Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Hello & Welcome, You are in the right place for info and support. I am not in California but i'm sure there are alot of members who are. We were in the same boat as you but when I brought the info to my Ped. he was grateful and right away got us rolling towards a helmet for Bri. You could take your pedi some of the info. you can print off of this site and ask him to look it over and also to tell you exactly why he dosn't want to have will seen by a specialist to see if a helmet or band is needed. Did he tell you he wanted you to try repositioning treatment first? If he still gives you problems I would get a new Dr. and insist on seeing a specialist. You are the mommy and you know what is best for your child just by instinct. Hope this helped some, April Mommy to Bri and Mandy > My son is 4 mos. old. and has just been diagnosed with plagio. > However his Dr. is not concerned and states he will " outgow it " . I am > afraid that the condition will only worsen. The back of his head is > flat, and his forehead is starting to bulge out. I live in Southern > Calif. and would like a 2nd opinion, but I dont know were to find a > specialist. I am afraid, and I dont know were to turn. Please help. > > Thank you > Wills Mom > Wsull37449@ao Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Hi, I live in San Diego. I don't know if you are in Los Angeles or further south near me. We saw Kaweski, a Plastic Surgeon with specialty training in craniofacial sugery. She is the one that wrote us the scrip for the DOC band. Her number is 858-974-9876. We also got an opinion from a pediatric neurosurgeon (from Children's Hospital) named . He actually told us to wait 6 more weeks and come back and see him. We didn't feel we had the luxury of time, as got his DOC band when he was 8 months old. I have also heard of Cohen and Ralph Holmes. Both of them are Cranialfacial Surgeons. We had also gotten recommended to them by one of my husband's colleagues (my husband is a physician), but at that point, we had enough opinions and a scrip for the DOC band, so we opted to just go for it already. Ironically, Cohen and Holmes lease office space to Cranial Technologies (providers of the DOC band) until CT gets their own offices. Their number is 877-336- 5900. It's great that you are pursuing things so early. Our pediatrician told us at 4 and 6 months that everything would be fine....... Good luck :-) Debbie Mom to (DOC banded 2/23/01) > My son is 4 mos. old. and has just been diagnosed with plagio. > However his Dr. is not concerned and states he will " outgow it " . I am > afraid that the condition will only worsen. The back of his head is > flat, and his forehead is starting to bulge out. I live in Southern > Calif. and would like a 2nd opinion, but I dont know were to find a > specialist. I am afraid, and I dont know were to turn. Please help. > > Thank you > Wills Mom > Wsull37449@ao Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Check our Cranial Technologies web site. They produce the DOC band and have offices in So Cal. http://www.cranialtech.com/ Good luck! Kimberley > My son is 4 mos. old. and has just been diagnosed with plagio. > However his Dr. is not concerned and states he will " outgow it " . I am > afraid that the condition will only worsen. The back of his head is > flat, and his forehead is starting to bulge out. I live in Southern > Calif. and would like a 2nd opinion, but I dont know were to find a > specialist. I am afraid, and I dont know were to turn. Please help. > > Thank you > Wills Mom > Wsull37449@ao Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Dori: We heard the same thing from our son's pediatrician at his 2 mo appt, but he did caution us that if it got worse, he would need a helmet. However, he didn't tell us what to do. And due to torticollis, the problem only got worse. Positioning didn't work either. At his 4 mo appt, we got pushed onto the nurse practioner [the ped was out]. SHE told us to get to a cranial-facial specialist, and got us going in the right direction. Our son was fitted with a helmet on 2/8/01--and the difference is amazing. There are many types of helmets/bands out there, and from what our dr told us, there isn't a big difference. Others might disagree. We've had good luck with ours, called the OPI band. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 Welcome to the group! > My son is 4 mos. old. and has just been diagnosed with plagio. > However his Dr. is not concerned and states he will " outgow it " . I am > afraid that the condition will only worsen. The back of his head is > flat, and his forehead is starting to bulge out. I live in Southern > Calif. and would like a 2nd opinion, but I dont know were to find a > specialist. I am afraid, and I dont know were to turn. Please help. > > Thank you > Wills Mom > Wsull37449@ao Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 It definitely sounds to me like your child has phenol issues, especially the sleep issues you describe. Here is my information on that, including an " offending food " list. http://home.pacbell.net/cscomp/phenol.htm Enzymes do help some children with phenol issues, but not all. So you would have to give it a try for your own son. My link above also gives other ideas for you to consider. The enzyme that I understand is most helpful for phenol issues is Zyme Prime, here is a link on that one, as well as another one that helps with gluten/casein issues. http://www.houstonni.com/ > Hello everyone. My name is Toni and I have a 3yo son who has been > diagnoised with sensory intergration dysfuction. He was not > diagnoisd with autisim because he as decent social skills; but he > still has major issues (not sleeping, not transitioning without a > fight, won't poop in potty, irregular stools, etc.). He is high risk > ADHD. I have always felt like his behavior corolated to his food, but > the DR. said I was crazy. He has never had a typical allergic > reaction, but gets really hyper, won't talk to people, has tantrums, > etc. These have gotten better with age, but still keeps him from > being " normal. " He gets OT and ST, but otherwise seems pretty normal > to the untrained eye. > > I am looking for some advice. I've read the folders, but they don't > answer all my questions. I truly think artificial colorings affect > his behavior, but I'm not convinced that milk or gulten bothers him. > He won't drink milk, but loves cheese and yogurt. If he eats too many > chic. nuggets from Burger King I've also noticed a problem. And don't > get me started on Twix yogurt - it makes him crazy. > > Should I start him on enzymes? I hate to put him on a restrictive > diet since he will barely eat anyway. He is a smart, sweet and really > cute kid. Everyone likes him, but he can be a real pain. > > Oh yeah. If I could change only one thing, it would be his sleeping > patterns. He has been on melatonin with no results and Clonidine > (which made him like a zombie the next day). It seems like he > physically cannot sleep all night and has terrible nightmares. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Toni, Your little guy sounds a lot like mine. Mine is 7 now. He has a lot of sensory issues. He started school and did not succeed . A special ed teacher gave me a book on special diets. I thought his biggest problem was ADHD so I thought it was worth a shot. So I tried it. He had never had any reactions to anything as far as I could tell. Well the difference is incredible. He can actually sit still. But the thing that was like your little guy is this . My son told me for years that he had a nightmare everynight. He was alwys climbing in bed with me. I thought he was exagerating. Well shortly after he started the gfcf diet he said " I don't have nightmares anymore " Totall unpromted. We weren't discussing it and I didn't ask a question. So it might be worth a shot to try that or the enzymes. We are just starting the enzymes now to help with things I haven't figured out are a problem yet. Anyway good luck. Donna C Quote Link to comment Share on other sites More sharing options...
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