industry leader. Good luck with the band and also with the heat. Keep the car cool before putting him in and try to keep him in the ac as much as possible. I know he will adjust but it could be an issue to start. My son was also a larger baby and we saw great correction from 4 months to 6 months when we treated. Your son is still young so you will also see great results if the ortho is experienced and the product fits correctly. Make sure to check for red spots and dont hesitate to be pushy to get what you need for your child. Going back several times to get a proper fit the first time is what many mothers have had to do. Let us know if you need anything and keep us posted on your progress. Tammy mother to DOC band 10/31-12/31. From: Darling, <darlingd@...>Subject: New MemberPlagiocephaly Date: Friday, June 27, 2008, 11:43 AM Hi All:I actually joined a couple of weeks ago, and already feel better about the journey we are about to start, so thank you!We are down in Boca Raton Florida, and my boy is almost 6 months old. He was born 9 pounds 7 ounces, and continues to be large- now over 22 pounds. Our pediatrician (Barlow) has been great so far, and sent us to Stelnicki at 3 months, who seems fine as well. Understandably, Stelnicki encouraged us to use repositioning at first, but gave us no guidance/ specific information, and did warn us that his size could be a factor (which it is). He spent little time in swings/ carriers etc. We bought a "repositioner" , but the boy is just to big- he would flatten himself out very easily. This continued even when we tried other things to try to get him to sleep on his side etc. At this point, there seems to be mild plagio with somewhat severe brachy. When we returned a few weeks ago, we were again advised to "be conservative" for 2 more months- and, with Barlow's blessing- I asked why- did they really see this issue working itself out? I think that the PA needed to check a manual or something- but she finally responded and admitted that no, it wouldn't, but most parents like to continue "trying".... As a teacher who is actually home until mid-August, I would rather go through this with him as much as possible. So, we are starting the banding process next week. My lovely insurance plan (United) will only cover at Hanger, and my husband, an OT, has had real issues with the local office. Stelnicki is associated with/ owns? Cranial Kids, and we are paying cash (2650) to work with them. The OT was at CT for many years, eventually leaving to work exclusively with Stelnicki. We pick up the band Wednesday. Based upon my reading here, we are getting ready for a sweaty boy! We are replacing his car seat this weekend, since he is already in need of a larger own that will allow for rear-facing placement. Someone here suggested the Roundabout- we were hoping to get suggestions- ideally for something that will be used rear-facing and forward. Also, I noticed some discussion about daycare- and I was wondering how most Moms deal with the band issue. I am guessing that I will be buying more snap-front rompers so that he can be changed if necessary. If anyone has any advice or familiarity with Stelnicki and his office it would be greatly appreciated. Thanks! Darling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 hello, welcome to the group. I am actually from down there, my 1st was delivered at west boca. ANYWAY, my son got his helmet in August in the middle of a heat wave here where we had 16 days of 100+ degree temperatures (and heat indexes over 110) but even still he adjusted to the helmet (sweat wise) in under a week. Though we didnt hang out outside frequently he did have to spend soccer practices outside and stuff like that with his older siblings. We also keep our a/c at 75 so it wasnt hot inside. It doesnt get quite as hot where you are so hopefully he adjusts faster. What kind of band do they use there, a starband? I know some offer a bit less airflow b/c they cover a little more (we had a docband). As for carseats, personally at your sons size, is he tall too? I would get a marathon, it is a few dollars more than the roundabout but longer so you will be able to keep him rearfacing longer. My son was 9 bs 4 oz at birth, 24 lbs at 6 mo old and long to go with it, he outgrew the Roundabout rearfacing before he was 1 (fl law they must rearface till at least 1 yr old and AAP and NHTSA actually recommend they rearface as long as possible), luckily he had a decathalon (basically a marathon with extra pads for a newborn) and was just using the roundabout (his sisters) b/c it was shorter and he was rearfacing so that height made some difference in confiuring our minivan so we just switched him. The marathon will also get rid of the need for a " gap " seat. Gap seat meaning most kids outgrow a convertible carseat forward facing in height before they are 40 lbs but should be in a harness until they are 40 lbs (at least) so many ppl end up having to buy a harnessed booster to use after they outgrow the convertible until they are 40 lbs. The Marathon is taller so you will not have that issue. My son rode in the decathalon (pads removed) with his helmet fine, once he graduated from the band we did add the head pads back for a while b/c I was worried about regression On Fri, Jun 27, 2008 at 7:43 AM, Darling, <darlingd@...