Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 In a message dated 12/28/00 5:22:13 PM Pacific Standard Time, Cruzmja@... writes: head tilt, ears not alligned, and one higher than the other, facial asymetry, head misshapen). Eager to hear someone else's story.. & (6/26/00, banded 12/22/00) - You mention the head tilt. Does have torticollis? Are you getting pt? I encourage you to go back and read previous posts if you love to read. You could spend hours upon hours reading everyone's story. I had to plead to get our DOC Band. When we out grew that in 7 1/2 weeks I waited 4 months and we got our STAR Band the end of November. We did craniosacral therapy in-between and still are actually. My sons was caused intrauterine and I had a c-section. Also had torticollis. Welcome! Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 : I'm sorry to hear that both your neurosurgeon and your ped are not so supportive. Our ped was reluctant at first, but he is supportive now. Our neurosurgeon is great and specializes in plagio and cranio. It sounds like you are doing exactly the right thing for your baby - the people at CT are experts in the area of plagio. They see so many cases of plagio everyday!! I am also a believer in prayer and I've done plenty of that during this very stressful process. I have to say it seems to be working. Although the process has been stressful, it has never felt for even a moment like too much to bear! I imagine that you can relate to that!! Keep us posted on your progress - hang in there!! Marci (mom to ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2000 Report Share Posted December 29, 2000 Sounds like my . It was caused by intrauterine also and he's got torticollis as well. We are doing PT 3 times a day at home. I need to call next week to get into a Ped PT and learn some other stretches. What is this star band that I have heard about a few times? Did your 7 1/2 weeks prove successful? When was born and his head was misshapen I asked and asked and asked if he was ok....everyone said, yeah it's just like that from birth. But now putting two and two together there was definately a problem....I wish md's would be more willing to listen to " mother's instinct " . and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2000 Report Share Posted December 29, 2000 Marci, Thanks for the encourgement. Just what I needed. I agree and understand completely. I have felt very blessed through this entire time. Happy new year. mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 hi everyone... i am thrilled to have found this group! i have FMS and though it's not really under control, it's bearable most of the time... i've just adjusted my life to fit as much as possible... my sister, , contacted a viral infection about 4 years ago... she was very ill and it took the drs 6 months to diagnose it... she started getting better, then different symptoms set in and 4 months later she was diagnosed with RA... it was very aggressive and they started her immediately on the medications usually prescribed for the beginning stages... (i'm sorry, i can't remember the names of all of them) nothing slowed it down or helped the pain... she was accepted into a year-long controlled research study for remicade... we didn't know if she was receiving the medication or not, but she started improving immediately... so we're sure she was getting it... she had to take methatrexate at the same time, so for 3 days out of every week she was very ill with the side effects of the mthx, but the pain and inflammation of the RA continued to improve... she did quite well for the rest of the year, then the study was over... within 10 weeks, she was once again nearly bedridden... the insurance company didn't want to approve the remicade, so the drs tried a couple other meds while waiting for approval... one of the meds tried was the arava... nothing helped... finally the insurance came through and we were all so relieved she could begin the remicade again... she didn't have the immediate improvement this time and after 2 treatments, the med caused a severe sinus infection... so they had to take her off everything but pain medications and antibiotics for 10 weeks... now they're trying the kineret without the prednizone (it causes severe heart palpitations, dizziness, nausea) and she just keeps going downhill... she can't wear her clothes anymore or go anywhere or sleep in her bed... she's so miserable... and because her body reacts so badly to the medications, the drs are running out of options and are really giving her no hope... we don't know what to do or where to turn... so on top of being grateful to all of you for letting me tell the story i would like to ask if anyone knows of products that may make it easier for her to live with this thing... she loves to read, but she can't hold the books... she can't sit at the computer and can't type... etc, etc... thank you for listening and for any ideas you may offer melody Quote Link to comment Share on other sites More sharing options...
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