Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 If the answers you received at Mercy arent sitting well with you, I would definitely seek another opinion from an ET EDF/Mehta doc. Many parents have been able to get out of state consults by sending their childs info (xrays, photos, medical history summary, etc) I think the important thing here is get a consult from a doc that believes in ET w/ EDF and has a good size case load of PIS patients..Please keep us posted and let us know if we can help. HRH > Thank you for the replies and suggestions! We saw an ortho at Children's > Mercy General (I hesitate to say names because I do not have a good thing > to say about him). All of my son's doctors are Children's Mercy related... > which is why I hesitate to get a second opinion at Children's Mercy. I > have heard a couple people mention KU Med Center as a place nearby to try > also. We are also working with an early intervention program through the > state and have an occupational therapist and physical therapist visit the > house once a week. He is also severly near sighted with an astigmatism and > has worn glasses for about 4 months now. We have had so appointments and > doctors visit I just feel so overwhelmed. Genetics clinic is next week, > and we are still waiting until late Dec before he can get an MRI. I have > been very unimpressed with Children's Mercy (thoughh up until now they > have always been THE best- we have 2 older children and we would never > dream of taking them anywhere else). Part of me wants to keep trying to > get help and answers and the other part wants to take a deep breath and > see what happens over the next 4 months. Do I keep pressing to find a > second opinion, or wait like the Ortho told us???? > > >> >> Hello! First of all I am so happy that I found a group of parents who >> can relate to what my youngest son, Ayden, and our family is going >> through. Ayden just turned 1 last week. He is a strong boy, who loves to >> be silly, and has infantile scoliosis. He has a 21 degree dextroconvex >> curve between the T5 and L4. After a 2 month wait we finally saw an >> Ortho last week, only for the doctor to take 5 minutes asking us family >> history questions, and then tell us to wait 4-5 month to see if it gets >> worse. Ayden, although he is a year old, cannot sit unassisted, crawl, >> or even use his arms to reach for toys or hold his bottles (he was >> deamed to have low muscle tone- but we have no confirmation on whether >> this is scoliosis related). I am sooooo frustrated. I have a 1 year old, >> who we have been told by his developmental pediatrician, functions like >> a 3-4 month old. Immediately after the appnt with the Ortho I called >> both his PCP and Developmental specialist to ask if >> they could refer us to another Ortho for a second opinion. They both >> told us to just wait it out, like the Ortho had also told us to do. I >> refuse to sit here and let my son get further behing in life. Is there >> anyone else in the Kansas City area that can offer advise or a great >> Ortho for us to get a second opinion? Or has anyone else had a problem >> with all doctors telling them to wait it out? >> >> >> >> ------------------------------------ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 Good advice...Are you working closely with a doc that can help advocate for you in getting the MRI scheduled sooner? The pediatrician,perhaps? If not, provide them with Mehtas ET article and the other 3 subsequent articles on ET, published here in the states. Let the doc know that time is of the essence here and that if this is indeed a case of PIS that 4 months is too long to wait. As you probably already know, curves can progress rapidly in infants. Please keep us posted and good luck! HRH > Call and try to reschedule the MRI to bump the time frame up. Just play > dumb and call and say you cannot come that day bc something came up and if > possible you would like to reschedule at an earlier date. It's called the > appointment game:) Im a pro at it. If that's not possible see if there is > a waiting list for cancelations. > > Sent from my iPhone > > On Nov 11, 2011, at 11:15 AM, " " <alicia.marie@...> wrote: > > > I think because we are so new to this I feel like I dont even know where > to begin. We have seen a cardiologist, ortho, developmental specialist and > have Genetics clinic on Monday... so far every doctor has said " I need to > wait for MRI results " ... all these doctors are a part of the same medical > hospital-all appnts were set up by our PCP at the same time, so my > frustration is do we have to wait 4 month for an MRI, but all of the > doctors appointments were schelduled before an MRI was ever done... > > > > Hello! First of all I am so happy that I found a group of parents who can > relate to what my youngest son, Ayden, and our family is going through. > Ayden just turned 1 last week. He is a strong boy, who loves to be silly, > and has infantile scoliosis. He has a 21 degree dextroconvex curve between > the T5 and L4. After a 2 month wait we finally saw an Ortho last week, > only for the doctor to take 5 minutes asking us family history questions, > and then tell us to wait 4-5 month to see if it gets worse. Ayden, > although he is a year old, cannot sit unassisted, crawl, or even use his > arms to reach for toys or hold his bottles (he was deamed to have low > muscle tone- but we have no confirmation on whether this is scoliosis > related). I am sooooo frustrated. I have a 1 year old, who we have been > told by his developmental pediatrician, functions like a 3-4 month old. > Immediately after the appnt with the Ortho I called both his PCP and > Developmental specialist to ask if > they could refer us to another Ortho for a second opinion. They both told > us to just wait it out, like the Ortho had also told us to do. I refuse to > sit here and let my son get further behing in life. Is there anyone else > in the Kansas City area that can offer advise or a great Ortho for us to > get a second opinion? Or has anyone else had a problem with all doctors > telling them to wait it out? > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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