Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 I often find myself thinking the same thing...I cant believe this is happening to me again! Sami is the 3rd one of my kids that have gotten something so rare. None of my kids have gotten anything genetic, they just get things that nobody has ever heard of! Sami was perfectly healthy until she was 5...I was thinking, finally a healthy one, and then she got Rhuematic Fever and we think that is what triggered the in Sami. As soon as I told my sister-in-law (who is a nurse) I told her they think she has this thing, but it is so rare I cant believe it, she said, " believe it...your kids get such weird things. " I then have to remind myself that they also have survived them with no long term side effects (which I've heard from doctors is more rare than them getting them in the first place), so if God has brought us this far, he will continue. Faith is what gets me through. Trish jmaloney0802 <jmal0802@...> wrote: I've never posted but have spent many hours reading on this site. I am dumbfounded yet comforted to know there are other families sharing our fever struggles. I'm looking for a connection between fevers and other things going on that I haven't read in any post- specifically Sweet's syndrome, (still testing), Chiari I malformation and Craniosynostosis. I have an 8 month old that was born with an adrenal cyst that was ruled as a hemmorhage at 2 weeks. Two weeks later, an incredible rash and fever began. We spent 5 weeks at 2 hospitals, got a leukemia cutis diagnosis that was withdrawn a week later (after a central line placement, of course!), had 4 spinal taps, bone marrow aspiration, 2 skin biopsies, many, many x-rays, CT scans, an MRI... I thought they'd covered everything. We left with a clinical diagnosis of Sweet's syndrome and was on Prednisolone for a couple of months. Rash disappeared and hasn't returned. Fevers " due to unknown origin " began in June and have earned us 3 hospital admissions due to elevated WBC. Chiari I and Cranio have come into play just in the past 2 weeks. I guess I'm in denial that our perfect world is being rocked and that our little princess could have so many odd things going on without them somehow being connected. I can't find it- Has anyone else come across any of these weird things??? I would appreciated any feedback!! - mom to Connor, Zack and Riley --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 > I've never posted but have spent many hours reading on this site. I > am dumbfounded yet comforted to know there are other families > sharing our fever struggles. I'm looking for a connection between > fevers and other things going on that I haven't read in any post- > specifically Sweet's syndrome, (still testing), Chiari I > malformation and Craniosynostosis. I have an 8 month old that was > born with an adrenal cyst that was ruled as a hemmorhage at 2 > weeks. Two weeks later, an incredible rash and fever began. We > spent 5 weeks at 2 hospitals, got a leukemia cutis diagnosis that > was withdrawn a week later (after a central line placement, of > course!), had 4 spinal taps, bone marrow aspiration, 2 skin > biopsies, many, many x-rays, CT scans, an MRI... I thought they'd > covered everything. We left with a clinical diagnosis of Sweet's > syndrome and was on Prednisolone for a couple of months. Rash > disappeared and hasn't returned. Fevers " due to unknown origin " > began in June and have earned us 3 hospital admissions due to > elevated WBC. Chiari I and Cranio have come into play just in the > past 2 weeks. I guess I'm in denial that our perfect world is being > rocked and that our little princess could have so many odd things > going on without them somehow being connected. I can't find it- Has > anyone else come across any of these weird things??? I would > appreciated any feedback!! > - mom to Connor, Zack and Riley > > > > > > > --------------------------------- > How low will we go? Check out Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hi , welcome to you and dawson. the worst case is basically that the ortho isn't good, you get a bad fitting helmet, and then dawson's head gets worse instead of better. it does happen, so you can't just blindly trust that the ortho knows what he is doing. that is why it is important to work with someone who is experienced. Cranial Technologies has the best overall reputation because they do only banding and their staff is well trained. other products such as starband and hanger band are used by orthos that do a variety of work and may have a lot or a little experience banding babies. in the hands of someone experienced all bands can be effective. location and insurance coverage are usually factors in the decision. My daughter had great result from a starband. she had brachy (flat in back). -christine mom to sydney/ 14 mo/ starband grad 10-06 > > My name is , and my son Dawson was diagnosed with torticollis at > three months old, and with Plagiocephely last Friday. > > I see everyone has had pretty good results with physical therapy, and > the helmet. Has anyone had any negative expieriences with any of > these? > > I would hope not, but i want to know what the worst case scenerio may > be. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi, I didn't mean to mislead anyone. I mentioned that my daughter had great results from a STARband. I know our ortho does tons of bands, but also does other orthotics. I guess you're right that there are other orthos that do only banding but I don't have experience with them. I don't recommend everyone go to CT. I think a local provider with good experience is best, especially if it is covered by your insurance (ours was 100%). I can't imagine flying my daughter to LA to go to CT, but I guess I would have done it if I had to. -christine mom to Sydney/ 14 mo / Starband grad 10-06 did I mention STARband grad ;-) > > , your information is misleading. There certainly are orthos > who deal with the helmets & plagio/tort issues exclusively that do not > use the Doc Band. They are just not franchises like CT. These tend to > be independent contractors. Ask your pediatrician. They should be able > to point you in the right direction. Or you can research on the web. > Google all the different helmet companies - starband, hanger & etc. > you'll find links with orthos who can help you. Just ask questions & > choose what's right for you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 , your information is misleading. There certainly are orthos who deal with the helmets & plagio/tort issues exclusively that do not use the Doc Band. They are just not franchises like CT. These tend to be independent contractors. Ask your pediatrician. They should be able to point you in the right direction. Or you can research on the web. Google all the different helmet companies – starband, hanger & etc. you’ll find links with orthos who can help you. Just ask questions & choose what’s right for you. Quote Link to comment Share on other sites More sharing options...
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