Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 I met a woman today with a 15 month old son. This child has completely UNTREATED torticollis! She has been asking her ped about it since he was BORN! She was repeatedly told he was fine, don't worry, etc. He also has moderate plagio. She is low income and in an HMO. Since the same thing happened to my son, I'm steamed on her behalf. My son is okay because I have a computer, but she doesn't. She asked me all kinds of questions and asked me to look at her son. I saw pics of him and clearly he's had the tort since birth and the plagio since shortly after that. So...I told her I would try to find her a better doctor within her healthcare system and would give her whatever info I had. Anyone in Seattle with advice? She can get a referral to PT at Children's (if she can't I'll help her) but if she wants a helmet she'd better move fast. So...she's working a couple of jobs, at least, but she'd have to pay out of pocket for a helmet and drive to Portland every couple of weeks (if she goes with Hangar). In my opinion the plagio is moderate, and if it were my child obviously I'd band him. But he isn't my child and I'm not sure what to say. I don't want to encourage her to get a band if she can't afford it. I sure don't want to make her feel bad about the child's head if she can't do anything about it. I also don't want to lie and say I think he's normal. What do I do? Anyone? Thanks! I'm going to post this on the torticollis board, too. , 19 mos, tort, plagio, DOC Band 5/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 , Do you know if her specific HMO exludes cranial orthoses since you mention she'd have to pay out of pocket? Which HMO is it? I don't have much to offer in the way of information, but did find this link on the FACES website that provides some ideas on how to research the financial end of things. Maybe this list will provide some ideas. The National Craniofacial Association: How do I pay the bills? http://www.faces-cranio.org/Paying.htm I wish I could be of more help - I really hate to hear about her ped giving the ole' brush-off about both plagio and tort, what a complete disappointment. At 15 months, she'll want to go with an active band, I agree. I think the Hanger Cranial Band is still expensive and around $1000-$1500, but I don't know about the cost in Portland specifically. I wonder if they have a payment plan or something like that? Christie (Mom to Repo'd Remy) --- In Plagiocephaly , " tortibaby " <sugrill@j...> wrote: > I met a woman today with a 15 month old son. This child has > completely UNTREATED torticollis! She has been asking her ped about > it since he was BORN! She was repeatedly told he was fine, don't > worry, etc. He also has moderate plagio. > > She is low income and in an HMO. Since the same thing happened to my > son, I'm steamed on her behalf. My son is okay because I have a > computer, but she doesn't. She asked me all kinds of questions and > asked me to look at her son. I saw pics of him and clearly he's had > the tort since birth and the plagio since shortly after that. > > So...I told her I would try to find her a better doctor within her > healthcare system and would give her whatever info I had. Anyone in > Seattle with advice? She can get a referral to PT at Children's (if > she can't I'll help her) but if she wants a helmet she'd better move > fast. > > So...she's working a couple of jobs, at least, but she'd have to pay > out of pocket for a helmet and drive to Portland every couple of > weeks (if she goes with Hangar). In my opinion the plagio is > moderate, and if it were my child obviously I'd band him. But he > isn't my child and I'm not sure what to say. I don't want to > encourage her to get a band if she can't afford it. I sure don't want > to make her feel bad about the child's head if she can't do anything > about it. I also don't want to lie and say I think he's normal. > > What do I do? Anyone? Thanks! I'm going to post this on the > torticollis board, too. > > > , 19 mos, tort, plagio, DOC Band 5/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi - Your email post was very upsetting. I feel so bad for your new " friend " and 15 month old. I cannot believe the ignorance of the Ped. she had. I would look into a malpractice suit. A lot of Lawyers will give free consultations. But besides that, I would recommend her to see the doctors your son is going too. If they don't take her insurance, ask them for another doctor in you area who has a good reputation or call the hospital were you had your child and see who they recommend. I don't live in Seattle, but I am sure someone will chime in and give you some wonderful information on PT. , it is very hard to give advise to mother's. I was asked the same thing before. I just put it back on their lap. I say, " It is up to you mom. You have to make that decision. I don't want to sway you, but I banded my child because I know self esteem is extremely important. I could not live with the could haves or should haves. " (that plants a seed). I would definitely tell her she needs him to get PT because of proof that