> wrote: Hi All:I actually joined a couple of weeks ago, and already feel better about the journey we are about to start, so thank you!We are down in Boca Raton Florida, and my boy is almost 6 months old. He was born 9 pounds 7 ounces, and continues to be large- now over 22 pounds. Our pediatrician (Barlow) has been great so far, and sent us to Stelnicki at 3 months, who seems fine as well. Understandably, Stelnicki encouraged us to use repositioning at first, but gave us no guidance/ specific information, and did warn us that his size could be a factor (which it is). He spent little time in swings/ carriers etc. We bought a " repositioner " , but the boy is just to big- he would flatten himself out very easily. This continued even when we tried other things to try to get him to sleep on his side etc. At this point, there seems to be mild plagio with somewhat severe brachy. When we returned a few weeks ago, we were again advised to " be conservative " for 2 more months- and, with Barlow's blessing- I asked why- did they really see this issue working itself out? I think that the PA needed to check a manual or something- but she finally responded and admitted that no, it wouldn't, but most parents like to continue " trying " ....As a teacher who is actually home until mid-August, I would rather go through this with him as much as possible. So, we are starting the banding process next week. My lovely insurance plan (United) will only cover at Hanger, and my husband, an OT, has had real issues with the local office. Stelnicki is associated with/ owns? Cranial Kids, and we are paying cash (2650) to work with them. The OT was at CT for many years, eventually leaving to work exclusively with Stelnicki. We pick up the band Wednesday. Based upon my reading here, we are getting ready for a sweaty boy! We are replacing his car seat this weekend, since he is already in need of a larger own that will allow for rear-facing placement. Someone here suggested the Roundabout- we were hoping to get suggestions- ideally for something that will be used rear-facing and forward. Also, I noticed some discussion about daycare- and I was wondering how most Moms deal with the band issue. I am guessing that I will be buying more snap-front rompers so that he can be changed if necessary. If anyone has any advice or familiarity with Stelnicki and his office it would be greatly appreciated. Thanks! Darling -- SC SAHM to , , , , and what should we name our baby girl? http://www.babynames.com/namelist/9614412 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 We have the Roundabout and love it. He sits in it fine with his helmet. We went from the infant carrier to the Roundabout just before he was fitted with his band. And have had no problems. We still have it rear facing right now. Jackie (Ben/ tort resolved/rt plagio/DOC Band 4 wks) CAR SEATS Posted by: " cdm11382 " cdm11382@... cdm11382 Fri Jun 27, 2008 8:09 am (PDT) IT IS TIME FOR US TO GET A NEW CARSEAT SINCE DYLAN HAS OUTGROWN HIS INFANT SEAT AND HIS HELMET IS CAUSING HIM TO GET QUITE UNCOMFORTABLE IN IT. I HAVE READ TONS OF REVIEWS AND I THINK WE HAVE DECIDED ON THE BRITAX MARATHON. I WAS JUST WONDERING IF ANYONE HAS THIS ONE. I HAVE READ A LOT ABOUT THE ROUNDABOUT TOO BUT OTHERS HAVE SAID THEY WISHED THEY WOULD HAVE SPENT THE EXTRA MONEY SINCE THE MARATHON IS BIGGER AND WILL LAST LONGER. CHRISSY SAN DIEGO MOM TO DYLAN 7 MONTHS 2 WEEKS STARBAND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 My son has been in the Roundabout for 2 1/2 years now. We just got the Marathon. The difference, the Marathon goes to a higher weight. He's not in the Marathon yet, but I know we'll all be happy with it. I love the Roundabout - it's a breeze with the latch system for quick & easy in/out installation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 It seems like just yesterday I posted my forst question and WOW, time has flown by. First, thanks to everyone who replied - the red marks disappeared after a couple days, and I discovered that several coats of paint/modge podge were ok, though I still get chipping around the edges. Although I really didn't post much, I enjoyed keeping tabs on the posts - it's clearly a bewildering process to everyone when we're new, but then a few weeks in, we're all old pros The amazing thing is that at our 4 week appt Tuesday, our clinician said Robbie had almost grown out of his band already! She said we have probably 2-3 weeks left before there's nothing left for her to scrape away! We've seen a lot of improvement, and she said if it were her son, she'd probably call it quits once he's done with this band. Since he started off with 15mm asymmetry, I wanted to see just how much progress we had before deciding whether or not to do a second band, so I asked her to do measurements. He is now is only off by 5mm. I am SHOCKED that we saw change so quickly, but I guess we caught him just before a growth spurt. I'm really eager to see what the next couple weeks bring! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Wow, congratulations!!!!!!!!!! Re: New member It seems like just yesterday I posted my forst question and WOW, time has flown by. First, thanks to everyone who replied - the red marks disappeared after a couple days, and I discovered that several coats of paint/modge podge were ok, though I still get chipping around the edges. Although I really didn't post much, I enjoyed keeping tabs on the posts - it's clearly a bewildering process to everyone when we're new, but then a few weeks in, we're all old pros The amazing thing is that at our 4 week appt Tuesday, our clinician said Robbie had almost grown out of his band already! She said we have probably 2-3 weeks left before there's nothing left for her to scrape away! We've seen a lot of improvement, and she said if it were her son, she'd probably call it quits once he's done with this band. Since he started off with 15mm asymmetry, I wanted to see just how much progress we had before deciding whether or not to do a second band, so I asked her to do measurements. He is now is only off by 5mm. I am SHOCKED that we saw change so quickly, but I guess we caught him just before a growth spurt. I'm really eager to see what the next couple weeks bring! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Welcome- Glad you have found this group and hope it will be helpful to you. My son also has plagio and did have tort but we resolved that with about 2.5 months of PT starting at 2 months old. The plagio was a different story, however, and he was banded at 17 months old. I'm more familiar with measurements done in mm, but I believe 2.5 cm would convert to 25 mm which would be considered severe. Is that a fair assessment? I have never heard of a P.A.P. Orthosis. What kind of helmet is that? (passive or active). Where are you located? We like to learn as much as I can about the different types of helmets out there, so any additionaly information will be greatly appreciated. Please let us know if you have any questions we can help you with. Good luck! Jake-22m (tort resolved/rt plagio/DOCBand #2 6 weeks) Jordan-4 > > Hi everyone! > I am just joinig for some support for our baby boy that has positional > plagiocephaly and torticollis. > Evan was diagnosed at 4 months and we have been doing Physical Therapy > since that time. His asymmetry was measured at 2.5 cm. He is 6 months > old now and he was just casted for his helmet on Tuesday. He will be > getting a P.A.P. orthosis. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Welcome! This is an amazing group that has helped me through some trying times. My son has been in his Starband for 8 weeks now and all is going smoothly. Don't feel afraid to ask any questions, this group is extremely helpful because everyone has been through the same thing. > > Hi everyone! > I am just joinig for some support for our baby boy that has positional > plagiocephaly and torticollis. > Evan was diagnosed at 4 months and we have been doing Physical Therapy > since that time. His asymmetry was measured at 2.5 cm. He is 6 months > old now and he was just casted for his helmet on Tuesday. He will be > getting a P.A.P. orthosis. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 - I am not sure if the P.A.P. orthosis is active or passive. It is made here in Utah by a company called FitWell (http://www.fit-well.com/). I noticed that the other members from Utah got their helmets there as well. They are the clear acrylic kind, more of a full helmet. Evan's PT measured his difference at 26mm, and the orthotics guy measured it at 23mm. So yes, he is sever. I did get some decent " before " pictures last night & I'll post them later in the photos area and on our blog (roamingjones.blogspot.com). We are still working on the tort. He actually had Botox injections in the affected muscles to paralyze them and make the PT easier. It really helped a lot, though he still hates the PT we do at home. Brittany > > > > Hi everyone! > > I am just joinig for some support for our baby boy that has > positional > > plagiocephaly and torticollis. > > Evan was diagnosed at 4 months and we have been doing Physical > Therapy > > since that time. His asymmetry was measured at 2.5 cm. He is 6 months > > old now and he was just casted for his helmet on Tuesday. He will be > > getting a P.A.P. orthosis. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Hi Sara and welcome to the group. I'm glad to hear that Will is doing so well. What kind of band do you have? My daughter wore a starband in 2006, and I have continued to stay in the group as one of the moderators. There are a lot of really great parents in this group, and it helped me a lot while my daughter was in her band. Also please post a picture of Will in the photos section if you get a chance. -christine sydney 2.5 yrs starband grad > > Hi Everyone! Our son Will is now 7.5 months old and has had a helmet > for his plagiocephaly for 2 months. We actually just recieved his > second helmet today! He grew quite quickly and we had to replace the > first one. He had Torticollis as well. I am so happy with the results > of his helmet so far I can't wait to see how his head looks when he is > finished with the helmet! > > I am not sure why I didn't think of looking on-line for any sort of > support group prior to this, but I think it would be wonderful to have > some other parents to chat with who know what we are going through with > Will. > > Sara > Quote Link to comment Share on other sites More sharing options...
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