it can cause migraines, TMJ, and other problems. What a sad state of affairs. Does the father have any involvement or any family members who can help with $$? Does she go to a church- where there is support and help for these sort of things. I hate to hear of a single mom struggling. I wish I had Oprah's money- women in this country in that situation should be taken care of. I will say a little prayer for them. You are a blessing to her and her son- it is wonderful what you are doing! Krissy ph's mom Starband 4/28/04 Palm Harbor, Fl On Jul 9, 2004, at 9:32 PM, tortibaby wrote: > I met a woman today with a 15 month old son. This child has > completely UNTREATED torticollis! She has been asking her ped about > it since he was BORN! She was repeatedly told he was fine, don't > worry, etc. He also has moderate plagio. > > She is low income and in an HMO. Since the same thing happened to my > son, I'm steamed on her behalf. My son is okay because I have a > computer, but she doesn't. She asked me all kinds of questions and > asked me to look at her son. I saw pics of him and clearly he's had > the tort since birth and the plagio since shortly after that. > > So...I told her I would try to find her a better doctor within her > healthcare system and would give her whatever info I had. Anyone in > Seattle with advice? She can get a referral to PT at Children's (if > she can't I'll help her) but if she wants a helmet she'd better move > fast. > > So...she's working a couple of jobs, at least, but she'd have to pay > out of pocket for a helmet and drive to Portland every couple of > weeks (if she goes with Hangar). In my opinion the plagio is > moderate, and if it were my child obviously I'd band him. But he > isn't my child and I'm not sure what to say. I don't want to > encourage her to get a band if she can't afford it. I sure don't want > to make her feel bad about the child's head if she can't do anything > about it. I also don't want to lie and say I think he's normal. > > What do I do? Anyone? Thanks! I'm going to post this on the > torticollis board, too. > > > , 19 mos, tort, plagio, DOC Band 5/7 > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Thanks, Krissy. Yep, I was thinking malpractice, too. This woman is single and poor, and I have a suspicion that's why she got screwed. The same thing would have happened to my son had I not had the good luck to be educated here and to have a computer. And to have a big loud mouth. I got so much support and help for from friends and you guys that I'd like to pay it forward. I can't send her to my docs, because they are ignorant too. I found a lovely ped who is willing to follow my lead, but from what I understand, she isn't very experienced with tort or plagio, either. I really like her, but I just plan to do all the research into anything wrong with my son from now on. I'll never trust another doctor. This woman needs someone who already knows about tort, because she can't do her own research without a computer and some time. She's working a couple of jobs and raising her son. I will look into the Hangar option Diane mentioned and get back to this Mom. I think the biggest deal is the tort right now, though. He hasn't had one stretch in 15 months! He has terrible reflux and isn't using one arm. I gotta wonder how many other babies out there are like this. Ooh, that's a good idea about asking the hospital about tort peds. Thanks. > > > I met a woman today with a 15 month old son. This child has > > completely UNTREATED torticollis! She has been asking her ped about > > it since he was BORN! She was repeatedly told he was fine, don't > > worry, etc. He also has moderate plagio. > > > > She is low income and in an HMO. Since the same thing happened to my > > son, I'm steamed on her behalf. My son is okay because I have a > > computer, but she doesn't. She asked me all kinds of questions and > > asked me to look at her son. I saw pics of him and clearly he's had > > the tort since birth and the plagio since shortly after that. > > > > So...I told her I would try to find her a better doctor within her > > healthcare system and would give her whatever info I had. Anyone in > > Seattle with advice? She can get a referral to PT at Children's (if > > she can't I'll help her) but if she wants a helmet she'd better move > > fast. > > > > So...she's working a couple of jobs, at least, but she'd have to pay > > out of pocket for a helmet and drive to Portland every couple of > > weeks (if she goes with Hangar). In my opinion the plagio is > > moderate, and if it were my child obviously I'd band him. But he > > isn't my child and I'm not sure what to say. I don't want to > > encourage her to get a band if she can't afford it. I sure don't want > > to make her feel bad about the child's head if she can't do anything > > about it. I also don't want to lie and say I think he's normal. > > > > What do I do? Anyone? Thanks! I'm going to post this on the > > torticollis board, too. > > > > > > , 19 mos, tort, plagio, DOC Band 5/7 > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
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